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. ( 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.
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. ( . 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. 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.
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.
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” ( 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.
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?
Jun. 25th, 2018 06:57 pm


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.
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.
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.
Feb. 5th, 2018 10:24 pm


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.
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.
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.
“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.)
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 (, 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" (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," 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.
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.
On the eve of April, Sesame Street announces the development of a muppet with autism. This muppet, Julia, has been a character in an on-line book for about two years. Now she has been built into muppet form.

(Personally, I’ve long felt that Bert is autistic. Bottle caps? Pidgeons? Oatmeal? Just wanting to be left in peace and quiet? But that’s another story.)

Sesame Street has a long history of doing disability well. When people ask when I decided to be a Developmental Pediatrician, I sometimes say, "since I was 4 and tried to learn sign language watching Linda on Sesame Street." I remember Big Bird’s excitement when Linda got a closed caption device and could “watch television for the very first time.” I remember when Itzhak Perlman appeared on Sesame Street. He and a young violinist played, and remarked how things that are easy for some people (stairs/playing the violin) are hard for others (stairs/playing the violin. Maybe that was when my career started. I remember the wheelchair-using muppet princess who needed a ramp to get out of her castle. I remember real children with disabilities on the street, Tarah and Emily, who both talked about their disabilities, and a little boy with Down syndrome whose name I did not know at the time who was just there as part of the crowd. I assume he was Jason Kingsley. His mother wrote for Sesame Street and wrote the famous/infamous Welcome To Holland essay. Jason is now an adult who has co-authored a book Emily is now an adult disability blogger worth reading.

With Julia, they did some things well and some things badly. The character is a girl, which helps buck stereotypes. She flaps her hands. She is verbal but not as verbal as other muppets her age. She plays with the other muppets sometimes and does her own thing sometimes. I've seen some criticism that Julia is explained by the other muppets rather than explaining herself, but I think it would probably be less realistic to expect a 4 year old autistic muppet to explain autism than a 4 year old muppet with some other disabilities.

One thing they did well was consult with autistic adults in the development of the character. At least, ASAN representatives report they were consulted. Representatives from Autism Speaks and other parent organizations were consulted. Lots of parents and professionals were consulted too, but some autistic people were actually involved.
What's interesting, though, and by "interesting" I mean "infuriating" is that Sesame Street does not seem to have mentioned any autistic input to the media. 60 Minutes did an entire segment that I stumbled on by accident. The only time the journalist, Lesley Stahl, addressed someone autistic was when she talked to Julia herself. It was very cute and all, having her talk to Julia and Big Bird and Elmo, but in contrast they showed rooms of professional experts who had been consulted. Then they started making a big fuss about how the puppeteer is the mother of an older child with autism. They showed brief video of him but no one talked to him or asked his opinion. There’s a few articles that quote parents talking about how pleased their autistic children are seeing Julia. But not a one autistic person is directly quoted.

When autistic people speak up online about this omission, they are told that the puppeteer is the mother of a child with autism as though this should

On the eve of April, I witness an online conversation about IEPs. Someone mentions she was never permitted at her IEP meetings. The response is horrified, doesn't the parent HAVE to be there? No one recognized that the writer was referencing meetings about her own IEP. (While the student is supposed to attend in the US, this is not a requirement in the country where the poster lives.)

On the eve of April, I prepare to give a talk on autism and advocacy considerations for teens transitioning to adult care and services. The target audience are parents and professionals. The speakers are all professionals, some of whom are also parents. We have a fee for professionals and a lower fee for parents. We don't have a fee for self-advocates because none of the planners thought about them as a potential target audience. There aren't any (openly) autistic people speaking because none of the planners thought about them.
At one point in my talk I plan to quote a friend who is an autistic special education teacher. I expect I will have to say that multiple times before people catch on that this person is actually autistic, that I'm not just referencing the fact that she teaches autistic students (which she does, too, sometimes.)

I tell the story about a similar conference I was involved with a few years ago where I was part of the planning committee, and suggested we invite a young adult with a developmental disability who had recently graduated from high school and was working or in college.

“Good idea, let’s have a parent panel!”

I had to repeat my suggestion three times before anyone in the room grasped that a disabled young adult was a different concept than the parent of a disabled young adult.

April is advertised as Autism Awareness Month, which is being reclaimed as Autistic Acceptance Month. The idea is that “awareness” quickly becomes “bewareness,” a list of statistics and warning signs. All these people, at Sesame Street, in the media, on the online conversation, at the conference I will attend, are all “aware” of autism. Some are professionals who have worked in the field of autism for years, perhaps decades.

