nightengalesknd

COVID 19 Routines

2020-08-13T01:53:47Z

About four months into the pandemic, I brought a coat hanger into my front entryway and hung it on the hook over the closet door where I hang my hat. On the bent end of the hanger I put masks. The plain masks I bought mail-order from Target when I first started going back to work-at-work and the flowerdy ones sent by my mother whose friend was making them for essential workers.

I worked in the ICU during the H1N1 pandemic of 2009. We ran low on beds and we ran low on masks and gowns. It was a surreal time. But it was nothing like this.

Never would I ever have anticipated some day I would have a mask-hanger in my front entryway where I keep the hat and coat for the season on hooks and my pocketbook hanging from the knob.

Schools closed in our area on Friday, March 13, so I am counting that as the start of the pandemic for practical purposes. Our large group practice has a blog. On Monday, I messaged the retired pediatrician who edits the blog. You’ve been putting up lots of posts about what we know medically about COVID. Schools just closed, for at least two weeks. What about helping kids adjust? What about mental health through all this? Can you use a piece on that? They could. I started typing.

They put up my advice under the inspired title “Changing Routines for COVID-19”

And how

They sent me home on March 20 to do telemedicine, although it took another week to figure out how that was going to work. The best place for me to put a telework computer is on the table in front of my living room couch. However, I have an open livingroom/kitchen design and didn’t particularly want my stovetop or cupboards in view. A few years ago, I had a job interview over webcam and fretted, “whatever should my couch wear?” Now it seemed my living room needed a whole new work wardrobe.

My theater tech instincts came out. First set design. Into the living room came two screen dividers I inherited from my grandmother that had previously been dividing other rooms, largely for decorative effect. Over the patterned divider went a solid colored sheet. A sound check. A lighting check. Into the living room came the gooseneck lamp. Four months into the pandemic, the lamp came loose from it’s base. Out came the string to tie the stem of the lamp to a chair.

Normally I practice in a room full of toys. They are for my patients to play with, but also to set the tone as a place where play is OK. Raggedy Ann and Andy now sit beside me on the couch. Props.

Four months I did telemedicine exclusively from home.

“This is new and different” I would say, usually right after “can you see and hear me?”

I don’t say that anymore. Nearly 5 months in, with most families having spent months teleworking, teleschool-ing and teletherapy-ing, I say “So this is our new normal.”

The telemedicine system we are using works better than nothing, which my mother would call “damning with faint praise.” If the family gets a text or phone call, the sound goes out. I try using the chat feature to ask them to log out and then log in again. If they don’t see the chat box, I call them on the phone with the same message. “I’m doing a lot of defacto IT support,” I tell families after we get the sound back. “The problem is that I don’t understand any of it so I just repeat what our IT people told me.”

Instead of printing the plan and handing it out at the end of each visit, I would message the nursing staff (who were working in the otherwise closed office) to print and mail it. Same with prescriptions for orthotics, referrals to speech therapy, diagnoses letters for medical assistance. We now do prior authorizations in phases. I do my part over the phone or with an online form. The nursing staff faxes supporting documentation to the insurance company from the office. Sometimes the insurance company tries to insist I use their form and don’t seem to understand there’s a pandemic on. One agent wrote “because of the pandemic” as the reason why we didn’t have the labs that are usually required. I spend hours each week on the phone with insurance companies. I don’t think that will ever change.

Three times a week, then twice a week, then weekly I would dial into a department meeting. These were supposed to become bi-weekly but three weeks went by without a meeting announcement. They are now monthly. I am reminded of the quote, “a meeting which should have been an e-mail” but I feel better with a routine of connection.

My giant hospital system sends a giant e-mail every Monday with relevant information combined with feel-good items guaranteed to raise my hackles and blood pressure. They send a second one to physicians on Tuesday which has a similar effect. The pandemic has apparently caused a secondary infection of toxic positivity.

Every day I get an e-mail with the results of all the COVID tests that have been ordered at the site where I work and at the practice overall. Every week I get an e-mail full of COVID testing infographics of which I can’t make heads or tails.

Our disability community does twice weekly Zoom check-ins, which cover everything from material needs to mental health.

A group of college friends started playing a favorite parlor game, NameGame, online twice a week. Normally, I wait all year to play NameGame in person, on New Years Day, after going to the ball in Philadelphia. I am starting to doubt there will be a Hogmanay Ball this year in Philadelphia. I collect names throughout the week, spell check them, and store them on a spreadsheet. I have played 229 female names since the start of the pandemic. It’s one way to keep track of time, I suppose.

I click on the county public health website daily around noon to check on cases and trends.

For the first time in years, I’ve been wearing short sleeves and ankle socks to work. For once, I am appropriately warm in the summer, not shivering under air conditioning for 10 hours at a time. For the first time ever, I’m wearing necklaces, because I’m not wearing a name badge on a lanyard. I suppose even a pandemic has a silver lining.

In June, I started going back to work-at-work once a week to see new patients and urgent medication checks. I had tried doing new visits by telemedicine and found I could sometimes catch a glimpse of a toddler patient. Others in my field are doing autism evaluations by remote. I’m not sure how.

At work, we are wearing masks and face shields. We changed the schedule to allow more time between patients, so we don’t need to use the waiting room or risk having families come into contact with each other in the narrow corridor.

Possibly the biggest blow for me was putting away toys. A previous routine was impulse shopping in the 2-dollar bin at Target. “The kids would love this!” I would say. Sometimes I would have to follow with the admonition to myself, “Nightengale, you don’t have to buy everything the kids would love. . .“

So I put away the 11 piece painted wooden train set, the magnetic alphabet, the dolls with cloth bodies, the books. I was especially sad to put away the books, but short of a 72 hour quarantine, there’s no way to clean them. Now I have a few plastic animals, dinosaurs and blocks remaining. My new routine is washing them with soap and hot water between visits, three or four times a day.

I have new scripts about ways to adapt virtual schooling for children with the most significant learning and communication needs. “No school assignment is worth your child’s mental health, your relationship with your child, or your job,” I say. I am not convinced that a national panic on missed academics is good for our children. If they all miss a few months, is anyone really “behind”?

“We are building the airplane while we are flying it” is a quote I find myself using often.

The headlines proclaim that children with disabilities are struggling with all the changes, and I have found this is often, but not universally true. Perhaps a quarter of my patients seem to be thriving. So I am sharing more information about homeschooling.

August is usually the start of my back-to-school routines, with forms for medication administration and last minute plans for classroom accommodations. Now I have scripts about my concern for children with ADHD having their needs met in the socially distanced classroom. One script is not new, even as I coach families through new school situations. “No one has ever put me in charge of a school district, and probably nobody ever will.”

My patient notes have new phrases that have become automatic on the fingers. “His visit was via video due to the pandemic.” “She is able to wear a mask for a brief shopping trip but not a full school day.” “His district will be virtual the first nine weeks and then likely move to a hybrid model”

I see most of my patients at about 4-6 month intervals, so I’m now checking in with families I last saw in February and early March, PrePandemic. “You know, if someone had told me at our last visit that within a few weeks schools would all be closed and we would spend months indoors, I would have asked what dystopian science fiction novel they’d been reading.”

Maybe if I found out and read it, I’d have some better scripts.

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The ADA turns 30

2020-07-26T00:50:00Z

The American’s with Disabilities Act turns 30 this week. Pittsburgh had been planning a celebration which I would have attended. Instead, our local community is keeping in touch through Zoom and Discord. I think about how much the internet has done for the disability community. Our ability to connect has long been a strength.

In 1973, Section 504 of the Rehabilitation Act prohibited discrimination based on disability by any program receiving federal funding. It sounded great in theory but the agency of Health, Education and Welfare had to sign regulations outlining specifics. The secretary did not. In 1977, a group of activists held the federal building in San Francisco for 26 days. The FBI shut off the phones. A Deaf person signed the news of the day out the window to others who then contacted the news. Another form of connection.

The protest was successful. I was born in 1976 so this sit-in happened in my lifetime. I didn’t learn about it for over a decade.

The ADA was signed in 1990 giving similar protections to people with disabilities for employment and public accommodations. I was 14. I probably read some newspaper articles about it at the time. I wasn’t much for news, but I was pretty interested in disability even though I didn’t have any diagnoses and no one thought of me as a disabled person.

In 1994, I started thinking of myself as a disabled person due to my inability to handwrite more than a few sentences. A laptop was life changing, except when the thing was broken again. I joined a disability group at college. They accepted me even though I didn’t have a diagnosis. We found a pile of pamphlets somewhere about disability rights.

My senior year, I had the opportunity to take a class in disability law at our sibling school, taught by a practicing disability law attorney. Students at the sibling school were required to take a class in “social justice.” The disability law class was full of students meeting their social justice requirement and then every student with a visible, and possibly invisible disability in both campuses.

That year, 1998, was the year the first ADA case reached the supreme court, which was Casey Martin’s request to use a golf cart when competing in the PGA. We discussed this case in class at length. We had a large hardcover textbook, which I don’t think I’ve opened since 1998, and a paperback copy of the ADA.

The internet really blossomed over the next few years. I discovered instant message, message boards, then blogs. I found disability community. In 2003 I entered medical school and encountered discrimination. For about a year, I walked around with my copy of the ADA conspicuously sticking out of my tote bag. Sometimes I would read it while waiting for another meeting where someone was going to tell me that my need to type could not be accommodated.

In 2008, the ADA Amendments Act was passed, broadening the definition of disability after court cases had interpreted disability very narrowly.

In 2017, the US House passed the ADA Education and Reform Act, requiring people who encounter access barriers to notify the business in writing. The business would then have 60 days to respond and 120 days to show some progress towards providing accessibility. Tammy Duckworth managed to block the law from passing in the senate. Apparently, 20 years notice wasn’t enough.

In 2019, I started work at a major health system in a reasonably sized city. I can’t really use a web page I need to access reference material, because the picture on the screen changes every few seconds. I can get through, but it takes several minutes and a lot of effort, multiple times a day. I brought this up in October and had a series of e-mail exchanges with someone who said they would look into it. In January I received an automatic e-mail closing the ticket. The problem still persists. More recently, we were told we would need to use a smartphone ap for authentication to log onto remote servers. I sent in questions about how this would work for someone who can’t use a smartphone. Two weeks passed without a response. Finally I was told to call someone, who said my ticket had been sent to the wrong team but he would send it to the right one. Two more weeks passed. I spoke with a supervisor in IT and asked if IT had someone in charge of accessibility. Someone to look at proposals and say things like

How will this work for blind users?
Where are the captions?
What if someone can’t use a smartphone?

Apparently the IT department of a major health system in a reasonably sized city does not. I supposed I shouldn’t be surprised. Neither does Twitter. The internet has long been a place for people with disabilities to connect, but it can also be a site of ongoing inaccessibility.

The ADA turns 30. We have our rights. I’m thankful we also have each other for support as we continue to fight for them.

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What does your doctor do all day?

2020-06-29T01:14:16Z

Except for people who themselves work in health care, I don’t think most people know much about what doctors do when not in the room with their patients. And a lot of people’s perception of doctors comes from TV. Most TV doctors work in hospitals. When a show features a TV doctor in an office practice, he (at least I can’t name any female TV doctors who practice outpatient medicine) sees a patient and then sees a patient and then sees a patient. Often, they show banter between the doctor and office staff, before seeing more patients. Occasionally they show the doctor meddling hideously in the life of his patient by showing up at their house unannounced and uninvited.

I got to the office Friday morning a bit after 8 AM and left just before 6.

After doing the COVID things after arriving (taking off my cloth mask, washing my hands, putting on my medical mask) I met briefly with M, the nurse who works primarily with my practice and does the majority of scheduling. I’m never sure how to refer to her. I hate the implication of “my nurse.” But there are other nurses in our office, so I can’t say “our nurse” or “the office nurse.” Anyway, she’s the glue that holds the practice together, especially now that I am working from home most days. She handles all phone calls, paperwork in and out and gets vitals.

She has a checklist of questions to ask the family of new patients, to make sure they are appropriate for the practice. There’s a new patient on my schedule I don’t know anything about, so she shares the intake checklist with me. We discussed how many new referrals she was getting and some options to revise the schedule if I add another day in the office that is currently tele-health. I put away the toys that I washed last week and left to dry and reviewed the note I’d written for my follow-up patient’s last visit.

I saw 3 patients. I have a specialty practice with long visits. I’m currently see up to see 4 patients on an office day, and 6-8 patients on a tele-medicine day. Two were new patients, with 90 minute visits. The third was a follow-up, with a 45 minute visit. We’re leaving extra time between patients so they don’t run into each other in the hallway. At each visit, I got historical information, examined the child, played and interacted with the child, made recommendations verbally, wrote down my recommendations, printed them out and handed them to the family. I accounted for my time spent in two places, an online billing step that is part of the electronic medical record, and then separately on paper.

This, by the way, the time spent in the room with a patient, is the only thing I did all day which can be billed to insurance.

So that was 3 and a quarter hours providing direct care for patients. I was in the office nearly 10 hours.

What else did I do?

I washed all the toys still left in my exam room twice with soap and hot water. I have removed most of the toys due to COVID but left a few plastic ones. The first time, I dried them with baby blankets because we are out of towels. The second time, I left them to dry until I am back in the office. I got antimicrobial wipes from another exam room and used them on my stethoscope, reflex hammer, ophthalmoscope and a board book I use to assess language skills of young children.

I refilled prescriptions for 7 patients. At my current office, I can do this electronically now, which saves some time. For each prescription I check the dose from the last visit or phone message with the family and also how long it has been since the last visit. If it’s been too long, I message M to ask the family to schedule a follow-up.

I spoke with six families on the phone. I made recommendations to adjust medication for three of them. I also went over recent lab results for one of these. I advised one family to contact their pediatrician to address the problem they were describing because it sounded like a medical problem that was triggering the behavior change. (Up to 30% of “behavior change” in people with developmental disabilities can be attributed to medical problems, in one study. I’m not 30% good, but I do identify a potentially treatable medical explanation pretty often.) The fifth family was requesting a prescription for in-home behavioral services, which I will write over the weekend. The sixth was giving me an update on a recent hospital admission. The shortest phone call was probably 10 minutes.

I completed FMLA paperwork for one child and signed a PT prescription for another. I completed these after the office staff left for the day, so I put a post-it on the pile saying “please fax.”

I also got some labs off my desk I had already discussed with the child’s family, and a happy-gram from an insurance company telling me my patient was on 3 different mental health medications and I should contact them if I want help managing his condition and medications because polypharmacy is a problem. I mean, yes, polypharmacy is a problem. I sincerely doubt that anyone at the help-line at the insurance company would have an effective fewer-medication strategy. Those papers went into another pile with a post-it saying “please scan.”

M grabbed me to talk about a new referral from another office in our practice. The description sounded as though the patient might need more urgent and different care than I provide. I spoke with the nurse who had made the referral about my concerns.

I received a subpoena faxed from family court asking me to testify about a patient. I contacted my manager who said “can you scan them in and e-mail them to me?” I don’t know, could I? I didn’t know how to scan documents into e-mail in our office but our scheduler scanned them for me. I e-mailed them to our manager who forwarded them to legal.

I printed out the recommendations I had for a new patient I had seen by telemedicine earlier in the week so it could be mailed to his family.

Mid-morning, I received notice that a medication I had prescribed needed a prior authorization. I had already submitted the prior authorization for it on Monday. The patient has two insurance companies. The primary insurance had covered the medication except for the co-pay. Yesterday, the secondary insurance contacted me requesting proof that the primary insurance had paid for the medication. I probably spent twenty minutes on the phone with them yesterday. They told me the pharmacy could call them with this proof. Yesterday, the pharmacy told me they would do this. Today I received a new request for a prior authorization.

So shortly after noon, I called the insurance company. I input my medical ID number, patient’s insurance number and date of birth into the electronic system. When a person answered, he asked for all these numbers verbally, along with my name and the patient’s name. I told him the story. First he said the medication had been covered on Monday. I asked why I got a fax stating it wasn’t. I read him the fax. He said they then learned they weren’t the primary insurance and needed proof the primary insurance had or hadn’t paid. I stated the pharmacy was supposed to have called yesterday with that information. He said he saw a claim but not proof of payment. I asked to speak with someone who could resolve this without my spending 30 minutes on the phone with the primary insurance trying to get written proof sent to me to send to them. Could I at least have the primary send them that information directly? He put me on hold. He came back. He found an override had been put into the system showing the medication had been paid for yesterday and had been authorized for three months. He couldn’t provide me with a reasonable answer why he hadn’t seen this information earlier in the call. He couldn’t guarantee I wasn’t going to have to go through this same whole process in three months. He couldn’t explain why it was approved for three months rather than a year as it typical. He could not reach a supervisor but took my name and e-mail address. Then I called the pharmacy to make sure they had been notified. The entire process today took 50 minutes. In other words, I had a prior authorization for lunch.
(The entire process, over the course of this week included
1 phone call to the primary insurance
3 to the secondary insurance
3 to the pharmacy
30 minutes filling out the form (requesting names, dosages and dates of all prior medications tried and why they didn’t work, vital signs and lab values)
And in addition to my time, time spent by M faxing the office notes including vital signs and lab tests to the insurance and scanning all these faxes into the system

The TV show, “New Amsterdam,” which has serious serious serious “hospitals don’t work like that” problems (https://nightengalesknd.dreamwidth.org/#entry-106107) , had an episode where the executive director of the hospital called an insurance company. They showed him getting stymied by the phone tree and the denials based on protocols delivered by non-clinicians. I cheered at the representation of my days. Then they showed him going physically to the office of the insurance company and demanding to be heard, and eventually winning. Sigh. Hospitals (and insurance companies) don’t work like that.

I sent two e-mails and received one about a message from IT about something I might need to install, that might not be accessible for me. Without this thing, I won’t be able to access the website I use to check potential drug interactions and prescription recommendation, nor the website where I can read full-text of articles in the literature, nor open links e-mailed to me by the hospital system where I work. It currently takes me about 5 minutes to get to any of these sites, partly due to accessibility issues.

Around 5 PM, I realized my ID badge was no longer attached to my lanyard. I can leave without the badge but will need it to get back into that building next time. I looked in my office, the exam room, the front desk area. Again in my office, the exam room, the front desk area. The toy containers in case it had fallen off and swept into one of those. My tote bag. Pockets. Finally found it stuck in the handle of a drawer in the room where I had gotten the anti-microbial wipes.

