nightengalesknd

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.

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?

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”

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.

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.

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.

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.

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.

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.

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.