What they don’t seem to be aware of is that autistic people are listening when they talk, and that many autistic people are talking, hoping they will listen. Autistic people are talking about everything from language use to sensory integration strategies to the damage caused when people insist on eye contact. Autistic people are talking about the effects of therapies and the effects of media portrayals and the effects of autistic community.

But as any speech-language pathologist can tell you, communication requires at least two partners. And so we are begging our non-autistic conversation partners, some of whom are parents and professionals, to really notice autistic people as folks with a voice, and opinions and experiences that are our own. Notice when we are not invited to present at conferences. Notice when we are not quoted by the media. Notice when we are being talked over when we do speak up.

Because honestly, we could use some allies. The privileging of parent voices over autistic adult voices is so pervasive, people often don’t even notice it is occurring, or that it is a problem when it occurs. Even after we point it out. Sometimes repeatedly.

Is that what they mean when they say we use repetitive language?
J.K. Rowling, as we all know, wrote the seven narrative Harry Potter books.

Then she wrote a novel for adults under her own name. I haven’t read it although I probably should. And along the way she also wrote several other books in the Harry Potter universe.

Then she wrote a murder mystery under the pseudonym of Robert Gailbraith, and then two more books with the same protagonist, Cormoran Strike.

And I haven’t seen more than a sentence or two online addressing the disability aspect in the series, which is interesting because the disabled fan internet community had had a lot to say about disability representation and portrayal in the Harry Potter books, much of it (deservedly) critical. There was discussion about the portrayal of people with realistic disabilities, and the use of disability as metaphor such as werewolfism, and the characters that can be read as autistic. There was a lot to dissect and I continue to see bits of the discussion now and again.

But on Cormoran Strike, nothing.

And yet in my opinion, J.K. Rowling gets Cormoran’s disability right in two ways that I almost never see from a non-disabled author. His disability matters, but disability isn’t everything.

I’m going to take these one at a time, and in reverse order.

Strike’s disability isn’t everything. So often, a disabled character’s sole character trait is their disability, or taking it a tiny step up, disability + one quirk. So the character is blind AND a jokester or uses a wheelchair AND is a computer genius. Beyond that, there’s often no there there.

But Strike has other traits beyond having acquired a disability shortly before the opening of the first novel. He is still adjusting to the physical and psychological reality of his new impairment to some extent, but the books are not at all about “adjusting to disability.” He has problems and character traits and motivations for his actions that don’t relate at all to his disability. His mobility impairment isn’t even necessarily the thing about his appearance his dislikes the most. He is in a financial crisis, he rows with the woman he thinks he loves, he has a clearly strained relationship with his sister, and while his disability interweaves into all of these situations, it isn’t the sole factor.

You can picture Strike before his disability as already being a round person. He was a different person, of course. There is no current non-disabled Strike, and that’s important. But stories could have been written about Strike’s childhood, or college days or time in the military where he would have still been a complete character who did things for reasons, and he would have overall been the same character.

All this is sadly rare.

But aside from books that are all about “adjusting to disability,” it’s also hard to find a book where a character’s disability actually matters. There may be an offhand comment that a character signed something to another, or rolled rather than walked. But overall, many disabled characters go through life without necessarily encountering an inaccessible place or attitude. Characters “happen to be disabled,” perhaps for diversity points, without their disability impacting characterization or plot in realistic ways.

Strike’s disability often matters. His level of impairment fluctuates, which reads true to me and is quite rare in fiction. There are days when his mobility is minimally impaired and days when pain or impairment have significant impact on his plans. So there are times when he would otherwise have walked, or taken public transportation, and now spending money on taxicabs or getting a ride. Distances matter. Surfaces matter. All of these ring true to me as depiction of disability, although I will leave it to others with more personal experience to rate the specific portrayal of Spike’s impairment.

His disability matters when dealing with people, because people think things, say things, do things. His sister’s attitude about his disability is by no means the only strain in their relationship, but it clearly has not improved matters. She brings it up in conversation and outs him to people without his consent in situations where he may otherwise have passed as non-disabled. In turn, he tries to avoid her and lies about his life even more than perhaps he did previously.