If I had had more patients in the office today, these other things would still need to have been done. Most of them couldn’t be put off until Monday. I would have simply stayed later on the phone and refilling medications.

I am home now, and had something to eat and am reading the news of the day. I need to send an e-mail to a colleague about the new referral with the potentially urgent problem. And I have about two hours of charting to do on patients seen earlier in the week, because we have 4 days to complete office notes and I’ve been busy earlier in the week seeing patients, calling patients, calling insurance companies and attending a virtual professional conference in my field. It takes me about two hours to write a report on a new patient, which is slightly above average for doctors in my field. It takes about 20 minutes to type up a note on a follow-up patient, which is just about average for doctors in my field. This week I saw 15 follow-ups and 3 new patients. That’s a guaranteed 11 hours typing in store. If I’m too tired to do that typing at night, which I often am, that’s Saturday and Sunday’s plan.

Several years before I started medical school, I had a shadowing opportunity with an OB-GYN. I have two memories of that day. I learned about the use of extra birth control pills as emergency contraception (this was years before Plan B was commercially available over the counter) That was the clinical thing I learned. But the main take-away for me was not a clinical pearl. It was watching the doctor spend the day on the phone with an insurance company. Most of the time she wasn’t in the room with a patient, she was arguing with this insurance company. She wanted a medication covered that was expensive. I can’t remember her name or the name of the medication but I can hear her on the phone. “Yes, I’m aware it’s expensive. The alternative would be to put her in the hospital and give her blood transfusions, which is riskier and even more expensive.”

I don’t know if that’s what your doctor does all day. It’s what she did. It’s what I do. I wish I could do more taking care of patients and less arguing with insurance companies, but right now, arguing with insurance companies is part of taking care of patients. So’s all the rest of this stuff. It would be nice if at least the phone call time could be reimbursed. It will be nice when we have a portal where I can message families instead of some of these phone calls.

I have about 350 active patients. I saw 3 of them today. I interacted with or did something on behalf of 20 of them. That works out to about 5%. It will take 600 patients to reach our goal of having my schedule completely full. That will mean more time in the day seeing patients, and more patients who need things done in the minutes before, between and after patients. I tell my patients they can call any time with problems or concerns, and that I would be happy to sign their FMLA forms and their therapy referrals. And I mean it.

I’m just not quite sure when.

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In which I am told that ABA doesn't do compliance training and I prove this statement wrong

2020-06-26T01:55:04Z

I could be writing all sorts of things. About coronavirus. About helping families through coronavirus via telemedicine. About going 2.5 months without any conversation in person with anyone I knew except for a brief chance encounter with a friend in the store. About how strange it is to be going to work again with other people. I could be writing about how I have now lived in my current location longer than anywhere else I have lived as an adult. Or all the cooking I’ve been doing. Or virtually anything else I’ve meant to write about over the past 3 months.

Instead I’m angry and I can’t send this as an angry e-mail to the person with whom I’m angry, for political reasons, so I’m saying it here.

Here’s your warning that I’m going to talk about ABA and compliance training.

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For background, I’ve been attending a virtual conference about caring for people with intellectual and developmental disabilities. The presenters have largely been medical professionals who care for children and adult with intellectual and developmental disabilities. It hasn’t been terrible and some of it has been downright useful. There has been some inclusion of self-advocates and parents and professionals who listen to self-advocates.

Today’s session was on helping people become self-advocates, with a session on children, adults and older adults. There was the good point made that behavior is communication, and so even young children can advocate if we pay attention. Saying “no” is advocacy, even if the child ultimately does have to do the thing they don’t want to do. There was some decent discussion about when it is and isn’t OK to use restraints if that is the only safe way to provide urgent medical or dental care. I thought I had a chance, so I asked in the chat,

“How do we reconcile the common professional recommendation for compliance based ABA with our support for self-advocacy? Many autistic people advocates speak about how ABA shuts down attempts to self-advocate and does not allow children to refuse any activity through their words or behavior.”

I was hoping it would be addressed by several of the panelists, particularly the one in my field. Instead, it was sent to the psychologist on the panel who provided a sanitized definition of ABA as the science of behavior and stated they rarely use aversives and maybe they did compliance training 30 years ago but not anymore, at least not reputable providers who are doing real ABA the right way. She also made some references to working with people with the most severe behaviors. (As though the rest of us don’t?)

So she didn’t grapple with the question, she sidestepped it by saying it doesn’t happen anymore. And in no way addressed the irony that autistic people are advocating against this therapy, in a session on how to support self-advocacy. After all, even if she doesn’t think it’s compliance training, the advocates do.

I quickly put a comment into chat that I definitely see compliance training in this day and age. Needing a quick example that could be understood by a wide interprofessional audience, I brought up a child who doesn’t follow a direction, so the therapist uses “hand over hand” to get the child to follow the direction.

This was treated to a nice, sanitized explanation of how “hand over hand” is part of a hierarchy of prompts used to teach someone something, if verbal prompting or gestures aren’t successful.

So physically moving someone’s body to teach them something, without their consent, isn’t the same as doing it to get compliance. Right. Well, maybe it’s just us pesky autistic people using the phrase “compliance training” to malign ABA. But a real ABA provider wouldn’t do anything called compliance training. And if they did, it would only be to address unsafe behaviors, because children have to be able to comply for their safety.

It took more than twenty seconds of google, but about twenty minutes of google found me:

A PDF from an ABA center describing the techniques they use. They define "noncompliance - fail to respond to a directive within 5 seconds” and require the therapist to move from verbal to gestural to physical prompting every 5 seconds. This includes directions to "match" or "roll the dice"
https://www.thescottcenter.org/sites/default/files/PoliciesAndProcedures_1.pdf

I couldn’t find a date on the document, but the center was founded in 2009. So either they uploaded an older document, or it’s a lot newer than 30 years old.

This is a 2003 study on a program to use a timer to teach children to sit and wait. It combines “aggressive” and “non-complaint” behaviors as though they are equally problematic. Non-compliance was defined as any response by the child in opposition to the therapist's/ counselor's direction or responding with a “no.”
https://psycnet.apa.org/fulltext/2014-44575-004.html

Too old? How about 2016. This is a study to get a 2 year old to sit down in a chair when told and stay there for increasing lengths of time. If the child got up from sitting before being told "all done" or protested vocally, then he was required to follow another direction (such as putting a piece in a puzzle) before being permitted to take a break. Did I mention the child was two?
https://www.jcpaba.com/uploads/3/9/2/1/39211607/heather_corey_jcpba_2017.pdf

Anything newer? How about 2019. “Improving compliance in primary school students with autism spectrum disorder” It’s in a peer reviewed journal, the “Journal of Behavioral Education” so it’s kind of hard to brush off as someone doing ABA “incorrectly.”
https://link.springer.com/content/pdf/10.1007/s10864-019-09346-5.pdf

Here’s an ABA provider website, with advice on dealing with “non-compliance”

Advice for non-compliance on ABA provider website
https://www.sbsaba.com/reactive-strategies-for-noncompliance-in-aba-therapy/

And here’s a training for school psychologists entitled “Errorless Compliance Training and the Play Your Way to Compliance program”
https://ed-psych.utah.edu/school-psych/_documents/grants/autism-training-grant/power-pt/ECT-PYWTC.pdf

Includes a checklist asking parents the child's likelihood to comply if asked to "push the car" or "jump up and down"
Tell children "If you follow directions quickly you will make someone happy and learn new things faster.” You then play a “Simon Says” type game with activities like “touch your belly” and “quack like a duck.” The child gets verbal praise and an edible reinforcer for each request. They advise parents to repeat the compliance session until the child follows 80% of the directions

I can’t find a date on it, but they include an article from 2012 in their reference section, so within the last 10 years.

I’m not going to link them here but I also found a number of ABA training videos. 2011: Teaching your autistic child to be compliant is actually to be accomplished fairly quickly by mastering 1 5 minute compliance drill. 2012: Using a no, no prompt when teaching compliance to kids with autism. Because “when we have compliance we can teach anything and extinguish all challenging behaviors.”

And here’s one from 2019. “Three Step Guided Compliance.” The child is asked to clean up. He says he doesn’t want to. His mother takes his hands and uses them to put his book away. (They call this a physical prompt.)

You want evidence based? Here is evidence that the phrase and concept “compliance training” is alive and well and living in psychology journals and ABA treatment centers within the past decade.

So instead of telling me and 100 listeners that ABA doesn't do compliance training, how about you read some of your own literature and then grapple with the question of how to reconcile support for self-advocacy with a recommendation for ABA?

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People Did That

2020-01-25T01:12:24Z

This is a bit political. Not in the endorsing specific candidates sense, but in the sense that disagreements about what should be considered a right and provided by the government are political.

I’ve had A Week. A Month. A Career.

And I’m a rules-following, might even say rules-loving autistic.

But I’m sort of at the end of my patience with some (many? most?) of the rules I’ve encountered lately.

Because The Rules are not some immutable provision of the universe.

Rules and laws are made by people. People did that.

The formulary for our state medical assistance changed at the start of the year. A medication I prescribe a lot was taken off the “preferred” list. And money doesn’t completely explain it, because some more expensive medications ARE on the preferred list. Patients now have to fail five medications off the list before they might be granted access to a new prescription for the one that was removed. And many of the medications on the list are different formulations of one medication. I’m glad they are covering these different formulations, now, because that’s new. But. . .they shouldn’t count as different medications for this purpose. People already on the medication are generally getting approved. After going through the prior authorization process.

I now have a script, verbal and written (for the medical record) explaining this process to families. A literal script every time I write a script. I like scripts, but this one has gotten old after the 20th time.

Another medication is covered in capsule and liquid form but not the tablet that can be cut in half for a smaller dose. Another now needs an authorization for patients under 18, even though it has FDA indications starting at age 6. I fill out the forms, giving all my reasons, and then I get a denial that suggests no one actually read the reasons, and then I call the insurance company and talk to a physician or pharmacist and then I often win.

The people I call on the phone for an authorization aren’t the ones who made the rule, and I know that. I can’t take the problem out on them. I am trying to figure out exactly where I can take a complaint to the people who changed the formulary. Because it doesn’t make a lot of medical sense.

And people made the formulary.

Possibly people with experience prescribing medications, but probably not people with the experience of loosing access to a medication that was working, or spending hours on the phone getting approvals.

When I call, I have to enter my ID number, the patient ID number and the patient birth date before I am granted access to the phone tree. When I get to a person, they then need me to tell them both ID numbers and the patient birth date. They won’t have any access to what I entered into the system. So why am I required to enter it into the system?

People made that phone tree

There is a program that will provide transportation to medical appointments, for a child and a parent/caregiver. They won’t transport anyone else, even an infant sibling of the patient.

People made that rule.

And probably, people with cars and people who can afford baby sitters. People who have never had difficulty getting to a medical appointment.

People decided the income limits to qualify for medical assistance, and SSI and SSDI and SNAP and Section 8 housing. People who probably never needed food, housing, medication or other necessities provided by any of these programs.

The hotel has a shuttle that is not wheelchair accessible. Someone made that decision. They at least were up front about it on the hotel website. The sidewalk to the hotel from the nearest bus stop has curb cuts all the way – until it doesn’t. You have to cross two extra streets to get to the bus stop. Someone decided not to put in a curb cut.

Someone at the doctor’s office decided that you have to sign for your copay on a touch screen. Someone at the CVS pharmacy franchise decided that too. Someone at the Apple Store. And this restaurant. And that one, and the other one. They also decided to make all the tables high-tops. And to play music at decibels incompatible with most verbal speech.

People made these rules, and then left enforcement in the hands of people who didn’t. Often, leaving enforcement in the hands of people who don’t have the ability, within their rules, to authorize any changes.

People did that to other people, made laws, made rules to make life harder for them. They usually give money as the reason. Sometimes there’s another stated reason, one that usually affects people with less privilege disproportionately.

I understand the need for rules, for expectations, for order.

But my dominant sense of 2020 so far is one of rules made and imposed and then hidden behind in ways that create ongoing harm. And I have to assume, at some point, that the rule-makers simply don’t care about the harm. Probably because it isn’t them, or anyone they care about, who is being harmed.

People are being harmed.

By people. People did that.

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Script the script, I pray you, trippingly on the tongue

2019-11-01T02:58:52Z

November first is Autistic Speaking Day.

https://autisticsspeakingday.blogspot.com/

I’ve participated a few times before
Amplifying Autistics
https://nightengalesknd.dreamwidth.org/108050.html
Writing the brochure I want to read in the world https://nightengalesknd.dreamwidth.org/104300.html
Autistic ear, autistic voice
https://nightengalesknd.dreamwidth.org/100586.html
Speaking from the shadows
https://nightengalesknd.dreamwidth.org/88699.html
Autistic speaking day, 2012
https://nightengalesknd.dreamwidth.org/84015.html

And here goes

I speak. I speak a lot. Frankly, I’ve described myself as aggressively verbal, and I’m not paying myself a complement when I say it. I don’t always know when to stop speaking. I don’t always hear the pauses in conversation. As a child, other children told me I sound like I swallowed the dictionary. I always found that ridiculous because I’d never read the dictionary. I did read the encyclopedia, although after the age that insult mostly wore off. I love words and looking for the right word and making up a new word if there isn’t one.

Most autistic people speak. I’ve seen an estimate that 20% of autistic people don’t speak verbal words, but I haven’t found the study(ies) to substantiate this. I did a chart audit a few years ago of 96 consecutive autistic patients age 3 or older and found about 80% used some verbal language and 65% used verbal sentences. Obviously, verbal people are more likely to be diagnosed at a later age, if at all.

Autistic people who speak often speak differently from neurotypical people in ways that get noticed.

Today I’m going to talk about scripting.

Lots of autistic people use scripts, at least some of the time.

Script (noun): the written text of a play, movie, or broadcast. (google)
Script (verb): to use memorized phrases or larger strings of language for a variety of communication and self-regulation purposes in a way that is not typically used or expected by neurotypical people (Nightengale)

Repeating lines from a TV commercial would be scripting. Coming home from school and repeating sentences spoken by the teacher would be scripting. So would learning to say “I’m OK, I’m OK” as a strategy to calm anxiety.

So would writing out a plan ahead of time before calling a store or doctor’s office to ask questions

So would be coming up with the language from scratch to answer a question or tell a story, and then using that same language many more times whenever the question is asked or the story is relevant.

I don’t use a lot of scripting that is generally flagged as a script. At least, I don’t think I do. But I’m realizing more and more just how many scripts I use.

Context is everything

“Speak the speech, I pray you, trippingly on the tongue”

What does it mean? How will someone respond?

Well, if I’m onstage playing Hamlet, this is expected language. But assume I’m not.

(“expected” is a snarking script against the social skills expert who labels behavior as “expected” and “unexpected” because that’s ever so much more helpful and less judgmental than “appropriate/inappropriate” or “good/bad”

If someone recognizes it as Shakespeare, they may chime in, or finish the quote or label me as pretentious

If someone doesn’t recognize it as Shakespeare, they will likely label me as “weird” at best.

So I don’t use a lot of scripts from Shakespeare. Or scripts from other plays, movies or broadcasts. At least, I don’t generally use these scripts out loud.

I was standing at the bottom of the set in dance class, across from the teacher. It was a tough dance, so we were walking people through more than usual before dancing it. He was going to ask me if I wanted to walk it. I knew he was going to ask. And I realized I was going to answer “In Spain”

The answer to “do you want to walk it?” is “I think I’ve got it.”
“I think I’ve got it” comes directly from the My Fair Lady Song, “The Rain in Spain Stays Mainly in the Plain”

“I think she’s got it! By George, she’s got it! Now once again, where does it rain?”
“On the plain! On the plain! And where’s that blasted plain? In Spain! In Spain!”

I can’t think “I think I’ve got it” without thinking the rest of that in my head. SO MANY WORDS and phrases set off songs in my head, or play quotes, or the book where I first learned the word, or the class at school. . . . I can turn it off. But I have to actively and consciously turn it off. I don’t ever really have to turn it on. I keep most of the scripts from scripts in my head.

Most of my scripts, though, the ones I say out loud, are the ones I write myself.

To some extent, I think most people write some scripts themselves. Every person has an idiolect, a unique set of words and syntax. I LOVE that word. People who travel probably approach the hotel desk with the same phrase every time. People often tell a story in a pretty similar way each time. People call stores to ask about stock or hours using pretty much the same language each time.

I hate the telephone so much I’ve neologized the word “telephonophobia.” (I’ve also neologized the verb “neologize” from the noun, “neologism” which means a newly created word, often in a pathologized way.)

But I have to make a lot of phone calls for my work. Generally, I’m returning the call of a parent. And I say “This is Nightengale Samarkand from Developmental Pediatrics” pretty much every time. The doctor next to me says “This is Dr Lastname.” It’s an idiolect. It’s a script.

When I’m winding up a new visit, I ask “is there anything else we haven’t talked today about that you think is important?” At follow-up visits, I generally ask what is “new or different since I saw you last?”

I get asked the same questions over and over, to the point where I have a lot of scripted answers. I have a script about the side effects of common medications. I have a script about how the family should call me if “you or [other caregiver] feel like ‘that’s not my kid’” I have a script about the risk of addiction in people using stimulant medication and a script about the DEA regulations for stimulant medication. I change the scripts over time, in response to the questions I’m asked and how people respond to what I say. It’s a cross between a script and improv.

I have a bunch of new scripts about medical marijuana and CBD oil. They vary depending on how much information the person asking wants. Some are short and some start quoting results from research literature. There’s a story I often tell about a medication I wouldn’t prescribe a few years ago for kids due to the lack of pediatric data but often prescribe now that there have been some studies.

Of course, there isn’t a script to answer every question. I often get asked new questions or variations of familiar questions and have to spontaneously create new answers. Although for a great piece of irony, I do have a single script to start the answer to a lot of questions.

“Wow, what a great question and I have absolutely no idea.” Generally this is followed by either an attempt to look up an answer on the spot or reason out an answer through what I know on the topic.

Sometimes I am specifically asked to deliver a script on a topic. I mean, they call it “presenting” or “giving a talk” or “teaching.” Highly verbal autistic children have long been described as having “little professor syndrome.” I guess because they sound sort of like big professors, who are expected to be giving talks on topics. There’s that “expected” word again.