Strike’s own attitude matters, also. He is adjusting to disability in a way that seems entirely consistent with his personality. He is not going to be a Paralympian or a poster child for Disability Pride, and that’s just fine with me. He’s certainly not terribly thrilled with the new limits he experiences, or the additional social hurdles they create. But he manages to avoid the bitter stereotype in addition to avoiding the inspirational one.

All of which shouldn’t be rare.

But I read a lot of fiction with disabled protagonists, and it is really rare to find a character and story that manages to make disability matter without being a disability narrative.

It seems to me that Rowling got it right this time.

But I feel like I’ve been reading Cormoran Strike and the Disability Portrayal No One Is Talking About.

Has anyone else in the disability community read these books with a critical disability lens and agree with me? Disagree with me?
Jan. 22nd, 2017 08:45 pm


When I first interviewed for my current job, I asked something along the lines of, “So I know this is a pretty diverse city – how much of that is reflected in the patient population in your practice?”

I was fishing for some sense of whether the practice was mainly caring for white, affluent children of 2 PhD families from the suburbs.

“Actually,” I was told, “the city really isn’t very diverse.”

Oh. Well, he lived and worked there. I didn’t.

So I wasn’t sure what to expect until I moved here.

Now I’m trying to figure out what criteria he was using. Or what criteria I should be using. Because I have lived and worked in a number of places and this seems like one of the more diverse, really.

Some days I walk to work. It’s nearly a mile south, past large houses with iron fences, manicured shrubbery and flagstone paths leading up to stairs. I pass people walking dogs and jogging with babies. The sidewalks are uneven, and in winter, inconsistently shoveled. I saw a Clinton/Pence sign in at least one yard.

There is a synagogue across the street from where I work. It is the closest I have ever lived or worked to a synagogue.

The neighborhood where I work was apparently 40% Jewish at the last census. Two more blocks south I wait for a bus. Girls in long dark skirts pass me as their orthodox school lets out. There is a Jewish Community Center across the street.

Another half block and a man holds up a cardboard sign asking for money.

Back home, I walk three blocks north to the store. There is a Catholic church on the way, and an Episcopal one across the street from it. This is also the closest I’ve ever lived or worked to a church.

I press the button at the intersection and a cheerful voice tells me to wait to cross. The sidewalks here are a bit more even, with more reliable curb cuts.

I’m not the only white face in the grocery store but close to it. I’ve crossed into another neighborhood, one that is largely African-American. There are issues about gentrification I do not completely understand as a recent transplant. I should probably read more. Someone makes a phone call in Spanish from the soup aisle. Two little blond children run ahead of their mother, talking in Swedish.

On the bus again, I hear Mandarin, then Spanish, then a language I cannot identify. Farsi? The bus kneels and deploys the wheelchair lift. People move without comment.

At work, I care for the white children of 2 PhD families from the suburbs and also the children of refugees resettled here. Some days our practice better reflects the diversity of the area than others. Of course, our area includes not just the city but the nearby suburbs and some not-nearby rural areas and towns that thrived back when coal mining was still an industry.

There are certainly cities with a higher percentage of residents from nationally underrepresented minorities, which makes some of them actually less diverse than others. One person is not diverse. Diversity is among all of us.

I attended a protest yesterday.

There were two held in the city at the same time, one women’s march and another one focused on intersectionality which arose when questions arose about the lack of diversity and inclusivity of the original one. It was organized by Black community activists. I found out about it through the local Autistic activist community, which has a not-insignificant overlap with the local LGBTQA+ activist community.

I wore a pin from my medical school’s diversity office, “All shapes, all sizes, all colors, all special,” a pin saying “Health Care for All,” a pin for our local Autistic advocacy group and a peace pin which had been my mother’s in the 1960s.

She now wears a “Dissent is Patriotic” pin, as well as one of my “all special” ones.

I’m not a fan of “special” as a euphemism for disabled, or to imply that some people are more special than others. But even though it is a little cutesy, I’m OK with proclaiming that all people are special. I’m a pediatrician. I can be a little cutesy on occasion.

The local media notes the rally started with a prayer. It doesn’t mention that the prayer was from the West African tradition, including call and response I believe was in Yoruba, and including the burning of sage and the offering of honey and rum.

I did see several people in clerical collars in the crowd.

Also signs in Arabic and Hebrew. I don’t know what they said.

Someone spoke in Spanish. Someone else interpreted her speech into English. Which was then re-interpreted into ASL.

There were the usual signs. If you’ve been to a protest or seen pictures from the march in DC or any of the others, you know the usual slogans. I did like “I’m with her” with arrows in every which direction.

But the two I liked the most had local flavor

“Pittsburgh is an immigrant town. We build bridges. We don’t tear them down”

And, on a red shirt with a picture of Mister Rogers’ trolley, “I will be your neighbor.”
Like so many events in autistic history, Autistics Speaking Day started as a protest. Like so many events, it has grown into so much more. Read more here:

Writing the Brochure I Want to Read in the World

I want a brochure I can hand families of newly diagnosed autistic children. Something readable, 3-4 pages, giving accurate information and guiding parents on a starting pathway. I say all sorts of things about autism in my visits, but often parents don’t seem to hear much after the word “autism.” A handout would change that.

There are documents that already exist, of course, that claim to do just this.

I can’t use any of them.

I’ve started to write my own. I got about two pages in and then other, more time sensitive obligations swam into view. I need to go back and finish.

In the meantime I’m recommending “The Real Experts.” It was written by autistic adults for the parents of newly diagnosed children, I say.

I’m not sure the words “autistic adults” register.

And I’m saying that many autistic people find eye contact painful, not to mention it is difficult to focus on what someone is saying if forced to make eye contact at the same time.

I’m not sure if my voice and the voice of those I’m quoting is louder than that of their (presumably neurotypical) speech therapist.

I’m not sure they hear me reference the local advocacy group run by autistics or register that I recommend a website for stim toys run by an autistic person or that the conference I’m describing was run by and for autistic people.

Because other, louder, more privileged voices have gotten to them first.

So many of us are speaking now. We’re writing books and writing blogs and organizing ourselves, online and off. I come home from work, where people were talking about autism all day, and curl up to a night of autistic people talking. We had a whole table full of books by autistic authors (auti-biographies, if you will) at our celebration last spring.

But for us to reach the audience of impressionable parents of impressionable young children, we need to be heard. We need them to hear the fact that we are even here to be heard.

And so I reference autistic people speaking (writing, typing, blogging) a lot, often just in casual speech, hoping that it will start to sound comfortable and familiar and expected that a supposed expert on autism references autistic people as a matter of course.

And at some point I am going to sit down and finish that brochure. Because when the parents get home and put their young children to bed and are ready to listen, the first words I want them to read are ours.
I’ve been lately whomped by the disability binary and thinking about how much in disability comes down to narrow tolerances. I’m not even sure that’s the right term, but I can’t think of a better one.

The disability binary is the idea that people are either 100% disabled or 100% non-disabled, when in fact, most disabilities lie somewhere in between. There are people with no vision at all, and they deserve recognition and accessibility, of course. But many blind people have some usable vision and should be permitted to acknowledge and use that vision while also having access needs met. Many people who use wheelchairs can walk, sometimes, under certain circumstances. Autistic people do not magically become non-autistic when they talk, write, work or participate in a social activity.

“Can’t” is such a loaded term. First of all, the story sold to children that “there is no such word as can’t” is deeply harmful. Children, particularly children with disabilities, need to learn to recognize their limits, describe them accurately and advocate for their needs. Denial doesn’t magically create abilities.

But “can’t” as it relates to most disabilities is very hard. And this doesn’t seem understood by many people who should probably know better. I recently spent 90 minutes in training with a smartphone (a saga in itself) with a representative from our IT department and a rehabilitation engineer, someone whose job description boils down to creating technical access solutions for people. And she kept asking me, “can you do this?”

And in some cases I couldn’t and in some cases I could. Sort of. Being able to move my finger in a certain way on the screen, slowly and in ideal experimental conditions, doesn’t mean that that same finger movement is going to be a reliable way for me to interface with a device in the wild, particularly at speed. And being able to answer the phone while it is still ringing seems to fall into the minimal requirements of something to be useful as a phone. So yes, I can do that, in that my finger can make the movement. No, I can’t do it quickly enough, reliably enough for it to be a meaningful ability. Which answer is the lie?

I can write, also. Comes in handy for signing my name and scrawling Post-Its for co-workers. Doesn’t mean I can write an essay.

I’m reminded a bit of the question asked by the youngest person present at a Seder, “Why is it that other nights we eat leavened OR unleavened bread, but tonight only unleavened bread?”

There are so many situations where it isn’t that I “can’t” do something at all, but I am reduced to one option, or markedly fewer options. I can sit well in only a subset of chairs. I can write reasonably with only a certain kind of pen. I can tap on the phone only if it is in a certain position and my hand is positioned in a certain way. My tolerances for success are narrower.