Here’s a new definition of irony: highly verbal, perhaps aggressively verbal autistic spending my day speaking (and scripting) to and about autistic people who aren’t very verbal

And here’s another bit of Shakespeare, Hamlet again even. Just because I like it.

“Words, words words”

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Violin lessons

2019-10-02T01:10:07Z

Thee violin lessons. Or maybe two lessons and a story.

I

I took violin lessons off and on for about 10 years, starting at age 6. I watched Itzhak Perlman on Sesame Street, and later live. I wanted to play Beethoven’s Violin Concerto. One of the favorite baiting questions to ask me as a kid was the name of my favorite song. I would say, “Beethoven’s Violin Concerto.” They would answer, “No, a song with words” and I would say, “Fine, then Beethoven’s 9th Symphony.” But, really, I never got as excited about the 9th Symphony as I was by the violin concerto, particularly the 3rd movement, the rondo.

My early lessons were in the Suzuki style, which was probably for the better as they emphasized playing by ear over reading music. I had a pretty good ear for music. I could pick up the violin pretty early on and make it play what I considered a reasonable enough approximation of most melodies I could hear.

I liked a lot of the Suzuki music, starting with folk tunes and moving to real classical pieces.

However, the Suzuki method also emphasized technique, and that I didn’t have.

I picked up the bow and my fingers and thumb bent inwards at the knuckles as I maintained grip. I could position my fingers correctly, but then tended to drop the bow.

Meanwhile, my left hand was having troubles of it’s own. My fingers on that hand also bent backwards when I exerted any pressure on them, such as the pressure needed to push a string down to the neck to create a note. And my wrist was supposed to hang elegantly downwards, but instead, it also bent backwards, upwards, so that I stabilized my grip with the heel of my hand.

I wasn’t diagnosed with anything at the time. My handwriting was considered messy, but not a problem, because first graders weren’t expected to be writing much. My hand grip on the violin was considered a bad habit.

I was reminded. My fingers and hands were carefully positioned by the teacher. Over and over, I got my hands into the “correct” grip, only for them to collapse within a note or two. My teacher tried a roll of paper taped underneath the neck of the violin. When my hand encountered the roll of paper, that should serve as a hint to drop the wrist. Instead, I crushed the roll of paper.

So the teacher got a thumbtack.

Yes, a thumbtack.

The thumbtack was taped, pin down, on the neck of the violin. When my hand encountered the point of the thumbtack, that should serve as a stronger hint to drop the wrist.

Shockingly, I did not actually puncture my hand with the thumbtack.

Also shockingly, the thumbtack did not create a correct handgrip on the violin neck. Eventually, she gave up, the thumbtack came off, and I continued to stabilize my grip with the heel of my hand.

I’m almost – almost amused now. They viewed my neurological weakness as a habit, and tried to fix it through verbal reminders, escalating physical prompts, and eventually negative reinforcement. Basically, a form of ABA. No one ever tried ABA on me as a child for autism, since they didn’t know I was autistic. But they did try it on me for cerebral palsy, which they also didn’t know I had. It was about as effective, and made just about as much sense.

II

I joined the elementary school music ensemble. I guess we called it “band.” There were generally a couple of violins, two saxophones, a few flutes, so many kids on piano and keyboard that many of them played the parts for other instruments, and a disproportionately high number of drums.

The violins sat directly in front of the saxophones, and were pretty much drowned out.

In my case, that may have been just as well, because I couldn’t play most of the music. All my violin music to date had been in the key of D, so I hadn’t yet learned some important notes, such as C natural. Or any flats. The band music was keyed for wind instruments, which meant keys with two or three flats. And it was mostly band music, which means I didn’t recognize any of it except for the Christmas carols.

Also, I didn’t really know how to read music.

I played by ear what I could. I spent one holiday concert playing Good King Wenceslas with my bow a good half inch above the string.

But middle school was coming. And in addition to a 6th grade band, a regular band and a jazz band, the middle school had an orchestra.

I dreamed of the orchestra. I made up songs about being “queen of the orchestra.”

“No more saxophones to take my place
Just cellos, violas and double base-s
Flutes, and piccolo, piano and oboe
Those are the instruments that light my face”

I started middle school. I asked about orchestra. I was told when it met, but that turned out to be 6th grade band. My mother called the school to ask about orchestra and was told when it met, but that turned out to be jazz band.

The second week of school, a man and woman came into our classroom.

“We heard there was a violin player in this class,” they said.

Apparently, none of the 6th graders had gotten information about the orchestra. But the music department had gotten information from the elementary schools about orchestral instrument players who were starting 6th grade. So when no 6th graders had shown up to the first orchestra session, they went door to door to find us.

I spent a year in that orchestra. I wasn’t very good. But it was orchestra music, not band music, and more of it was in keys I could play. And the string section wasn’t drowned out by the saxophones.

III

I moved to a school where I wasn’t good enough for the good music ensemble, and I gave up after two years in the other music group. But I kept up lessons for awhile before giving up completely.

I don’t remember much emphasis on bow and finger position. I also don’t remember any of the pieces of music I worked on.

But I remember one lesson the teacher taught me.

I played a line or so of – whatever it was – and got it wrong. And again. And again. And finally I got it right. We both grinned.

Then my teacher said, not about me but about people in general. “you practice something over and over, maybe 100 times, and get it wrong, and finally you get it right. And what do you do? You throw a party. But really, you’ve still practiced it wrong 100 times and right only once. What you really should do next is practice it right 100 times, to set the pattern.”

I joke that that’s when I decided to quit violin. It really wasn’t, or at least, it wasn’t why, although I knew the chance of getting anything right 100 times on the violin was pretty slim. I switched to voice, which I described as a better fit for me because I “didn’t have double jointed vocal cords.” It was in voice lessons, about a year after I stopped violin, that I finally learned to read music.

But I think about what he said, a lot. I quote him, a lot. At work, to the parents of my patients. Not that I want them to practice anything 100 times in a row. But I do want them to practice “getting it right.” We spend time correcting children for doing things “wrong” and telling them what to do. But we often miss the part about setting a child up for success, over and over. For setting positive patterns in place.

I tell this story when I suggest taking pictures of my patients raising their hands, waiting in line, doing other hard things in the classroom, and then using the pictures as a reminder of the expectations. When I suggest practicing sharing or taking turns, practice a short, successful trip to the grocery store. It’s probably the closest to behavioralism I get.

Practice getting it right

IV

Coda

Find what works for you

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Some unpopular opinions about autism

2019-09-15T04:03:16Z

I am at a conference for professionals in the field of childhood developmental disability. I just brought the first openly autistic adult to speak in front of this group in the 6 conferences I have attended, possibly ever. (There were a few tokenized kids a few years back.) The professionals cheer that another state’s Medicaid covers ABA and refers families to Autism Speaks. My ideas and opinions about autism, informed by research and the autistic community, are unpopular here.

But that’s not what I want to talk about. I want to talk about some ideas and opinions I have about autism that seem largely unpopular among other autistic people including many vocal autistic advocates. And I’m going to say them anyway.

1) Autism is probably not 100% genetic.

No, vaccines do not cause autism. Plastic water bottles do not cause autism. Smog does not cause autism. Nor maternal Zoloft use. I’m not sure it even matters what “causes” autism in most cases. But there are a few clear non-genetic things associated with autism and we should acknowledge this.

Autism is definitely largely genetic. We have identified over 100 genes associated with a higher likelihood of being autistic. Largely, those genes are associated with a higher likelihood of having a neurodevelopmental disability, not necessarily autism. I call them neuro-developmental-behavioral genes. A change in one of them is associated with a higher likelihood of being autistic, having an intellectual disability, having ADHD, or having a speech-language disorder. Some people with some of these gene changes don’t have any known disability. Some of the gene changes are associated with medical conditions such as seizures, cardiac problems, even higher chance of developing certain tumors. That does not mean that autism is cancer or should be compared with cancer. It does suggest that some autistic people probably should have certain genetic tests due to higher chance of these medical things. With current technology, gene changes are found in about 15% of autistic people. Autistic people who also have an intellectual disability, seizures or other medical problems are more likely to have gene changes than autistic people who do not.

These are all true statements about genetics and I think they are really important to understand with nuance. Gene testing can’t tell you if a kid is autistic or how impairing autistic challenges may be. Gene testing of an autistic or otherwise developmentally disabled kid can sometimes provide useful information about that child’s health.

But did you know that babies who were born prematurely are more likely to be diagnosed as autistic than babies born at term? There’s an almost linear pattern. In the study I found, 1.2% of term babies were diagnosed. 1.7% of those who were slightly premature at 34-36 weeks, 2% of those between 27-33 weeks, and 3.8% of those born at 24-26 weeks (very premature) were diagnosed. You can’t convince me that most of these very preterm babies coincidentally also had genetic differences not seen in the babies born at term. And we know that prematurity often leads to brain changes associated with problems in motor planning, working memory, learning and attention. Some very preterm babies had bleeding in the brain causing structural brain differences. Is it so far-fetched to suggest that brain changes caused by prematurity can lead to autistic brains, just as structural and functional changes caused by genes?

And there’s a lot of autistic traits in some children who experienced a traumatic brain injury at a young age. I’m sure some of them would probably have been autistic anyway. But again, is it so unimaginable that structural brain changes caused by injury can lead to autistic patterns of thinking, feeling and behaving? Some people say, well, if someone has all the traits of autism but it’s from a brain injury, that isn’t autism. But what is autism, if not all the traits of autism? Does a person with difficulty in social communication and sensory processing who meets autism criteria not count if we can point to a specific brain change involved? Who does that help?

And last, a really deeply ironic one. You know what is associated with autism? Congenital rubella syndrome. That is to say, babies who were exposed to rubella during pregnancy. You know what prevents rubella? Here’s a hint. The R in rubella is the same R as in the MMR vaccine.

Do we, as an autistic community, have such a high need to distinguish ourselves from people who may have experienced an “injury?” to maintain our sense of community, culture and pride? Can I even use the term “we” here? I was 5 weeks premature. I see neurobehavioral differences in several relatives suggesting some genetic tendencies. I am Autistic. Does it really matter why?

2) “Function” and degree of disability are so variable and we have so much in common that we shouldn’t talk about differences between autistic people

I’m probably not phrasing this right. But there’s some talk in autistic communities about how a lot of the “problems” reported with autism are actually co-occurring conditions. And there’s some great take-downs of functioning labels that describe the same person in different scenarios so they sound like they have minimal support needs, if certain strengths are emphasized, and significant support needs if certain difficulties are emphasized. And. . . I believe there are many commonalities between autistics and that what unites us is more significant than what divides us. I’m not an Aspie supremacist and I feel kinship with all autistic people. But I think it’s disingenuous, and makes us seem willfully ignorant, if we refuse to acknowledge there are some real differences in type and degree of impairment between us.

Function labels are useless, ableist oversimplifications. Function is an interaction between a person’s abilities and the environment. I 100% agree with this. In now 7 years of professional work in the field, I have never once found the need to describe a patient using “high” or “low functioning” labels. Ever. The only times I utter those terms is when a parent or other professional uses them or asks me about them, and I do the best to move away from and debunk them in my response.

Most famously was when my fellowship program director, of 30 years experience in practice, literal book chapter author, etc, tried to make a teaching point out of two autistic patients of mine we had seen back to back. Both boys were preschoolers of about the same age. One was non-speaking, not toilet trained and spent much of the visit happily in repetitive sensory play. The second talked in sentences, used the bathroom and was engaged in pretend play when my advisor walked in. “Both the same diagnosis and look how much lower functioning [the first boy] is” was the summation of my supervisor. I then pointed out that the first child was a pretty easygoing guy who happily went shopping and out to eat with his family, getting restless like many children his age but not distressed. The second child had significant anxiety around change and transitions, did not tolerate the sensory input of the waiting room where he had occupational therapy, and had aggressive outbursts that put others in danger. The mother called me every few weeks. We had prescribed medication, something we try very hard to avoid in younger children. I don’t use terms like “high” or “low functioning,” but if I had to pick which of those boys was “functioning” better in his daily life at that time, it would unquestionably be the first child.

Nor is the current “support” system amazing. It’s meant to be a snapshot in time. In each of two areas, social communication and repetitive behaviors and sensory problems, does a person require support, substantial support or very substantial support? Of course, this has been oversimplified into “My kid has Level 3 autism” or worse, “my kid is level 3 autism” and basically used as a proxy for function labels or severity labels. I do think it can be used well. “This program is designed for students with significant support needs and has a high teacher student ratio” could be a useful statement. I have parents ask me about a school program or camp or social group and I say it is better matched to children with more/less significant support needs for their child. I think those are reasonable and respectful distinctions to make.

And here’s the thing, the unpopular opinion part. Yes, abilities and needs fluctuate depending on the situation. Yes, some people have very strong skills in some areas and greater challenges in other areas, making a global assessment nearly impossible in many cases. But. . . there are some objectively true things. A person who usually has access to fluent verbal communication really does have less difficulty with communication than one who often has periods when they are unable to communicate verbally, even if the latter person can reliably use AAC at those times to type. And both those people have less difficulty overall than someone who is never able to communicate verbally in sentences, mainly using phrases and 1-2 symbol combinations on AAC. And all these people have less difficulty than a person whose communication is currently gestures and vocalization but no symbolic communication at all.

All these people have value. All these people are deserving of communication support and to have their competence presumed. And yet, I think it’s actually OK to draw a distinction and to state outright that some people really do have more impairment in communication than others.

And even though everyone has a unique pattern of strengths and challenges, I think it’s also actually OK to state outright that some people have more impairment in more areas overall than others. We can still advocate for each other and celebrate our commonalities.

3) Autism isn’t all that special.

Autistic people are special. Of course, everybody is special. I kind of soaked up the Mister Rogers as a child but I really truly believe this.

And yes, autistic people often have different needs than non-autistic people.

But I think we, medically, and we, advocatedly (is this a word?) often do a disservice when we starkly distinguish autism from other neurodevelopmental and behavioral disability as a criteria for services and activities.

Sensory friendly performances should be for people who cannot access regular performances due to differences in sensory processing. This is true of many, not all autistic people. This is also true of many people with Down Syndrome, other conditions causing intellectual disability, anxiety and just plain “sensory processing disorder” to the extent that’s a condition we are permitted to diagnose.

Behavioral support programs (not ABA but there are non-ABA types of home, school or community support) should be accessible based on need, not diagnosis. For awhile I worked somewhere that children with autism diagnoses could have someone go to the home to help with significant behavioral challenges. Children with other developmental disabilities could get some services through this same agency but not this service. I had a patient with an intellectual disability, a genetic condition and the most significant self-injurious behavior of any child I have cared for before or since. I called the agency and begged. No autism, no dice. I thought about lying on paperwork. Years later, I am still wondering if I should have.

Social groups. These can be done very well or very badly, but either way they are often closed to children without autism diagnoses, even children with very similar challenges with the complexities of social interaction. Ten years ago, there were more social groups for kids with ADHD. Some of those kids were probably missed autism diagnoses, but not all. Where have all the ADHD groups gone?

Take a child who has a language disability, difficulty with social interactions, sensory processing differences and significant distress with change and transitions. This child makes a lot of eye contact, uses gestures, and is good at recognizing body language, and so does not meet criteria 2 of “deficits in non-verbal communicative behaviors used in social interaction.” We could debate whether using this as a mandatory criteria is good or awful, but right now, that’s how the book is written. So this child does not meet autism criteria. But really, pragmatically, how different are their needs likely to be compared to a child with all the same other challenges AND difficulty with non-verbal communication? Is their brain really all that different? Should access to therapies and services really drastically change based on this one criteria?

Do we really want and need all these specific, special “autism programs” to the exclusion of people with very similar brains and very similar needs? The autism congressional caucus is awful, but should we even have one? How about the Interagency Autism Coordinating Committee? The Autism CARES Act?

Decades ago, now, the autistic community recognized people with similar brains as “cousins.” There’s the “broad autism phenotype” of people with some autistic traits. I am saying this with all the autistic pride in the world, but maybe we should be considering these groups and advocate for people with all neurodevelopmental divergences. Power in numbers. Pulling together for common goals. Taking away some of the power of the medical leviathan to diagnose and categorize and exclude.

Experts often disagree if autism exists in a specific person. They seldom disagree if SOME neurodivergance exists or not. We can spend (waste?) a lot of time evaluating and reevaluating someone looking for The Answer. “Autism” is often more satisfying an answer than “speech and language disorder” and “anxiety” and “ADHD” and “sensory processing disorder.” But we can’t Occam’s Razer everybody. Can’t we just move forward with what we know?

Which leads to my last unpopular opinion

4) Maybe some people actually do “lose” a diagnosis that were accurately diagnosed in the first place.

Cure is garbage. Autistic brains don’t “grow out of it” or “recover” or any of that nonsense.

But. . .autism, currently, is diagnosed largely by observable behaviors. The diagnostic process doesn’t care what causes those behaviors and it largely doesn’t care what the person being diagnosed actually thinks or feels. This is of course, an awful way to diagnosis anything. When you are evaluating a non-speaking two year old, observable behaviors, or those reported by a parent or daycare provider, is about all you’ve got. There is no excuse, however, for ignoring self-reported feelings when evaluating an older child, teen or adult who is able to communicate about their experiences if only they were asked. And yet here we are.

So we have a criteria like “deficits in non-verbal communicative behaviors used in social interaction.” And we tell a person that making eye contact is really important and valuable for other people to want to have any interaction with them. Maybe we refuse to interact at all until the expectation of eye contact is met. Maybe we remind them 100 times a day to “look at me.” Maybe we reward them with gummy bears every time they make eye contact. Maybe we do this for years, at home, at school, in therapy sessions.

And then we evaluate the person again, and Lo and Behold, the person now makes eye contact! And they’ve learned to name some facial expressions because we gave gummy bears too for labeling emotions on flash cards. They don’t meet this criteria anymore! It’s a miracle of therapy!

And if we only evaluate the person based on if we see them make eye contact, not how hard they find it, or how it makes them feel, or how hard it is for them to listen to someone they are also looking at, then sure, they no longer meet this criteria. And if you have to meet the criteria to get or keep a diagnosis, then of course some people are going to lose the diagnosis over time.

Not most. Not many. But some.

And the same for the criteria of repetitive behaviors. Some people learn to stop doing obvious repetitive things. It doesn’t really change their brain, except it does because we now know that masking autistic traits is associated with higher rates of depression, which is a brain change of a different color, you know. Some people learn to hide their signs of distress with routine changes. The four year old who melted down in tears is now the 14 year old who gets anxious but bottles it up inside. Now the parents and teachers report that changes in routine aren’t really a problem. We even took away the visual schedule because it clearly wasn’t needed anymore. Never mind the kid comes home from school all snappy on days with a surprise assembly, sub or fire drill. That’s teenaged “bad attitude.”

So as long as autism is diagnosed based on observable behaviors, and as long as we therapize children to change these behaviors, is it really so shocking that some of the time, the behaviors change?

So there you have it. You can take away my autistic community card now and tell me I’ve sold out to the medical establishment. Except I don’t think I actually have. I advocate for respect for and support of autistic people and all neurodivergent people of all abilities. I just think we need to be somewhat more accurate and less absolutist about some of our claims.

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Prescribing Autistic Pride

2019-06-19T00:06:01Z

It’s Autistic Pride Day!

This fall, I will hopefully be presenting a workshop for my professional organization called “Prescribing Disability Pride”

The workshop has been more or less accepted but there are still I’s to cross and T’s to dot before it’s finalized. The topic is not only autism, but will include autism as a major point, because about half my patients are autistic and probably that’s about the same for most of the conference attendees

My co-presenters are all disabled people who work for disability organizations. Actually, I believe that all of them work for organizations that are run by a majority of disabled people. Two organizations require this in their bylaws, and one is self-employed, by herself, a disabled person.

One co-presenter is openly Autistic. One is not, but I met her at Autreat, an autistic run autism conference.

That’s a script, by the way. “Autreat, an autistic run autism conference.” I pretty much always describe Autreat that way. I can almost hear the comma. “Autreat, comma, an autistic-run autism conference.”

How do you prescribe disability pride, more specifically autism pride?

First, why should we prescribe disability and autism pride? When I give talks and presentations, I always have a slide I call the “why should I care?” slide. It doesn’t say this on the slide. Maybe it should.

We should prescribe disability pride, because an identification with disability community is associated with higher self-image in disabled people, including invisibly disabled people.
We should prescribe disability pride, because attempts to “mask” autistic traits is associated with mental health problems and suicidal thinking
We should prescribe disability pride, because ABA therapy is associated with higher rates of post-traumatic stress symptoms
And because ABA therapy is the systemized attempt to get autistic people to “mask”
And because people in my field don’t read any of these studies
That’s why we should care

Obviously, I can’t actually type out a prescription for Autistic Pride, the way I can type out a prescription for Ritalin or Zoloft and have it filled at any pharmacy, or a prescription for speech therapy and have the patient seen by a speech-language pathologist next week.

And actually, I think promoting disability pride and autistic pride comes as much in what I don’t say as in what I do.

I don’t recommend ABA
I don’t recommend encouraging eye contact
I don’t use words like “bad news” when I talk about autism and disability
I don’t imply that everything will be OK if only the child stops being autistic
I empathize with the child, who is having a hard time, over the adults to whom the child is giving a hard time

But there are things I say, also

I talk about the value of scripting and stimming
I deliberately use words such as “autistic” and “disabled”
I talk about learning to live with your autistic brain and about planning for an autistic future
I recommend typing, AAC, fidget toys, classroom accommodations, workplace accommodations
I preferentially send families to websites written by autistic people
I preferentially recommend books written by autistic people
I talk about autistic adults. This means I have to say, over and over, things like, “she’s an autistic social worker. I think she also is a parent of autistic people? But she’s autistic and she wrote this

Disability Pride is best taken in small doses
Too high a dose can often lead to symptoms of rejection
So I prescribe carefully, a few words here, a recommended book there

It may be more like an inoculation than a treatment
How can I inoculate my patients against the overwhelming negative messages they encounter from home, school, therapists, other professionals?
How can I inoculate their families against the negative messages they encountered from society and the media, long before their children were even born?

Or maybe it’s a virus. Can I, and a group of disabled activists, educate my co-workers of the value of disability pride? Will any of them go home and try out even a little of what they learned with their patients? Will any of them incorporate even a little of the idea of disability and autistic pride and community into the next talk they give their students? Will any of these students grow up to prescribe disability pride themselves?

Can we dare to dream of a world where the whole idea of “prescribing autistic pride” wouldn’t ever even be needed?

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Educating autism experts about empathy

2019-05-02T02:13:33Z

Many autistic people are sensitive to noise, including the sound of applause. In the 90s, autistic run autism conference Autreat switched from audible applause to silent “flappause.” This portmanteau of “flap” and “applause” served dual purposes. One was the obvious benefit of being silent. The other was a reclamation of hand-flapping, from a pathologized symptom to a proudly expressed gesture of joy.

Flappause has morphed over the years. It has spread to other autism and disability settings and even some mainstream settings. It sometimes is substituted by ASL, or Deaf applause, which is also silent. Deaf applause is produced with hands in the air, fingers spread and shaking, and is visually similar to, although culturally distinct from the dance technique called “jazz hands.” Flappause is generally more of a flapping motion, typically with hands turned inward towards each other, and often closer to the face than ASL applause. Autreat itself recognized the need for audible applause as an accommodation for a blind conference presenter.

So there is a giant international autism science conference that occurs annually called INSAR. I’ve never been there and don’t plan on starting. Autistic people who attend often post links to interesting talks and abstracts. There was a really crucial one last year showing a link between masking of autistic traits and suicide. The autistic community has been talking about that all year and asking for more research on both masking and suicide in autism. Mostly, INSAR strikes me as a pile of pathologizing of autistic people.

Apparently last year, audiences were asked to show appreciation by flappause rather than applause, to accommodate autistic people in attendance with sensitivity to sound.

Apparently, this did not go over well last year among many influential (presumably non-autistic) scientists.

Catherine Lord is the person who designed the most commonly used tool to diagnose autism. She gave her objection, “The flappause seemed to serve as a reminder of a political point of view that distracted some of the speakers from accurate reporting of their data.” My translation is that autism researchers don’t like being reminded that autistic people are people with their own feelings and agenda. She also brought up the concern that flapping would distract other autistic people. Which, competing access barriers is a thing, and could be addressed if needed. If there had been any hint from any autistic person that flappause would cause this access problem.

Others researchers complain that they can’t determine which talks were best received by the audience if they can’t hear the applause.

I read a suggestion from a (presumably) non-autistic researcher that autistic people might feel mocked by others flapping. If there had been any hint from any autistic person who felt that way.

One researcher wrote a whole article in Psychology Today complaining that all this was done to accommodate a very tiny percentage of attendees, most of whom, surely, would already be wearing earphones or headphones if bothered by noise.

Then there’s the argument that flappause is inaccessible to blind presenters. Which is true. Competing access barriers is a thing. And was solved by a small group of autistic people in the 1990s by creating an accommodation, not banning the practice entirely. And which, again, there has not been any hint from any blind person that is experiencing this access barrier at INSAR.

Overall, the objections to flappause seem to boil down to a desire for (presumably) non-autistic people to continue to present pathologizing scientific research to each other, and to experience auditory positive reinforcement. And the desire to continue to do this while thinking about the impact, sensory, emotional or otherwise, on actually autistic people, as little as possible.

And these people are the generally acknowledged leaders in autism research. The experts.

We’re having a crisis of autism experts in my neck of the woods as well. Pennsylvania has long had a program called Behavioral Health Rehabilitation Services. It’s abbreviated BHRS. Everyone calls it “wraparound therapy” or even just “wrap.” It’s designed for children with significant mental health needs that cannot be met with other therapies such as weekly outpatient counseling.

Wraparound has always been of variable quality, but the idea is reasonably sound. Services are meant to be provided in a child’s daily settings. If there are challenges at school, the wrap team goes to school. If there are challenges at home, the team comes to the home. They can provide wraparound support in Girl Scouts, at the grocery store, on the playground. The idea is to “wrap around” to wherever support is needed. Get it?

Support can take multiple forms. Children are prescribed an appropriate combination of a BSC, or behavioral consultant, a TSS, or therapeutic support staff, and a MT, or mobile therapists. BSCs are supposedly credentialed experts who evaluate behavior and generate a plan. TSS workers, less educated and with higher turnover, are to carry out the plan. A mobile therapist provides the same sort of therapy for anxiety, depression or other mental health needs that one might otherwise receive in an office, but they are, well, mobile.

So wrap has always focused on behavior to some degree and used some behavioral approaches. For example, a plan to support a child who grabs toys may include positive reinforcement such as praise when the child shares, or use of “time out” when the child grabs. Similar strategies may be used for challenges such as hitting, or running off in parking lots. But until recently, there was also a lot of non behaviorizing support in good wraparound programs. A BSC may visit a school and create a visual schedule for a child. TSS workers could attend daycare or school with a child, providing redirection or a break if needed. This has kept many children in regular education classes, daycare programs and summer camps that otherwise would not have had sufficient staffing to provide this level of support. Real-life support has improved safety in stores and playgrounds, allowing children and families to have better experiences in the community. Children with selective mutism or who struggle to leave the house have gotten counseling for anxiety in their safer spaces.

But a year or so ago, the program was changed. Staff working with children diagnosed with autism had to have certain certifications. The initial consequence seemed to be longer waiting lists for autistic children compared to those with other diagnoses. Then I saw a number of children whose services, clearly needed, were delayed for months waiting for an autism (or not) diagnosis. Previously, a team could move forward addressing anxiety, impulsivity or other symptoms regardless of whether the underlying diagnosis was autism. Now the children were kept in limbo.

Most alarmingly, though, are the children I’m seeing pushed into ABA programs. DTT, tabletop, intensive ABA programs. This was not really the case a few years ago except for a few specific agencies that advertised this up front. What fascinates me, infuriates me the most are the children pushed into these programs over the explicit objections of their families, who have other priorities. A family whose most significant concern is safety in the community, a wraparound target if ever there was one, sitting at a table and matching. For hours. Families who want help teaching a child to share with, rather than hit a sibling. Families whose child’s disruptive behavior places them at risk of being asked to leave daycare. They are told to accept the program they are given or receive no services at all. Some are choosing no program at all.

And all this seemed to happen after someone sufficiently influential (and presumably non-autistic) decided that clinicians in the autism program needed autism certification.

Less listening to autistic people (and in this case, their families.) Less actual, tangible support. Less empathy.

So much for the experts.

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The Unexpected Autistic, circa 1856

2019-04-20T03:41:56Z

Now that I have a smart phone I can almost sort of use, I’ve taken to browsing Project Gutenberg for something to read on the bus. It’s low risk, since I can read a few pages and then quit if a book doesn’t catch my interest. I’ve read some instructions for toy building. I skimmed through several books about girls at boarding schools in unexpected places. I’ve gotten about halfway through Pride and Prejudice. And then I stumbled upon The Daisy Chain and was hooked on the first page by the adolescent autistic hidden there.

The Daisy Chain was written by Charlotte Yonge in 1856. I would describe it as a Victorian morality play. It’s ostensibly a family story about the 11 May children, who range in age from newborn to college as the book begins. But as it recounts through the daily life of small children, school boys, smitten young adults and worried parents, there is always the heavy hand of Lessons. Lessons about religion and faith and humility and the role of women in the household. Yonge subtitles the book, “Aspirations” and describes the story as an attempt to “to trace the effects of those aspirations which are a part of every youthful nature.”

Interestingly, Yonge is actually known for her portrayal of disabled characters, and apparently had an “invalid friend.” Perhaps most famous is Charles in The Heir of Redclyffe. He is not the most sympathetic character, and has minimal characterization beyond that of the invalid. I read it. I’m not sure why. Oh, I read books with disabled protagonists, that’s why. There are also apparently disabled characters in The Pillars of The House, which I’ve just started.

Two characters in The Daisy Chain have acquired physical disabilities. I presume one does not need “spoiler alerts” for events which occurred in the first chapter of a book published in 1856, so I will go ahead and spoil that the book opens with the parents, oldest daughter Margaret and new baby involved in a carriage crash. Mrs May is killed. The infant is unharmed. Both Margaret and her father are seriously injured. The rest of the plot follows from there.

Margaret sustains a spinal cord injury and spends the rest of her story in bed. She becomes the emotional center of the family, every thought, feeling and event brought to her bedside by siblings eager for her council. I’ve found an essay written about her on a site looking at disability in nineteenth century literature. (http://www.nineteenthcenturydisability.org/items/show/33) I first grumbled over Margaret as a retread of Katy, in What Katy Did, but it turns out What Katy Did was written in 1872, making Katy more of a retread of Margaret. For those who don’t know, Katy was a tween who sustained a spinal cord injury swinging in the barn without permission. She spends several years in bed, being instructed in the dual arts of cheerfulness and of running a household from bed by her invalid cousin Helen who tutors her in the School of Pain. Katy then recovers, gets out of bed a better person, and her cousin goes back home and continues to be an invalid. I suspect both girls were prototypes for Pollyanna, whose injury is also seemingly cured through patient rest and optimism.

I found Dr May’s impairment potentially more compelling. He injures his hand. You can see the intrigue for me as a doctor with a hand disability. This being 1856, and his being a doctor and not a surgeon, he doesn’t really need his hand to complete his work because he doesn’t do any procedures. He doesn’t really have any effective treatments, come to that. However, he does need his hand to drive the carriage on his rounds. You can see the intrigue for me as a doctor who doesn’t drive due to disability. But Dr May and his feelings about his hand and his new dependence were a minor subplot at best.

The hidden disability treasure of the book is Etheldred. She has the opening lines. She is critiqued for her “impetuosity” in the second line, described as “impatient” by the impartial narrator in the third. She’s about 15 at the start of the novel, a bit younger than the paragon Margaret. She reads Greek better than her brother who attends school. She needs glasses and isn’t permitted to have them, because her father is sexist. And she is so blatantly, delightfully autistic.

Literary critics have described her as a precursor and role model for Jo March, with a shared awkwardness and difficulty meeting expectations of femininity, but the similarities seem superficial to me. Ethel is not so much impulsive as dyspraxic. She can never find anything, and leaves a room in disarray when she searches. She can’t figure out how to open a window, keep her skirt out of the mud or pin up her hair. Her father describes her as having two left hands, and needing to return to “infant school”l to learn left from right. Over time, Ethel’s oldest brother teaches her to thread a needle and tie a bow. She praises his methods, noting that others “show, but don’t explain the theory.” Ethel wriggles, blinks, cracks her knuckles and wiggles her toes.

In a letter, her mother describes Ethel’s foibles as her “harum-scarum nature, quick temper, uncouth manners, and heedlessness of all but one absorbing object.” Ethel’s absorbing objects are first Latin and Greek, and later a school she wants to found for children in the poor village nearby. She is caring and compassionate, although she worries she is “unfeeling” when she seeks the return of a regular routine after the family tragedy. Her mother had found hope in Ethel’s “entire indifference to praise” and her drive to work up to her own high standard, “not always with good temper, but perseveringly.” Persevere is but the other side of the coin of perseveration.

Ethel spends half the book learning to read faces. Her difficulty is remarked on, specifically, by Ethel herself and her family. Her sister tries to blame her problems on her nearsightedness, but her brother points out Ethel’s attention to visual detail in her drawings. My favorite Ethel moment comes when she wants something from their father and her brother advises it is not a good time. She thinks it through. “I am glad you were there, Ritchie; I never should have thought of one time being better than another.”

The years go by in The Daisy Chain and its sequel, The Trial. Ethel starts her school. She takes over the household, building regular routines. In the sequel, she is a less central character than her younger sister Mary, who idolizes her. It is Mary, not Ethel, who seems to have sensory problems with clothing. Ethel has grown into a competent adult.

Of course, the diagnostic term “autism” was unknown in Ethel’s day. Her family treated her as impossible, not invalid. Had autism been known, I wonder if Yonge would have also discounted a disability label for Ethel, on the grounds that the character was “just like” some real-life relative, friend or acquaintance. The creators of the Big Bang Theory assert that Sheldon can’t be autistic because he is based on real scientists they know. Those real scientists are probably autistic.

So, delightfully, is Ethel.

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The Single Empathy Expectation

2019-01-12T21:54:15Z

I meet them in the waiting room, my patient and his mother. He’s four, extremely active, and doesn’t talk much. He comes into the room, dumps out piles of toys, and starts sorting them. And throwing them. He removes his shoes and throws them too. She and I are adults and are able to sit still, more or less. We keep our shoes on. We both talk in sentences.

And she starts telling me about him.

I don’t think it’s too much of a stretch to assume that she expects I will empathize with her.

And, sure, I do. He hits. He doesn’t sleep at night, and so no one at home is sleeping much at night. His hyperactivity makes it difficult to complete a shopping trip. He’s at risk of being asked to leave his daycare program, which affects her ability to continue working.

And she keeps going. He prefers to play by himself. He says “ow!” when he has his hair cut, and tries to get away. They can’t take him to fireworks. He hates going on vacation.

And she expects more empathy from me towards her.

And sure I have empathy right now. I’m full of empathy.

For the kid.

And no one expects that.

I often prefer to be by myself. I hate haircuts and haven’t submitted myself to one in decadesI define adulthood as the state where no one can force me to watch fireworks. (https://nightengalesknd.dreamwidth.org/99203.html) . I don’t go “on vacation.” I travel when needed for work, and I visit very specific familiar places for pleasure. The joke is that my favorite family vacation was the one where my parents went without me, my sophomore year of college.

Sometimes I tell her some of this and sometimes I don’t.

And when I do, I seem to get confusion. I assume that is because her perspective is the more mainstream one, the more typical one, and so she has slotted me into the category of people like her. I mean, I’m guessing here, but that’s my best hypothesis.

I see this online, too. Non-disabled parents of disabled children seem really confused when another adult identifies with and empathizes with their child. This is even more common when the adult is not immediately perceived as disabled, or disabled in a way that is relevant to their child. The idea that a typing stranger, perhaps college educated, could share experiences with their non-speaking, meltdown having child just doesn’t seem to compute. And attempts to express this empathy are often met with distrust and anger rather than gratefulness.

And in professional settings, this phenomenon is rampant. I recall the local autism conference where the school professional described the junior high school student who carried all his books around with him all day, often dropping them, and was the subject of ridicule. We were supposed to recognize how hard it is to help children like him succeed in mainstream settings, and to want to learn how to help children like him. . . not be like him. For their own good. I was the child who carried around too many books, often dropped them, and was the subject of ridicule for that and many other reasons. I almost started crying right there, in the audience at that conference.

Out of empathy for the child. And from the lack of it from my supposed professional peers.

There has been a lot of talk, lately, in autistic spaces, about the “double empathy problem.”

I’ve tried to trace the term back and the first reference I can find is a 2012 article published in Disability And Society by Damian E. M. Milton. Dr. Milton is an autistic lecturer and research consultant. (Milton, Damian EM. "On the ontological status of autism: the ‘double empathy problem’." Disability & Society 27.6 (2012): 883-887.)

The double empathy problem is briefly summarized as follows. Autistic people often have trouble figuring out what non-autistic people are thinking or feeling. Not trouble caring how people feel, but trouble guessing. That’s often described as a problem with empathy. But, it turns out, non-autistic people often have similar trouble figuring out what autistic people are thinking or feeling. In other words, people find it harder to empathize with those who behave, think, perceive and process differently from themselves.

This should be evident to any autistic person who has ever read the autism diagnostic criteria describing so much of our language and behavior as “non-functional.”

One would hope that it would also be evident to non-autistic people, but it doesn’t seem to be. The world is created by and for non-autistic people, and they tend to assume others are like them, absent overwhelming evidence to the contrary.

So language or behavior is described as “functional” if it makes intuitive sense to the people describing it, people in the neuro-majority. Otherwise, it can be dismissed as “non-functional,” even if the functions are described in explicit, exquisite detail by neurodivergent people.

Of course, most neurotypical people have never stopped to listen to or read these explanations. This is not too surprising, or disappointing, for the parents of a newly diagnosed or not-yet diagnosed young child. This should be considered inexcusable for those considering themselves professionals in the field, particularly those professionals who then seek to educate others.

There was a 2017 study where neurotypical people were asked their impressions of strangers they encountered on video, audio or by reading the transcription of their words. (Sasson, Noah J., et al. "Neurotypical peers are less willing to interact with those with autism based on thin slice judgments." Scientific reports 7 (2017): 40700.) Some of the people being rated were autistic and some were neurotypical. Interestingly, a transcript of autistic peoples’ words did not decrease their likability. Audio and visual clips did. Very quickly. Within 10 seconds. Even after simply viewing a still picture of a video clip.

That’s how quickly the non-disabled judge us and find us wanting.

And that’s data piled on decades of data from attitude questionnaires and implicit bias tests. Non-disabled people, overall, hold negative attitudes about disabled people. If they know we are disabled, they make negative assumptions based on that knowledge. If they do not know we are disabled, they view us as inferior non-disabled people, without considering that we may be disabled, and that we might have a different experience or perception given the same circumstance.

The social situation is the same. I loved it as a kid. How could my kid hate it? The vacation is the same. I love it. It’s a famous destination spot, loved by millions. How could my kid hate it? But my kid is a little kid, with some obvious problems like not talking. How could an adult who otherwise seems like me hate it?

Her father is in graduate program, in a field where I have some background knowledge. We talk about it, a little. I cite literature in his field that relates to his child. He’s probably more tuned into his kid than most of the parents I encounter at initial visits. He tells me his child doesn’t want to practice drawing or writing.

“Why should she?” I ask.

I am met with a confused look. At least, I read the look as confused.

“She doesn’t find it fun. It’s difficult for her. What reason should she want to practice a skill that she finds hard and doesn’t get any inherent joy from? Because you want her to? Because it will help her be more successful at school? She isn’t motivated by those things. Most little kids aren’t.”

To me, the child’s motivation, or lack thereof, is obvious. I mean, I could be wrong. I could be really, really wrong. I’m just guessing. I think I’m empathizing and that my explanation, my translation, makes sense.

Perhaps I’m over-confident that my interpretation is the most right. After all, I read a lot of behavior assessments that try to interpret behavior, that leads to different conclusions than the ones I reach. The teen says “I’m OK, I’m OK” in stressful situations. This is interpreted as seeking adult attention. The child runs from the room when told to do schoolwork. This is interpreted as “avoiding a non-preferred activity.” I think the first kid is anxious and the second, with a known learning disability, was brushed off when asking for help. The child who won’t write unless someone moves the pencil, “hand over hand” can’t actually hold or control a pencil to form letters. But he is also described as “avoiding a non-preferred activity.” I avoid activities I can’t do, also. Don’t most of us?

Often I tell my patients, “you are the only person inside your brain and your body.” I particularly encourage those who are old enough and have symbolic language enough to participate, although I also respect their need to play, stim, use electronics, as ways to get through the visit. And some don’t want to participate or aren’t ready, and may refuse. I explain that they can deputize a parent to talk during the visit, but that I hope they will interrupt or correct us if we get something wrong. About school. About anxiety. About sleep. About side effects of medication. Because we are just guessing. I want my patients to hear me say that. I want their parents to hear that as well. Even if a parent knows a child well, even if I read neuroatypical well, even if our guesses are extremely well educated, they are still just guesses.

“You just get these kids,” a mentor said to me early during my pediatrics training, after she had come to me for help with a disabled patient. https://nightengalesknd.dreamwidth.org/57086.html. I don’t agree with everything I wrote at the time, the time being 2008, but I do agree with my role trying to “try to serve as a sort of translator from autistic to neurotypicese.”

The Double Empathy Problem and the Single Empathy Expectation are intertwined. People have more difficulty empathizing with those who are different from them. People in the majority tend to assume that other people are similar to them. They then have difficulty empathizing when the person who appears similar is in fact different.

The parent and professional discourse is conducted almost exclusively in the third person. “He does” this. “They do” that. When it is conducted in the first person, it often takes the form of “her behavior is so hard on me.”

When a professional breaks this mold, as I often do, it can lead to surprise and confusion. “I experience” this. “We [probably] feel” that. I try to have empathy for the people I am confusing.

I do have empathy for the parents and other professionals. At least, I think I do. Because I am trying to meet their expectations. Because I try to be a caring person.

But empathy for the disabled person they are describing is often so much more natural and so much easier.

And so I reach out to other disabled disability professionals, to empathize with our shared experience with the single empathy expectation.

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Amplifying Autistics

2018-11-01T13:25:03Z

I’ve stopped reading books about autism written by non-autistic people.

Neurotribes? I’ve read two dozen reviews. I haven’t read the book. Yes, I know it’s well researched and well written. I’m not convinced it has a lot of information that would be new to me. And I’m tired of reading books about autism written by non-autistic people. Also, I’m tired of the calls for quotes on autism now going to Steve Silberman. Yes, he’s done some good ally work. Yes, it’s better than the quotes going to Autism Speaks. No, it’s still not OK.

Uniquely Human? I skipped that one too. I’ve read other Prizant. He talks a good talk, but he still clearly sees non-autistic ways of communicating and playing as superior. He’s not as much of an ally as he tries to say he is.

I still read research articles written by non-autistic people. I have to stay up to date for my work. I don’t always know the neurotype of researchers, anyway. Maybe someday, I can extend my policy to research.

But I’m very loudly not reading any more books written by non-autistic parents and professionals. When people ask if I have read this book, or that one, I say no and tell them why. Of course, I’ve usually read half a dozen reviews written by autistic people and can generally have an informed conversation about the book. Which I haven’t read and don’t plan to.

For every piece of information I have to share with a parent of an autistic child, I look for an autistic source. Sometimes I find one, sometimes I don’t. Anyone recommend a good book on toilet training by an autistic person?

And of course, to some extent, my job description is “sharing information about autism with parents of autistic children.”

Just getting started? Try “The Real Experts.” All the authors are autistic people, writing about what they wish their parents had known when they were kids. Oh, and most of them have blogs for further reading.

Need some help with visual schedules? Try Judy Endow’s blog. She’s an autistic LSCW. Is she the parent of autistic kids? Um, I think so, but she’s an autistic LSCW who does mental health counseling and school consultation. That’s why you should read her. She has the visual support 102 level stuff, like how to make a schedule if things keep changing. Warning, once you start reading her blog, it’s sort of a rabbit hole in there.

What about echolalia and scripting. What about echolalia and scripting? It’s language. No really, it’s language. It’s a way of building, using and developing language. You might need to make a translation guide. Also, you might want to think about using your kid’s skill in scripts to help write his own scripts. No, telling her to “stop scripting” isn’t going to give her more spontaneous language. It will tell her that you only care about what she has to say if she says it your way. Here, read some of Bev Harp’s stuff. She’s an autistic social worker who scripts. Yes, I said, she’s an autistic social worker who scripts. No, the two are not mutually exclusive.

Karla Fisher is on the case with specific suggestions to improve your kid’s IEP or 504 plan. Yes, she’s autistic.

Pushing eye contact is a bad idea. No matter what your kid’s speech-language pathologist says. Mel Baggs here to tell you more.

And don’t stop your kid from stimming, either. No matter what your kid’s behavioral therapist says. Julia Bascom here to tell you more on that one. Start with Quiet Hands, the blog post that started the revolution. Then read Loud Hands. That’s the revolution in 408 pages.

How do you tell your kid about autism? Ask ASAN. Or Landon Bryce.

Should you tell your kid about autism? Yes. Here, Chavisory tells you why.

I’m not openly autistic at work. One reason is to keep myself from becoming the story. The story shouldn’t be “one unique autistic person who holds a professional job and can explain autism from the inside!” But that’s what I’d risk becoming. Instead, for right now, I’m trying to amplify other autistics. Not one unique autistic person who holds a professional job and can explain autism from the inside, but the whole collection of autistic people who write thoughtfully on aspects of autism and can provide specific information and strategies based on their experience and expertise. Not all are employed, but many are, and not just as computer programmers, either.

Envision an autistic future for your child, I say, nonverbally, with each recommendation. Envision an autistic future for someone who scripts, who doesn’t make eye contact, who flaps, who may need support moving forward.

And I feel pretty good about this way of autistic speaking, too.

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A closing letter to JAMA

2018-10-02T02:08:38Z

This isn’t an open letter because I intend to send it, or a version of it. The opposite of an. Open letter should be a closed letter, but, see, it’s not closed yet, because I haven’t sent it yet. Ergo, a “closing letter.” How about them neologisms?

JAMA is the Journal of the American Medical Association, and it’s generally considered one of the most exclusive, prestigious peer reviewed journals anywhere. Recently, the subsidiary, JAMA Pediatric posted a about the horrible things electronic medical record systems are doing to the doctor-patient relationship. He blamed the EHR (Electronic Health Record) for the decreased time allotted to visits, which isn’t actually the computer’s doing, and then blamed the program on preventing him from interacting with his patient, making eye contact, and taking away his empathy. He described this as "Acquired Physician Autism."

People protested. JAMA predictably, sadly, drafted a statement apologizing for language that was "painful for families and their children." Which I mean, yeah, not an OK thing to have done to autistic children. But the harm in describing autistic people thusly, in a major medical journal, goes far beyond the impact on the children.

I’d like to write a letter to JAMA, “As an Actually Autistic doctor, How Dare You!” And yet, I won’t. I can’t be openly autistic in a letter to JAMA, not when JAMA thinks it’s OK to describe autistic people thusly. And so here is a draft of the letter I think I have to write.

“I am a multiply disabled physician specializing in the care of children with developmental disabilities. Like many in the disability community, I was appalled to see the language published in your recent article

As so often happens when I read negative, stereotypical, ableist things about people with disabilities in medical journals, I am horrified and saddened, not that an individual felt that way, but that no one in the peer review or editing process even recognized the problem. It was yet another sad reminder what my “peers” - other physicians - really feel about my peers - other people with disabilities.

Even JAMA’s apology, to “families and their children” (https://themighty.com/2018/09/jama-pediatrics-physician-acquired-autism-peter-loper/)compounded the error. What of adults with autism? What of autistic doctors and allied health professionals? The Good Doctor is fiction, but the existence of autistic doctors is real and the lack of empathy is a myth. The especial irony is that a well designed and implemented EHR offers so many benefits to autistic and other disabled health care providers.

The typed interface is a huge benefit over written notes for many with low muscle tone, dysgraphia and other disabilities affecting handwriting. Eye contact is not actually necessary for effective communication (we are, after all, able to manage patients by telephone) but it is expected by many neurotypical patients in the U.S. My laptop goes on my lap, and I can look at patients directly over it. When I had a paper chart, I was forced to look down.

No more the hour-long search for the lost chart, or misfiled radiology report or consultant note within the chart. What a benefit for those doctors who are autistic or have ADHD or learning disabilities that affect executive function and organization.

The EHR does not force physicians into 15 minute visits, too short to establish and maintain rapport. This comes from policies set by insurance and administration, is contrary to good patient care, and we should fight back. 15 minutes isn’t enough to tackle a tough problem, no matter how we chart about it. A good EHR reminds us of patient nicknames and hobbies, flags gender identity for front staff and can include a patient photograph. I can personalize the typed visit summary I give each patient summarizing the plan we created together. Time spent handwriting prescriptions can be saved e-prescribing while answering the “one last question” so many families have. None of these were possible with paper charting.

EHRs don’t turn neurotypical doctors autistic. But they can help all doctors, autistic and otherwise, to handle data so we have more time and freedom to connect with people. And if EHRs did turn doctors autistic? Disabled doctors contribute to the diversity of the health care workforce, bringing experience and empathy to the field we should value, not deride.

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New and improved access barriers

2018-07-11T04:14:46Z

There are lots of reasons that disabled people continue to encounter barriers to access, even though the ADA was passed over 25 years ago and Section 504 of the Rehabilitation Act dates from 1973. There are some, not many, but some legitimately historic buildings. There are buildings that have not been renovated since 1990 and can not be made accessible by readily achievable methods. There are small stores with one step to enter and no place to put a ramp without blocking the sidewalk. There are legitimate conflicting access needs, such as a coworker who needs a service dog and one with a severe dog allergy. NFB experiments non-withstanding, there really isn’t yet technology to make a car drivable by a blind person.

These true barriers are of course outstripped by attitudinal barriers. The inaccessible entrance is unlocked but the accessible door, around the back, is only unlocked by a request to security. The elevator is being used as a storage space. The clothing racks are too close together and it would be “readily achievable” to create space for customers to move, but the space is not created. Here’s one I encountered a few weeks ago at a Starbucks. The counter was accessible. Seating was a step down. There was a door to the outside to the seating area. However, staff would not open that door for me. Here’s one I encountered a few years ago at an apartment building. The main entrance had three steps to the elevator. There is an accessible entrance to the building through the garage. However, only tenants with cars would be given access to the garage. Job postings for professors list “walking” as an essential function, as though a person can’t teach Spanish or economics from a seated position. I recently spoke with a librarian who has difficulty standing. She was offered a job in an academic library but they would not provide her with a chair when she taught classes, or at least, not without substantial documentation from a physician about her need. It’s still really really bad out there.

But what gets me the angriest, in some ways, is the creation of new barriers.

Here’s a few personal examples. I have difficulty with touchscreen technology. I never used to have difficulty paying with a debit card, picking up a prescription or voting. These now require touch screens, or require me to beg staff to help me operate a touch screen. Some staff are told they are not permitted to sign for someone as an accommodation. They have not been trained in what to do if a customer cannot use the touch screen independently. I suppose I am supposed to bring someone with me to the pharmacy to pick up my prescriptions for me. I used to step up to the counter at the airport and be checked in. I now have to convince the staff that I cannot use the self-serve kiosk and that I will not gain the ability to use it if they “show me.” I went to the CVS minute clinic and had to find a pharmacy staff member to sign me in, as the NP did not know a patient had arrived without the touch screen system. Now, there were not really touch screens in 1990. I know, because I was there. So every touch screen system that does not have an alternative is in violation of the ADA. (A push button system may be an alternative for some people. A voice system may be for others. A sign stating that staff will assist customers as needed, and staff trained to assist, would be a third.)

There are other reasons I stopped driving, but one factor is the decreased availability of cars I could shift out of park. I could shift many of the older cars. Then they improved the system by requiring the driver to push a button and keep it pushed in while moving the lever. I finally had to get an adaptive device to press the button for me. This worked for my car, but I couldn’t rent a car. There was no way to request a specific model of rental car that I knew I could shift.

Right now, I can use my insulin pump and glucose sensor. More and more of the systems are moving to touch screens. I keep a syringe as backup. I can use a syringe. I cannot use an insulin pen, which are more widely available and considered the newer and better option.

No one purposefully made these systems inaccessible, but no one seemed to have considered that their new design may create access barriers for people with disabilities.

So I don’t have a personal horse in the straw race, but I have a lot of empathy for those who do. Recently, the city of Vancouver voted to outlaw use of bendable plastic straws within city limits. Starbucks is going to discontinue use of single use plastic straws. Other cities and restaurants are soon to follow. The idea is that plastic waste is hurting sea wildlife. Even though I am given to understand that plastic straws are a very small component of the plastic waste that enters the oceans, straws have become a major target for environmentalists.

There are disabled people who cannot really drink liquids without a straw. And in particular, a bendable straw. I just learned the bendy straw was created as an accessible tool so people could drink from different positions. Now, there are other straws out there. For example, Starbucks is offering a paper straw for customers on request. And this will work for some people. But some disabled people drink so slowly a paper straw would disintegrate, or are at risk of chewing on and choking on straw parts. They also don’t position as well. Pasta has been proposed, which may work for some people. Others may be allergic to the ingredients, and again, they don’t bend. There are metal and glass straws, which need to be cleaned and can cause mouth damage. They also don’t handle hot beverages or soups well. And who is supposed to clean these reusable straws? The restaurant? The disabled person themselves or their caregivers?

So disabled people write out against the straw ban. They suggest that straws could be opt-in, offered but not automatically provided, or available on request. And they get met with the above suggestions. The assumption is that the restaurant will of course keep bendy straws on hand for disabled people and won’t gatekeep who needs them, just like pharmacists never gatekeep who needs what prescriptions and no one harasses walking people who use accessible parking or bathroom facilities. Or they suggest disabled people bring their own straws, because it’s not like we don’t carry enough stuff around with us. And that we all have dishwashers and caregivers. One commenter suggested anyone who can’t wash a straw should have nursing provided. I mean, people can’t get sufficient nursing hours to help with ventilators. Someone suggests straws be made available by prescription or that doctors issue a straw license.

Because disabled people can’t decide for themselves what they need to drink, and doctors don’t have enough to do without filling out forms certifying that patients deserve access to straws. Oh, and anything certified as a medical device almost invariably becomes more expensive and harder to find. I can very easily see a dystopian future when bendy straws are only available through mail order medical supply companies which require an updated doctor order every six months. That’s the reality for my diabetes supplies already. And my insurance company chooses the specific supply company. And I can’t order them online.

No one enacting the straw bans likely set out to make life more difficult for disabled people. But they haven’t exactly stepped forward to ensure disabled people can continue to access liquids in restaurants that sell them.

We’re used to lack of access and having to plan every meal, every drink, and bring all sorts of supplies and equipment with us, and dealing with gatekeepers. But what’s galling here is the creation of a new barrier that did not exist before. The ADA mandates removal of barriers that are readily achievable and provision of reasonable accommodations that do not create a fundamental alteration of the services provided by an establishment. They’ve had to do this since 1990. How are cities and shops getting away with adding new ones in 2018?

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How ODD

2018-06-25T23:07:18Z

It’s not that I don’t believe in ODD. There are established diagnostic criteria for Oppositional Defiant Disorder, published in the DSM-5, among other places. The list includes a series of traits including irritable mood, argumentative behavior and refusal to follow directions, that occur more than typically in other people of similar age and circumstances, that cause problems in every day functioning. A flip description is that kids without ODD will argue about things they don’t want to do, but kids with ODD tend to argue about things where one would otherwise expect indifference. I’ve read the criteria in the book. It’s pronounced Oh Dee Dee, not Odd, by the way.

And there are definitely people who fit the criteria. In my years teaching children with learning and behavioral disabilities, and in my work now as a developmental pediatrician, I have encountered many of them. So I can’t say I don’t “believe” in ODD.

However, I don’t believe the label of ODD has very much use. It doesn’t seem
to help children understand themselves, it doesn’t seem to help their parents or teachers or therapists understand them better, and it doesn’t give me much insight in caring for them. I don’t give the diagnosis myself unless I can’t
access needed treatment based on other existing diagnoses.

Because children with ODD labels just about always have other existing diagnoses, and these often do help direct care and improve understanding.
In fact, virtually every time I scratch the surface of a child who arrives with an ODD label, I find one or a combination of other challenges. The big three are ADHD, anxiety and autism.

So I’m swapping one label for another, you might say. What use is that?

The use is that these other labels are often much more useful.

ADHD, for example. Sure, it’s also based on a checklist of symptoms, and you do have to be careful because other things can sometimes lead to many of these symptoms. Anxiety, for instance. Or sleep apnea. But someone with a well established diagnosis of ADHD probably has biological differences in parts of cortical function, particular in the prefrontal lobe, and other areas that control executive function. We know that from functional MRI studies. And there are probably differences in the way dopamine, norepinephrine and some other neurotransmitters are handled in the brain. We know that from studies of effective medications that impact dopamine and norepinehrine.

And poor impulse control can lead to very oppositional and defiant behaviors. A person who says the first thing that comes to mind is a person who can’t easily stop and think through a more diplomatic response. A person who tends to hyperfocus in some areas is one who may not be able to shift focus to a new request or direction.

Anxiety can be diagnosed from a combination of externally observed and internally reported traits, depending on the age and communication abilities of the person in question. In school, I learned that anxiety was an “internalizing” disorder, one with symptoms felt inside, not acted upon visibly. In reality, anxious people, especially children, can have a lot of externalizing symptoms. Aggression, in young children, is often driven by anxiety. That’s the “fight” part of the “fight or flight” response. Arguing is the verbal version. The brain is frozen and produces a reflexive, protective response, that of “no.”

And we know there are biological differences in the brains of those with anxiety and those without, subtle differences in the function of the amygdala and the hippocampus. Likely differences in the way serotonin and some other neurotransmitters are handled. Again, we know this based on brain imaging studies and the mechanism of action of effective medications.

And what of autistic people? There’s a lot of ADHD in autism and a lot of anxiety in autism. And in particular, many things set of anxiety in an autistic brain that society, parents, teachers or therapists don’t often recognize as anxiety triggers. Society recognizes fear of spiders and fear of flying and separation anxiety. It doesn’t recognize fear of the slightest change in the daily schedule, the fear of the wrong brand of pretzels, the fear of getting lost on the way to the school bathroom. And there’s the secondary anxiety as well, the anxiety that occurs when one anticipates sensory overload or a confusing social situation.

Some studies find people with ODD have decreased activity in the amygdala as well as differences in parts of the brain that control executive functions.

I had a conversation with the parent of a patient who was diagnosed with autism, ADHD and ODD some time before I met him. And we were discussing what I have dubbed the “three o’clock” meltdown. This occurs when the child maintains expected behavior, more or less, throughout the school day, and then falls apart upon getting into the car or off the school bus. It’s almost diagnostic of anxiety. Every little thing leads to tears or screaming or bigger problems. Asking, “how was school?” Being told to start homework. A sibling’s very existence in the backseat of the car.

So I talked about how questions and demands were likely setting off “anxiety explosions” in the brain, leading towards overload. And that the child’s argumentative and behavior was the only response available to him in the situation. This biological explanation was a new way of thinking for his mother who said to me, “I always assumed the arguing was from his ODD.”
Well it was. He’s labeled oppositional and defiant because he behaves in oppositional and defiant ways under stress. It’s a diagnostic tautology. But it doesn’t tell us anything.

In England, where Asperger’s is still routinely given as a diagnosis, there is also a “subtype” of autism described as Pathological Demand Avoidance, or PDA. Children with PDA often fit some traits typically associated with autism, but tend to have comparatively less difficulty with language and social interactions. They typically have significant difficulty with “demands.” This includes things that adults don’t typically see as demands, the constant barrage of expectations of daily life, from getting dressed to completing school work. Each demand sets off a cascade of anxiety, which in turn leads to negotiating, or arguing, or screaming.

During my training, one of my attendings put an article about PDA on my desk with a Post-It, “what do you think about this?” I responded through the same medium, “sounds like a cross between autism and ODD.” If asked today, I would probably say the causality goes the other way, that PDA traits of autism lead to the oppositional and defiant behavior. I’ve had a few hundred kids more to think about since then.

In the five years since that brief exchange by Post-It, I have never encountered another professional in the United States who has heard of PDA. Which is, I think, a mistake, one I’d like to rectify.

So I talk about PDA about a lot. I send resources to speech therapists who are struggling with the behavior of my patients. I print links for parents. Occasionally, I meet a parent who previously stumbled on PDA themselves. There are some websites in England with tips for teachers and information for parents about effective strategies.

PDA experts suggest reducing unnecessary demands, making requests indirectly and taking a collaborative approach. They also emphasize recognizing the underlying anxiety and out-of-control feeling that underlies the challenging behavior. And they specifically recommend against strict “behavior” programs.

In other words, what seems to help kids with PDA is recognizing that anxiety is driving the difficulty regulating behavior, rather than addressing behavior regardless of the underlying causes, as tends to be recommended for oppositional, defiant and autistic children.

Well, gee.

He doesn’t mention PDA in any of his books that I’ve read, but child psychologist Ross Greene advocates a remarkably similar approach to helping children with oppositional and defiant behavior. My favorite book is, “The Explosive Child.” He says he might just as easily have called it, “The Inflexible Child” because the explosions tend to result from difficulty with flexible thinking. Adding more rules and more consequences is not generally effective, because the problem is not one of not “knowing better,” but of not having the skills to “do better,” and more consequences, positive or negative, doesn’t do much to change behavior in the moment. He mostly doesn’t address specific diagnoses at all, because the specific challenges tend to be more relevant than the diagnostic category. If a kid can’t transition from one activity to another, it doesn’t matter as much if we call that “autism” or “anxiety” or “ADHD.” What matters is finding a way to support transitions.

This correlates very much with my own observations in the field. Except when it comes to the prescribing of medications, or some other very specific therapeutic strategies, I have found “what we call it” is less helpful than describing the problem clearly and then finding a respectful way of doing something about it.

And the current things we tend to do about oppositional and defiant behavior aren’t working.

“My kid flipped over a desk at school,” a parent tells me. They offer to show me photos of the classroom. But I’m much less interested in the specifics of the destroyed room than I am as to what happened beforehand. Well it was math class. So they were just sitting around, doing math and then he started flipped over tables? Well no, he said the math was too hard and he wasn’t doing it, so the teacher told him that it wasn’t hard and to do the math or move his clip down on the behavior chart and he started yelling so the teacher moved his clip down and said “no recess” and he ripped his math so they called the assistant principal who grabbed his arm. That’s when he flipped the desk over.

Things that didn’t work in this common scenario: discounting feelings, public threats, ultimatums, removal of privileges and adults getting into the child’s personal space.

What if the teacher let the kid not do the math for a few minutes while helping other students, and then approached him privately. Would the student get over the anxiety and get to work? What if the student and teacher had pre-arranged a secret signal to use when the work seems too hard? What if the teacher sat down with the student and did the first problem together? What if the teacher put fewer problems on the page or showed the student how to cover half the page so the work looked less intimidating? What if the student had a choice of math or reading now? What if the student had a timer and could take a break for 5 minutes when stressed by math? What if the classroom did not have a public behavior chart? What if recess, the only chance a hyperactive student may get to move around, was not removed as a consequence? What if the student had ways to move within the classroom?

Why do people care more about what the classroom looked like than asking and answering questions like these? Oh, and did anyone stop to ask the kid what he was feeling?

So sure, I believe there are people who resort to oppositional and defiant behavior as their predominant response to stress. But I don’t believe the label, ODD, is getting us anywhere towards helping people find other ways of responding to this stress, and it focuses all too much on the response, and not enough on the radical notion the person is experiencing stress at all. Rather than whittling away at the behavioral tip, I advocate we look much deeper at the iceberg below and look for ways to validate feelings and perceptions, modify the environment, and teach more productive responses. This strategy is better supported by biology, more likely to work and most respectful to the person involved. And yet, it’s rarely considered. How odd.

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World Autism Day

2018-04-04T01:19:46Z

What do you say about autism to a ten year old newly diagnosed with autism who already knows about autism?

Fifteen years ago, he wouldn’t know anything about autism. His parents maybe saw Rainman, which was bad enough. Now there’s so much more to unlearn.

She reads at a tenth grade level. She’s seen the autism class at school. The kids don’t talk. And they’re loud, really loud.

He’s been a buddy to the kid in the autism room. He’s given High Fives and let the kid win races. Then he goes back to his real class and sorts Pokémon with his one friend who also likes Pokémon. He doesn’t belong in That Room.

They had an assembly on autism and now the kids are calling him “autistic” as an insult. “I’m NOT” he says. He just missed two days of school to answer a bunch of questions for a lady, though, and she had a lot of books in her office about autism.

When very young children, and those with significant language challenges are diagnosed with autism, their parents don’t think they would understand the explanation. Which is a problem, but a different problem.

When adults are diagnosed with autism, it’s usually that adult’s idea to get assessed in the first place. It’s usually that adult’s research on the different facets of autism that is used to access an assessment. The adult knows that autism can include people “like me” because they’ve done a bunch of reading of things written by autistic adults in their attempt to advocate for referral to a specialist.

Kids don’t have that luxury. All they know about autism is what we’ve told them.

And what have we told them? To be aware of the autistic children. To be kind, generally, to the autistic children. To feel sorry, perhaps, for the autistic children.

The autistic children don’t talk. They flap and spin and rock. They need extra special care because they don’t really understand things. They may be loud or tantrum or get into your personal space. They sometimes visit your class, with an adult helper. Or you can go be a buddy, which is not the same as being a friend

Maybe, they have heard of Temple Grandin. Or seen a few episodes of the Big Bang Theory. That doesn’t really help either, a model of autism as adult geniuses.

But she’s asking why she took all those tests and has to go see a counselor. He wants to know why none of the kids like him. She’s starting a social skills group for kids with autism, so somebody might say something. He’s asked, flat out, “am I autistic?”

So someone has to explain what autism is. Often the someone is a parent who is going through a grief reaction. A parent who was hoping the assessor was going to say “she’s just quirky.” A parent who thinks of autism as being the kids in “that class,” who has a lot invested in her gifted child not being seen like one of those children, or seeing himself like one of those children.

Those of us who are tasked with answering the questions of children, asked and unasked, what do we say?

We tie autism into what the child already knows. Trouble telling when people are joking or knowing when it’s your turn to talk in conversation. Sensory things. Not liking change. Having a really good memory. Being really really expert in dinosaurs.

We don’t present autism as a superpower, but we don’t present it as a supervillain either. We talk about some of the strengths and some of the challenges. We give those a name, autism. We explicitly say there are other people with similar strengths and similar challenges. We talk about how there are ranges, from people who have so much difficulty with communication that they don’t talk, to people who talk a little, to people who talk a lot but have trouble figuring out how to talk to other people at lunch.

And the hard part, we do this without demeaning the children who fit the stereotypes more closely, the children in the class down the hall, who are the ones our child today associates with the word autism.

And we do it without function language, and we do it without pity and we help our child see the ways she might be similar to them, and try to undo the past eight years of implicit and explicit separation from everything he has previously learned about autistic people.

If you’re me, you offer books to the child and parent. You talk about autistic adults matter-of-factly, including autistic adults who were probably similar to the child when younger. You explain why you aren’t using the word Aspegers or the phrase “high functioning” and that the report stating “level 1 autism” is meant to be a snapshot description describing current support needs, not a prediction of the future.

You are likely doing all of this while the child is in the room. So you may be doing some of this in telegraphese, because the parent hasn’t yet told the child and doesn’t want you to do it yet. You maybe slipped a copy of “you should tell your kid that they’re autistic” into their visit summary at the last visit. Think about all the social navigation this takes when you, yourself, are autistic, although the parent doesn’t know that.

We had lectures in medical school on breaking bad news. No one gives lectures on breaking news that is thought of as bad, but isn’t, or doesn’t have to be. In my developmental pediatrics training, I saw many senior clinicians explain an autism diagnosis to a parent.

No one tells you how to explain an autism diagnosis to a child.

And now, thanks to awareness, you are explaining autism to a child who already knows all sorts of things about autism. Except the most important thing.

I met an autistic teenager once who cheered every time the news announced the rate of autism had gone up. “More people like me!” he would say. Now I wish I’d asked what his parents, teachers, doctors, therapists might have said and done to help him feel that way.

That’s what I’m thinking about this World Autism Day, how to help autistic children see they, too, have a place in autismland. Despite everything that the autism awareness folks have tried to aware them out of it.

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Etched in my memory

2018-02-16T23:30:43Z

Every day, I attempt the New York Times crossword puzzle online. I say “attempt” rather than “do” or “solve” because I am not often able to complete the puzzle. For those unfamiliar, the puzzles increase in difficulty throughout the week from Monday to Saturday. Sunday’s puzzle is bigger and often involves complex wordplay but is not objectively more difficult than Saturday. It’s probably about a Wednesday.

I can virtually always complete a Monday puzzle. Rarely, there is a letter or two I can’t get, such as a sports star crossed with a rock band. I can usually complete Tuesday and often Wednesday. I may have managed a Thursday once or twice, but overall, the end of the week remains beyond me. Friday and Saturday, I put in a few words and shrug. I don’t even know if the words are correct because they don’t typically intersect with each other. I rely on the Saturday Times to keep me humble.

Once every two or three weeks, I enter the word “etch” into a puzzle. It’s a good crossword puzzle word, what with an E and a T in a neat package of four letters, and can be clued in several different ways. So I put it in.

And there I am. Transported back twenty-two years.

Some scientists report that scents are the most strongly attached to memories. I, and many others, create strong memory associations with certain songs. But I haven’t seen a lot written about the associations made in the mind with specific words.

It was my sophomore year of college. I was failing Organic chemistry, a class I needed to continue as a biology major. A class I needed to go on with my goal of becoming a doctor. A class I had been looking forward to taking. Everyone told me how much memorization there was in Orgo, as a warning. I had always been good at memorizing.

But I couldn’t find anything to memorize. The subject was full of detailed drawings of chemicals, with electrons that moved around willy-nilly. I couldn’t necessarily see the difference between one drawing and the next. I had (have) an undiagnosed learning disability in visual processing. And I couldn’t take notes very well, due to an undiagnosed disability affecting handwriting. I typed my notes for most of my classes, but there were too many drawings to type. A year later, I retook the course and found a way to take notes, copying only the drawings into my notebook with a gifted stencil, and then typing up descriptions for each step of the chemical reaction. Later, I could memorize the verbal descriptions of the drawings.

And the biggest problem was the lab. I had previously excelled in lab settings but this one seemed specially designed to torture me. First of all, I reacted poorly to many of the chemicals. In fact, I joke that I remember my first year of college better than my second due to spending so much of my sophomore year in the lab environment. Acetone was used, literally, as liberally as water. The day we used ether, I sat on my stool and said in a singsong voice, “I think I’m becoming anesthetized” until they sent me outside for a walk. One day I showed up for dinner still wearing my gloves, my apron, my goggles. I had removed my glasses and walked across campus without them. When asked about dinner I said, over and over, “All I want are dry socks and a cup of cocoa.” After that, a few friends met me at the door of the lab and escorted me to a dining hall, where they placed food in front of me. Also, that was the year I started carrying dry socks around in my bag.

Then there were bottles of chemicals I couldn’t lift. We were supposed to pour out our own amounts from a centralized supply, and I couldn’t lift the full containers well enough to pour them. See: undiagnosed disability affecting hand strength. And most weeks we built distillation apparati where we connected glass parts with tubes and the tightened wires around the tubes to prevent leaks. I couldn’t use the pliers well enough to tighten the wires. See: undiagnosed. . . .you get the idea. After a few breakdowns, the professor had smaller amounts of chemicals supplied for me and asked the TA to tighten my wires. So I would be muddling through as best I could, and my TA would come over and say “Hurry up because I have to tighten your wires!”

Because rushing a person who is struggling with manual tasks is really a stellar strategy. She and I had a great relationship. All the rushing and pressure in lab, plus the chemical fumes, and the long, hungry hours in a cold room, usually with wet socks, led me to be slower and clumsier. Also, they charged you for broken glassware. I broke something most weeks. Two years later I took 20 hours a week of credit for my biology thesis, in a program that did not charge for broken glassware. Over the entire year, I broke one flask trying to fit it into a clamp and had dropped nothing.

So I prepared for lab the only way I knew how, what I would later refer to as the Hermione Granger approach to problem-solving. When in doubt, read more.

This was all pre-internet. In 1996, we had e-mail, and we had a new web browser that loaded pages in something under a minute, which was a marked improvement over the prior web browser. When my biology professor asked us to mate virtual fruit flies, he had to give us instructions on how to enter a URL and click on a web link. Google hadn’t been invented. We didn’t have internet in our dorm rooms.

So today, I would google for further information of things I didn’t understand, and would likely find two or three online lab manuals, a few YouTube demonstration videos and maybe even a discussion forum or two.

What I had was, the lab manual and the textbook.

But at least, I could prepare for lab by reading the directions over and over and over. I was a pretty good cook, and one of my strategies was to read the same recipes over and over, as well as reading different recipes for the same dish.

And there it was in step one of the directions. “Etch the glass”

I didn’t know how to etch glass.

No further description or explanation of the process. No other explanation or description elsewhere in the lab manual. Nothing in the textbook.

Before lab, we had a brief preparatory lecture. Nothing was mentioned about etching glass.

So I asked the TA, “How do you etch glass?”

She roared at me, “Is that RELEVANT to what we’re doing today?”

“Well,” I stuttered, “it’s in the first step of the directions.”

“We’re not doing that step,” she dismissed me.

So I never learned how to etch glass. It never came up again. It didn’t come up that time. It turned out to be a step we could skip without any impact on the subsequent steps. I suspect the directions were a relic from a previous version of the lab manual. The professor didn’t review it prior to the lab to tell us about the change in the plan. The TA hadn’t read it either.

What I keep thinking about, twenty-two years later, is not about the professor, or even the TA, although I’m still angry with her, very angry. It’s the other students, the 30 or so other students in my lab section, who came into the lab and bustled around starting with step two. None of them tried to do step one. None of them. I looked around in confusion then, and I’m thinking about it still in confusion now. How did they know?

It’s my autistic memory that brings me so vividly back to that lab, that conversation, that feeling. And it’s the most autistic feeling, to look around at a room of people in the same situation you are, who clearly know something you don’t, even though you theoretically had access to all the same information.

How did they know?

And that’s what replays in my head, every time I put the word “etch” into another crossword puzzle. The panicked reading of the lab manual, the voice of my TA, and my scan around the room trying to figure out how everyone else knew.

Etched in my memory.

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Visible

2018-02-06T03:27:48Z

I walked into a door today.

Specifically, I walked into the narrow side of my office door, while at work. No one else was around. It connected with my forehead. I said “Ow.” Then I checked that I wasn’t bleeding (I wasn’t) and that I didn’t seem to have a fracture (I didn’t.) Then I continued my trip out to the waiting room to get my next patient.

An hour or so later, I had a bruised, swollen area on my forehead so people started noticing. Co-workers asked what happened. They tried to talk me into putting ice on it. (I declined since I was already cold.) They made the expected jokes about how “walking into a door” is often a cover story used by women who were being abused. Someone suggested I complete an incident report. (I didn’t.)

It hurts if I push on it, but otherwise, honestly, it’s no big deal. It’s not affecting my ability to do anything. It’s just visible.

You know what does hurt?

My hip hurts from sitting in my chair for 20 minutes. I stand up and stretch and sometimes I limp but often people don’t know or notice. I plan a lot of things around what my hip will or won’t do and in what time frame, trying to get my body to do as much as possible when working with the kids. I chase 2 year olds for a living.

I’ve had recurring canker sores off and on for awhile. I have one now. It bothers me when I eat or drink. It bothers me off and on during the day. I talk for a living.

I’ve been typing a lot trying to catch up on paperwork, which has been exacerbating my tendonitis. It’s been slowing down my ability to keep up on paperwork and I’ve been taking more Aleve than I probably should. I write for a living too.

Next week, I’ll still have chronic hip pain, and recurrent canker sores, and recurrent tendonitis. And I’ll be factoring them in to all the little decisions I make throughout the day, day after day after day.

Next week, probably, I won’t have a “goose egg” on my forehead.

But right now I do, and it’s visible. Not really painful, not affecting my activity in any way.

Just visible.

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The Only One

2017-12-30T17:09:14Z

When I was seventeen, I taught a summer class in Magic. I had a student, nine or ten years old, with ADHD, and I found his behavior challenging. He finished his assigned projects quickly and then moved on to everything and anything else in the room. He interrupted me and the other students. One day he pushed up the bottom of a disposable pepper shaker that we had been using for a trick and all the pepper came out. A day or so later, after I stopped coughing, I thought about the frequency at which I had to tell him “no” and “stop” and “don’t” during our 90 minute class. Then I multiplied this times the other three classes he was taking at the summer program. And full days of school during the year. And at home with his parents. I started to wonder what damage was being caused by the cumulative effect of all this negativity and criticism. I was seventeen, with no formal teacher training and there was no internet to consult, just my instincts and my creativity and a few books I had borrowed from the public library about pedagogy. So I brought in some additional magic tricks that weren’t on the set curriculum and put the directions on index cards. When this student was starting to veer off, I didn’t say “no.” Instead I pulled a trick out of my pocket and said, “try this!” I don’t know if that had any lasting effect, but the short term benefit was immediate.

A few years later I began teaching in a residential school for students with ADHD and related learning and behavioral disabilities. We spent a lot of time addressing and redirecting behavior. We had to, just to get through the day of meals, chores, class and activities. Sometimes, after the students were in bed, I would think about a child who might have had a particularly difficult day, and I would review my own interactions with that child. Did I say anything today except “no” and “don’t” and “do this” today? And if not, why should the child “do this” or anything else I said? Because I had no relationship. That was my cue to find moments to smile, and praise, and ask about favorite activities and play a few minutes of Scrabble. The purposeful building up of relationships led to much more productive interactions when I did invariably have to give directions, corrections or criticism.

There’s some reasonably famous research in my field that recorded the words children heard as toddlers. The more words heard by a 2 year old, the larger their vocabulary was on testing several years later. They found correlations with socioeconomic status, but also noted clear gains with more words heard between children in each category. They call it the 30 million word gap. Similar studies then looked at the specific words. It turns out that most children hear about the same number of directive words used to get through the day. This includes things like “stop that,” and also “eat your dinner” The difference was in the extra words heard by some of the children beyond directions and criticism. This included words of praise and encouragement, and also just conversation. Not just “get your coat, we’re going to the store” but “we’re going to the store to buy apples.” And then at the store, questions and conversations about red apples and green apples and shape and the fun of making applesauce together.

What we say to children, matters.

At a professional conference this fall, I found myself in a workshop discussion with some of the people who founded my field of Developmental Pediatrics. And I made the comment that often, I was the only adult in a disabled child’s life who gave any positive messages about disability.

Unsurprisingly, this was taken to assume I meant that I painted an unrealistic and overly rosy picture of disability, all flowers and unicorns, and ignored the hard stuff.

But I don’t do that.

I do try to provide a simple, but surprisingly nuanced message, that life with a disability can be OK, and that disability does not need to be removed for a person to live a happy life.

My patients go to speech therapy where they are told to use their words, and behavioral therapy where they are told to make eye contact and play in specific ways. They receive counseling that others will not like to hear them talk about their special interests. They are told their classmates will think them a baby if they bring a comfort object to school or suck their thumb. They are encouraged to walk, when wheeling might save energy to enjoy the trip, because after all, they can walk. Typing instruction is postponed because “he needs to be able to write” and recorded materials are not provided while yet another reading test is failed. They are told to fix how they sit and how they walk and to have quiet hands. The messages start in the morning with their parents, proceed through the day at school and then finish up in therapy sessions.

It’s not that my patients don’t hear any praise or encouragement. They do. But they hear it unrelated to their disability or despite their disability. They hear that walking and eye contact and talking are ways they can earn a place for themselves in the world, and that mobility devices and looking away and using AAC are second best, if that.

And so I pose the question, how can a disabled child ever hope to develop a positive self-concept as a disabled person, when nearly every message they hear about disability from the (non-disabled) adults in their life is a negative one?

We don’t have a lot of concrete evidence about what this does to children, probably because few have thought to even ask the question. I find compelling an admittedly flawed polling parents of children with cerebral palsy about the children’s quality of life. Parents rated their quality of life lower overall than parents of non-disabled children, but within the group, the quality of life of children who walk was rated lower than that of children who could not walk. In a rare show of insight, the authors hypothesized that the children in their study who walked were generally enrolled in regular education program, constantly compared and comparing themselves to non-disabled children and constantly coming up short. The children in the study who did not walk were largely in segregated programs and were not subjected to these constant comparisons. While the issues with separate, segregated educational settings are not to be minimized, this suggests that presence of a disabled peer group may be beneficial.

Other studies point out the high rates of depression among autistic adults. Some blame the depression on autistic brain chemistry while others are starting to note the impact of a lifetime of perceived failure and discrimination. A recent study suggested that adults with a variety of disabilities have higher self-esteem when they identify as disabled and with the disability community. As someone who has experienced the benefit of disability community myself, color me unsurprised.

To reach children with disabilities, one must reach their parents and teachers and therapists and doctors. And so I have taken on this radical message that shouldn’t be radical, and I am trying to spread it to parents and other professionals in the hopes of exposing more children.

We need to stop the false dichotomy between “OK” and “disabled”

We need children to be able to choose to walk when it is helpful, and crawl when it is helpful and use a wheelchair when it is helpful. We need children to be able to type, or use AAC, or Braille because it’s easier, and easier isn’t cheating. We need children to understand that words may go away at times of stress, and that the inability to “use your words” is not the sign of obstinacy but the sign of a brain that handles words differently. We need to legitimize the idea of doing things the “disabled way.”

Also, we need to do a better job of providing disabled adults as role models for disabled children and as consultants for non-disabled parents and professionals.

And so I find myself advocating passionately at my professional meeting for more positive, or at least, neutral portrayals of disability. That doesn’t mean denying impairment, or the impact of disability on daily life, and it certainly does not mean denying ableism as a constant factor. As a disabled adult, I would be the first to agree that disability can make life hard, sometimes due to impairments themselves, and even more often due to a society built by and for the non-disabled.

I describe my job as helping children with developmental disabilities grow up to become the best adults with developmental disabilities they can be.

Whatever that looks like.

That’s not quite how our professional society would describe it. But we have to change, as professionals, for the sake of the children for whom we provide care.

Because I can’t be the only one.

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From one Good Doctor to Another, part 1/?

2017-12-30T14:15:16Z

I’ve been watching The Good Doctor on television. How could I not? It’s a medical drama with an explicitly autistic protagonist and I’m an autistic doctor with special interests in medicine and autism. The show should be a dream come true.

It’s a dream all right. But often of the nightmarish sort.

And yet I keep watching. I keep watching a lot of other medical dramas, too. I kept watching Chicago Hope even after the episode where they drop-kicked the heart, and I kept watching Grey’s Anatomy even after the pilot where the whole team was on call together for 48 hours which was illegal at the time, and also, it makes no sense for the whole team to take call together because the point of call is for some people to stay in the hospital while the rest can go home and sleep. And I kept watching House even after the doctors did their own DNA testing from scratch and their own patient transport and the doctors who were called Fellows never did anything resembling an actual Fellowship.

All the while yelling “Medicine doesn’t work Like That!”

So now I’m doubly scrutinizing The Good Doctor, which as an autistic doctor, I think I’m particularly positioned to do. There have been 9 episodes so far and I expect I may have more to say in the future so I’m calling this Part One of ?.

I’m going to start with a couple of caveats. One is that I know that the American show is based on a Korean show by the same name. I haven’t see the Korean show and don’t plan to, and I’m also not terribly interested in any defense of the show’s problems that basically says “well it’s from the source material.” I’m going by what I’m hearing on screen. The second is that I am having a fair bit of difficulty following the plot. This often happens to me with TV shows because I have a reasonable degree of prosopagnosia and can’t reliably tell characters apart. (Ask me later about my prosopagnosia scale) Right now I recognize the protagonist, Dr. Shaun Murphy, and his mentor, Dr. Glassman, largely by their voices. That’s about it. I am picking up some bits of the plot from Sara Luterman’s reviews on NOS Magazine.

The third caveat is that I am an Autistic doctor but I am not a surgeon. And unlike Shaun Murphy, I was not known to be Autistic during my residency training. So while I am scrutinizing the show from my experiences as an autistic, a doctor and an autistic doctor, there are also going to be some pretty obvious differences from my under-the-radar journey to become an autism specialist and his “very special” resident status in his surgery program.

My critique so far seems divided into two categories, roughly “Autism doesn’t work Like That!” and “Medicine doesn’t work Like That!”

I’ve actually found comparatively less in the first category. After all, there is no one specific way that autism works or happens or appears. The saying, “if you meet one autistic person, you’ve met one autistic person” is really true. And I don’t just mean thinks like the artificial high/low functioning divide. Consider there is another adult-diagnosed autistic female doctor who lives in my city and works in a field similar to mine. And we are still really pretty different from one another, both in ways related to autism and otherwise. And so there are really very few times when it is accurate to say “an autistic person wouldn’t have been able to do” whatever. Also, autistic people often can do things under some circumstances but not others, or for a short while but not indefinitely. And we often have inconsistent skills, being able to do hard things, but not always the things considered easier or prerequisite. How often are we told, “if you can do X than you can do Y,” even as we excel at Y and struggle with X?

So I’m not going to do that to Shaun. However, there are places where his perceptions or actions are inconsistent with what has been stated or shown earlier about him in relation to his autism. And there are times when he seems to be portrayed more as a cluster of diagnostic criteria than a person with a personality. That’s what I’m putting under the umbrella of “Autism doesn’t work Like That”

The bigger problem, though, are the ways where “Medicine doesn’t work Like That!” Under this umbrella I’m including medical diagnoses, tests and treatments. I’m also including aspects of how hospitals actually function, and how residency program actually function. Every medical show I’ve ever seen has holes in this area, some greater holes than others.

The Good Doctor has giant gaping holes in their portrayal of hospitals and residency training.

What’s unusual, and infuriating, is the way they then use these holes to blame Shaun and his autism for the problems they create.

Consider the second episode. Shaun is assigned to discharge patients from the hospital and is required to examine each one before sending them home. He does poorly with this task, at least partly due to social communication impairment. Therefore his autism is seen as the problem.

However, this is not how discharges work at any teaching hospital I have ever encountered. Typically, each resident is assigned a couple of patients who they evaluate first thing in the morning. Vital signs and labs are checked and each patient is given at least a cursory examination. The patients are then presented to an attending doctor (that is, one who has completed residency training) who determines who can be discharged. A first year resident might be the one tasked with giving the actual discharge instructions but would never be entrusted with making discharge decisions. And if he did go to discharge a patient and discovered complications, he would not be expected to solve the problem in vacuum. Rather, he would contact a more senior resident and/or the attending. Sure, the senior resident or attending may be grumpy about the interruption, but they would recognize this as an expected part of the teaching cycle.

In episode 7, Shaun encounters an autistic patient. (More, probably, on him later.) The patient needs an MRI and is too agitated to lie still. They try giving him a sedative but it has side effects so they decide to instead have Shaun talk to him during the MRI to calm him. This does not go well, for a number of reasons, and Shaun’s autism is blamed. But in the real world, patients who cannot undergo an MRI without sedation are not sedated orally by surgeons plinking around in the MRI suite. Instead, an anesthesiologist is consulted who can sedate the patient with proper monitoring and treatment of complications. Small hospitals may not have this ability, but Shaun’s hospital is portrayed as having cutting-edge technology and procedures. A hospital that can 3D print a bone would have a pediatric anesthesiology sedation program. They would also probably have a Child Life program which may have been able to help the patient undergo the procedure without sedation.

In both cases, a problem was created that probably would not exist in real life, Shaun struggles, and then his autism is blamed.

And it’s a shame, because one doesn’t need to create ridiculous situations to show how difficult medical training can be for an autistic person. I remember being sent on an ER rotation at a different hospital and staring blankly at my attending who told me to “NP the baby.” I had to stop myself just short of asking what he wanted me to do with the Nurse Practitioner. Finally I realized he wanted me to order a “NasoPharyngeal swab”, which I had called a “respiratory panel” at my home hospital. I was a senior resident with a good amount of medical knowledge, suddenly at a new hospital where everything was called something different.

Or calling consults. If they don’t call back right away, do you page them again? Do you page or call? How much information do you give up front? Can you give a coherent explanation on the phone or do you ramble into details they don’t want to hear?

Shaun is portrayed as having an exceptional visual memory so he probably doesn’t struggle with prosopagnosia. I would love to see a medical drama tackle the problem of being unable to reliably recognize patients or coworkers. We never see Shaun silently willing someone to turn over their ID badge so he can figure out if they are the cardiologist he met Monday or a lab tech he’s never seen before. Or worry he will be considered racist if he cannot tell two patients of a minority race apart.

Of course, none of these are the Stuff of Drama.

So they create crises in airports and minutes-count decisions whether to amputate someone’s leg in the operating room and hospital boards making decisions about residency training and patient care that would never be matters addressed by a hospital board of directors.

And there have been some really nice moments. There have been times when Shaun both expresses sexuality and confronts the difficulty he has navigating relationships. He, more than his neurotypical colleagues, manages to grasp the idea that life with an amputation is better than no life at all. Of course, his assertion that disability beats death is portrayed more as an example of his naiveté than of his nuanced understanding of systematic ableism.

And then there is the moment we’d all been waiting for, when Dr. Murphy, autistic, meets Liam, an autistic teenager who arrives at the hospital with a cluster of inexplicable symptoms. At first, Shaun shows the magical, mystical understanding of the patient’s needs, from shared autismness. I can relate to that. Then he avoids caring for the patient at all and doesn’t feel any sort of connection to him. That’s when we learn that Shaun has never before (knowingly) met another autistic person.

This raises all sorts of questions for me. When was he diagnosed? Who told him about autism in general and his autism in particular? Did he never participate in any therapies or program with other autistic people, even just in the waiting room? Did he go through college as a diagnosed autistic person in the early 21st century without encountering any other autistic students?

But of course, we don’t get answers to these questions. We get some “not like my child” moments between Liam’s parents and Shaun (followed by some “you are too like our child” moments), some really nice attempts at connection from Liam himself, and a somewhat nuanced assessment from Shuan that Liam’s parents were harming him by seeking dangerous treatments out of love. Liam was a great kid but was not given a lot of agency by the plot, so Shaun has now interacted with another autistic person, but not yet any autistic cultural ambassadors. It still isn’t clear whether autism means anything to Shaun besides his own set of struggles and deficits.

During my own surgical rotation, literally during a surgery, a surgeon asked if I was interested in going into surgery. Besides my own physical disabilities which would preclude such a career, I commented that I didn’t have the right temperament for surgery. The surgeon warned me not to stereotype. I answered that I was not talking about arrogance, but rather that surgeons are generally people who went into medicine because they liked to fix things, and I didn’t have that mindset.

The surgeon told me I would have to change my mind as I became a doctor and patients came to me wanting to be fixed.

“Well, let me know when there is a fix for autism” I replied.

There isn’t one, of course, and I don’t want there to be one, and I have a role as an autistic doctor helping families realize there doesn’t need to be one. I play this role even though I am not openly autistic. Shaun, meanwhile, is openly autistic and plays the surgical role of fixer to a T.

I wonder what he would have thought about that operating room conversation about me, about patients, about himself.

Shaun is portrayed as being a better doctor due to his autism, which gives him exceptional visual-spatial thinking as well as the apparent ability to commit medical texts to memory. I argue that I am a better doctor due to my autism providing me with increased insight as to the patient experience and the ableism my patients encounter on a daily basis. A good (not eidetic) verbal memory doesn’t hurt either.

Keep at it, Shaun. Get an autistic mentor. Get a better residency program. Get better writers. Because the world needs good autistic doctors, on the screen and in real life.

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About behavior, for people who should know better

2017-10-12T19:06:24Z

“If she doesn’t get enough sleep, we get behaviors,” says a mother.

[I sure hope so] I think. But outwardly I nod, because we need to stay on track to address the sleep problems.

An hour later, I am reading a report from a speech therapist.

“No behaviors today,” she writes, perkily.

[Wow, I hope that’s not true.] I think. [Was he comatose?]

So, “behavior” is literally in my job title. As a result, I spent a lot of time talking to people, largely adults, about the behavior of people, largely children.

And so I hear and read a lot of things where people use the word “behavior” as a shortcut for. . . “disruptive behavior” or “inappropriate behavior” or maybe just “behavior I don’t like.”

There’s a lot of baggage of course in what behavior is considered disruptive or inappropriate or challenging. And I’ll get to that.

But first I want to unpack the very idea of “behavior” itself. What is behavior?

Behavior, friends, is something an awake and conscious person does using voluntary muscles.

This is not what Merriam-Webster would tell you, or perhaps your nearest psychologist, but it’s the best I’ve got.

Awake and conscious, to remind us that things like sleepwalking aren’t actually behaviors. I was in some internet conversations recently about monitoring behavior, and how not every behavior should be monitored, and I made what I thought was a pretty good argument that also some things that are not behavior should be monitored. Like sleepwalking.

Also, voluntary muscles. This does not mean that all “behaviors” are done purposefully and consciously. They aren’t. But OK

If I tap your knee (actually your patellar ligament) with a reflex hammer and you kick me, that’s not a behavior. That’s a spinal reflex.

If I grab your toy and you immediately kick me, that’s a behavior, although it may have been so fast that it was basically an instinctive reaction.

If I grab your toy, and ten minutes later you walk over and kick me, that’s also a behavior, and a different one from above.

Breathing is generally under brainstem control and is not a behavior. But holding your breath is, whether it’s a breath holding spell in frustration, or a response to my directions to “take a deep breath.”

Context is everything.

You know what else is a behavior?

Sitting in a chair at school and raising your hand

Following your speech therapist’s directions

Answering when asked what you want for a snack

So we really need to stop using “behavior” as a shorthand for “behaviors causing problems.”

As a child, I always loved dandelions. As an adult, preparing to teach a class on plants, I was mesmerized reading that a rose would be a weed in a cornfield.

Sitting still and quietly is an expected behavior in math class when the teacher is talking

Sitting still and quietly would be an extremely disruptive behavior in marching band.

So an important step is modifying “behavior” with some context. Adjectives help. Aggressive behavior? Disruptive behavior? Challenging behavior?

That at least gives another person some idea of what is going on. “No behaviors today” doesn’t tell me how speech therapy is going. “Behavior was appropriate” tells me something useful. “Jacob sat for 20 minutes and followed directions” would be better still.

This still leaves the larger problem as to how terms such as “appropriate” or “disruptive” are even defined. Sometimes there are clearly stated rules and expectations. Some of these are for legitimate reasons (no food in science lab) and some for more arbitrary reasons (no water bottles in class at all. Many classroom rules are designed to maintain a setting where most students can learn.

One popular social interaction training program carefully uses the terms “expected” and “unexpected” behavior, instead of “good” or “bad.” In the materials I have reviewed from this curriculum, there is very clear negative judgment placed on “unexpected” behavior. Another term I’ve heard a lot is “choice,” as in “make good choices” or “he has been making bad choices in school.”

Behavioral expectations, whether called good and bad, appropriate and inappropriate, or tomorrow’s next set of antonyms, are generally set by the adults for the children, and by the neurotypical majority for its own convenience. This is sometimes done more explicitly than other times.

If the child is playing noisily in my exam room and it bothers his mother but not me, is that a behavior problem?

Can I correct a father who is requiring a child to “use your words” before having a snack he requested by pointing?

And where do I even start with a child who seems to be doing no academics in school, but who gets a list sent home daily of “behaviors.” His family was hoping for more reading instruction.

“What kind of behavior challenges are they having in school?” I ask.

“Oh, if he cries when they ask him to do something, or if he flaps his hands.”

I monitored my own behavior very carefully. I did not raise my voice. I did not cry. I did not even flap my hands in front of my face. And I refrained from visiting the classroom and dismantling it bit by bit. Instead, I printed out copies of “There’s a flap for that” and “Quiet hands” and typed out recommendations for increased attention to reading.

Preparing written reports is a behavior, too.

(I began writing this before I read this and the one is not in direct response to the other. But you should probably read that one too, if you haven’t yet.)

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Thoughts for Autistic Pride Day, 2017

2017-06-19T00:28:50Z

I’m standing on a bridge. It’s a good bridge, with a walking path, which shows they thought about people like me when they built it. There are people walking and biking all around me. Over on the road I can see cars and buses and loud motorcycles going way too fast. A barge passes slowly under the bridge next to me and small pleasure boats and a tourist boat go by. Ahead is the varied ribbon of a freight train passing in front of me, too far away to count the cars. I don’t know why I count train cars, anyway, since I never remember the number to compare it to any other trains I may see, but my family taught me to count train cars as a preschooler when we were stopped at railway crossings and it stuck. A light rail train goes over the next bridge over. I hear rotors and look up to see a helicopter. Automatically I search the sky in the direction of the airport, but I don’t see any airplanes. Later, I relate this story of transit near-completeness to another autistic friend who said, “no airplanes?”

Transit geekery is stereotypically autistic, although I know non-autistic transit geeks and plenty of autistics who could care less about transit. Mine is a pretty mild case, compared to folks who know the engine numbers of the local trains that come through at various times of day. I know very little about transit outside of what I need to get myself from point A to point B. And I’ve been counting train cars for nearly 40 years.

Straight ahead lies my immediate destination, an inclined or funicular railway. At one point, there were 23 funicular railways along this cliff. Now there are only two left, one of which is solely a tourist location and the one I am approaching, which has been incorporated into the local transit authority. I ride it on my transit pass, although it’s not really a pass in the way I think of as a transit pass, where one can purchase unlimited rides for a set period of time. It’s more of a transit debit card. At any rate, my ride up the Incline, as it is called locally, counts as a bus ride. I am amused that we call it the Incline. The Incline is the slope up the mountain, noun. The railway is Inclined, verb form. And more specifically, it is a funicular, where the weight of the car going down does most of the work to propel the other car to go up. The Italian song, Funiculi, Funicula, which many of us sang in our childhoods, is about a funicular railway.

Now I sound as though I’ve swallowed an encyclopedia, a taunt frequently lobbed at me throughout my childhood. I was actually in high school before I sat down to read an entire encyclopedia, and I skipped the sections on geography that did not interest me. The diagnostic manual says that autistic people have reduced ability to share our enjoyment and interests. The autistic community describes a spontaneous sharing of interest, regardless of the interest of the audience, as infodumping.

Some “experts” have claimed that autistic people have unusual interests, while those with Asperger’s are the ones who collect information about their interests. This seems as false a distinction to me as the one between autism and Asperger’s itself. I like trains but don’t have very much information about them, or desire to obtain more. I have gathered a few facts about funicular railways, mostly from Wikipedia, but I wouldn’t begin to call them a special interest. I do collect information on other interests of mine, from disability to show tunes to favorite TV shows.

I am watching old ER episodes now, after not having seen them for many years. At one point, I had seen all the episodes multiple times. I have videos of most of them. (I have no working VCR.) The first web pages I sought on the internet, when internet was first a thing, were ER episode summary pages and ER discussion sites. ER, at one point, was a very highly rated, popular show. It was still on the air when I was in medical school, and every now and again I would try to join a conversation about ER. The only thing is, even with this shared, very popular interest, I was apparently doing it wrong. I was interested in the medicine, the portrayal of a specific disease, and the practice of medicine, such as the way residency or hospital hierarchy was portrayed. I was interested in – well, more like infuriated by – errors in continuity. I was interested in the way disability was portrayed on the show, particularly the character of Kerry Weaver but also other characters and arcs throughout the series. The conversations I tried to join were almost invariably about who was romantically interested in whom.

Apparently, I was doing ER wrong. I did Harry Potter wrong, also, fascinated by the language choices and world building and characters, not the romance. I’m probably doing something wrong by making sure I used the word “whom” correctly in the above paragraph.

In autism, one of the diagnostic criteria is the presence of an interest that is considered atypical for age either in topic or intensity. Garbage trucks are considered an unusual interest for anyone at any age. Horses are a common interest for 10 year old girls, but an interest in horses to the exclusion of all other topics, is considered unusual, or abnormal by those doing the considering. Those doing the considering are generally non-autistic professionals.

Sometimes the one doing the considering is me. I know the master’s tools will never dismantle the master’s house (http://neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-ourselves-from-the-pathology-paradigm/, but right now I can only push the limits of the master’s framework so far. Sometimes I have to decide whether an interest in Mickey Mouse or My Little Pony or physics “counts.” The fact that I’m using my special interest in autism, also called my professional degree, to help make these determinations, is both funny and frustrating.

We’re allowed to like things. And we’re allowed to like things in the way that we, well, like to like them.

We’re allowed to like cars and flags and Mickey Mouse and bottle caps and pigeons and specific brands of soda and show tunes. We’re allowed to like trains, whether Thomas in particular or trains in general, whether we memorize the engine numbers or count the cars or plan rail trips across the country or apply for work at the local transit authority or just vaguely “like trains” in a way that standing on a bridge seeing a train makes us feel all happy inside.

This isn’t pathology. We don’t need to have our time with our special interests restricted, beyond reasonable restrictions such as having to meet requirements of work or participating in class or sitting down for meals. We don’t need to have our favorite toys put away to make us play with other things. We definitely don’t need to have our interests held hostage as the positive reinforcers of behavior therapy.

All around me I see people wearing the color of their favorite sports team and talking about games. They seem happy. I have no idea if they feel the same happy watching sports and talking about sports that I do when I am watching an ER rerun for the 50th time and repeating the dialogue, or looking up the books that served the bases of musicals or counting cars on trains. I hope so. I can’t ask because there’s no way to put that feeling into words. The closest I’ve seen is https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/" (The obsessive joy of autism.)

The internet tells me this is the 12 annual Autistic Pride day. Laura Hershey wrote the amazing poem about disability pride, http://www.thenthdegree.com/proudpoem.asp" You Get Proud By Practicing So I suppose every time we continue to count, play with, talk about, learn about, collect and otherwise delve into our pleasure, we are practicing our pride.

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Not Finished, Blogging Against Disabilism Day 2017

2017-05-01T07:30:37Z

My prior Blogging Against Disablism Day posts are (2006), (2007) (2008) , (2009), (2010), (2011), (2012), (2013), (2014), (2015) and (2016) on Live-Journal. This is my first year (actually my first post) on Dreamwidth

The question is so common, I often answer it before it is asked. Scripting for the win.

“Will my child ever - ?”

Talk? Talk more? Walk? Be in a regular kindergarten class? Have friends? Graduate from high school? Go to college? Live independently? Fall in love, get married, be a parent?

In very, very rare cases, some of these questions can be answered. There are a few biological conditions where one can say with certainty that a person will not be able to walk, for example. Not many, but a few.

But in most cases, the answer is “We don’t know.”

Even more importantly, the answer is, that in most cases, anyone who claims to be able to predict the future development and life of a very young child doesn’t know. Not the people who say “she will never” and not the people who say “he’ll grow out of it” or “with treatment, your child’s diagnosis will go away.”

Following the “we don’t know,” though, I say something else. Not that a disabled life can be a happy life, which is true but not something most families are ready to hear in this moment. Not, “what if your kid is asexual, which is a real thing, disabled or not, and doesn’t want to fall in love?” which is also true but is also not something most families are prepared to discuss about their two year old who was just diagnosed with autism or cerebral palsy.

No, I say, “I don’t believe your kid is finished.”

Actually, I generally use the child’s name, here. And age. And other specific details. Because it’s not just a script, it’s a conversation. “I don’t believe that Matthew* is finished. He’s two. Look what he’s already learned. I don’t know if he is going to talk more, although most kids do. But I don’t think he is finished. After all, I learn new things every day and I can keep learning. So can you. If we, as adults, can keep learning, why should we set artificial deadlines, that if he doesn’t talk by a certain age, he never will.”

*Not his real name. Unless it is. I see a lot of Matthews. And a lot of Jacobs. And Elijahs. That’s not a breach of confidentiality. It’s a statistical reality. But I don’t think I’ve said this about a Matthew in awhile, actually, so I’m going with Matthew.

Sometimes I quote a study about autistic kids who started talking between 4 and 8 years of age. Sometimes I don’t. I don’t usually bring up Einstein, but sometimes the parents do. I occasionally bring up Stephen Shore, who didn’t talk until he was 4 and has a PhD and I have heard him speak and he has authored books, etc.

It’s sticky to do this, because the “X didn’t Y until she was Z and NOW” trope is actually really ableist. I mean, it’s real, that people develop skills and abilities past the typical age, all the time. But the specific skills and abilities and traits aren’t culturally neutral. There is such a high premium placed on walking, on talking, on living independently, on romantic relationships, and in some communities, on certain levels of academic achievement, that holding these things out as possibilities or probabilities devalues the lives of people who can’t or don’t attain those goals.

But there is no way to go into all of this at the first visit nervous parents have with a new doctor.

After all, if I do my job right, they will be back for further conversations. We’re not finished.

I was fifteen when I learned how to tie my shoes. This was not for lack of people trying to teach me at a more typical age, but I didn’t have the motor planning skills or the visual processing skills, or the language to describe my visual processing and motor disabilities. All I knew is that I had tried and failed and tried again until everyone got completely frustrated, especially me. I actually didn’t learn on shoes at all. Asynchronous development being what it is, I learned to tie a lace while standing on a scaffold learning to hang theatre lights. My teacher, a girl a few years older, patiently taught me how to use the wrench and the various parts of the light. She then told me to tie the cable to the pole using a shoelace. When I asked how, she told me to tie it like a shoelace bow or half-bow. When I explained I didn’t know how to do that, she showed me a half-bow. Slowly and carefully. Two stories up in the air on a scaffolding.

And so I learned to tie shoelaces. If you had asked me at fourteen if I was ever going to be able to tie shoes, I would have shook my head and muttered something about how sad I was Velcro and buckle shoes were not readily available in my size.

Because, you see, tying shoelaces is a useful skill. It opens up a wider range of shoe options. But it is not a necessary achievement. It is not, for everyone, a possible achievement. And people who can’t tie shoes now but may be able to tie shoes later, as much as people who will never be able to tie shoes, are entitled to a range of other options, from Velcro to buckles to parents who tie shoes without comments about “isn’t it about time you. . . “ to personal care assistants, and to potential employers who do not judge applicants by the shoes they wear.

My worth, as a 5 year old and as a fourteen year old, should not ever have been judged by the fact that I couldn’t tie shoes then but would be able to learn some day.

One problem with the term, “developmental delay” is that is suggests a goal that should be met, just late rather than never.

We’ve all got a lot of ableism there to work through. I’m certainly not finished there.

Yesterday I helped run an unusual, if not unique event, a celebration of autistic community for autistic people of all ages, families and professionals. It was a party cleverly disguised as a resource fair. We borrowed a sensory gym and brought in piles of fidgets and books. In the spirit of Autreat, the first autistic run autism conference, we offered what Jim Sinclair described as “opportunity without pressure.”

Professionals from different parts of the community met for the first time and shared information. Parents got a chance to talk to each other, professionals and adult autistics. Kids climbed, assembled trains, stimmed, drew. Someone spent half an hour in the back hallway reading through a book I had suggested might help her in her work with a new client. A parent asked me for books that his child could read about autism.

One invited professional, a speech therapist demonstrating AAC programs, commented that it was good for her to see autistic adults. So much of her work is with young children that she doesn’t really have much chance to see their possible futures. I agreed. Then I handed her a book open to a chapter written by one of the adult autistics in the room running the event about the benefits of typing over talking.

I had a few minutes to speak with one of our exhibitors, from a local disability history project and I talked about my work educating other health care providers about the realities of disability. He asked if it was frustrating, and of course it is, to hear negative and stereotyped notions about disability over and over from professionals working in disability related fields.

And yet, I answered, things are changing. Often at glacially slow speed, I hear the language used by my coworkers shifting, away from function labels, away from “suffering” and “wheelchair bound.” They may not know of books written by disabled adults to share with patients, but they know they exist and to ask me for titles. They ask me to speak on the topic of advocacy.

I looked around the room, full at that point of about 40 people talking, learning or just being disabled together, at an event run by disabled adults and hosted by a children’s rehabilitation hospital.

“I don’t know if this would have been possible even five years ago, here, in this city or in this organization,” I mused.

Of course there is still a lot of work to do.

But as I often tell my families, none of us are finished.

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