And so it was that I went to a professional conference in an unfamiliar city. I did not request any specific accommodations because there wasn’t anything in particular I could anticipate needing. Looking back in retrospect, I still can’t figure out if there was anything I could have requested that would have helped in any way.

The conference hotel was in a beautiful location in an historic, picturesque setting. It was so historic and so picturesque that the nearest streets were cobblestoned. People without mobility impairments could manage the cobblestones without a thought. Some people with more significant impairment than I have would not have been able to navigate at all. I was hampered and grumpy but not immobilized.

The first crosswalk had a lovely traffic light. When you pressed the button for the crosswalk, it not only spoke when it was safe to cross but even read the second countdown alive. I always appreciate this verbal confirmation of the visual signal, even though I am able to see the visual signal, due to my slower visual processing. The second crosswalk had no light at all. I stood for 5 minutes trying to analyze the traffic pattern as cars came around a circle, before I was able to cross. The next street was the same, and the next.

I made it to CVS to buy milk and shoelaces and I made it to Subway to buy dinner and then beat a shaken retreat back to the hotel. At least I was able to turn off the air conditioning in my room, I had internet access and the refrigerator I requested for my insulin was actually in the room.

The first two days of the conference, I participated in several workshops. Some sessions were on the first floor and some on the second floor. The hotel had three elevators, but only one was working. There were also up and down escalators between the first and second floors but one was not working. There were also stairs between the first and second floors. One elevator was not enough to service the needs of the entire hotel including getting people between the first and second floors efficiently. So I started spending lunch on the second floor, plugging my computer into a nearby outlet, rather than going back up to my hotel room or networking on the first floor where there were people but not outlets.

And it was just one thing like that after another. Little things. Things that worked, but weren’t great, that took an emotional toll, which used rather than saved spoons. The reception which offered cheeses, vegetables and two pasta dishes, one with pork and one with lobster, which wasn’t a disability thing for me but the lack of a vegetarian dish with actual substance didn’t exactly scream “inclusion” either. The new “ap” that I couldn’t use, so I had to go back and forth to the reception desk to find out where events would be held.

The whole time I had the sense of opulence and prosperity and exclusion. I couldn’t help thinking about two other conferences I have attended, both cobbled together on barebones budgets, one so barebones that lunch was take-out. One offered multiple seating options, a clear schedule and a firm statement that participants were not to touch one another without permission. The other discussed accessible sidewalks and transportation as part of the planning process. Of course, people with disabilities were central (in one case, solely involved) in the organizing process.

This larger, glitzy, better funded conference understands the idea of specific accommodation for specific stated needs. There’s a law for that. They give you a chance, on your application, to request these accommodations. They don’t understand that people with disabilities may need something other than specific individual accommodation to be truly included. We often need a wider range of options, from transportation to seating to dining. That’s from lived experience. “No cobblestones” isn’t a matter of accommodation. “I need the schedule in hardprint rather than on an ap” can’t be requested if they don’t tell you in advance about the ap.

Did I mention that all the professionals at this conference work to provide care for children with disabilities?

I have attended this conference four times, and have been knocked over twice by other disability professionals, one of whom tapped me on the shoulder and another of whom grabbed my arm.

Star Ford has a wonderful piece on “Deep Accommodation, or the idea that we can change society so that more people are included, without requiring specific accommodations.

Universal design is another, related concept. If you have both a (working) elevator and stairs readily available, then almost everyone can get to the second floor without additional consideration. If you offer schedules in multiple formats, an array of seating options,

A huge part of this is getting away from the binary. We need to shift the question from “can you do this?” to “how can we ensure the most people can participate optimally?”

A huge part of this is offering more options, not as special accommodations but as a matter of course.

A huge part of this is ensuring people with disabilities are involved in the planning from the onset. It’s not a matter of them remembering to accommodate us. It’s a matter of us being part of them.
I saw it first on CNN. A “feel good” story. Autism was in the title so I clicked.

The gist is, a group of college football players visited a middle school. One of the footballers saw a child sitting alone in the cafeteria and joined him. An autistic child. They apparently had a whole conversation. Someone took a picture and sent it to the child’s mother. She was thrilled because she asks her son every day if he eats lunch with someone and he often eats alone. He doesn’t seem to mind. But she was happy to know that, at least for one day, she didn’t have to worry about him eating lunch alone.

Cue “awws” across the internet.

As the next step in my morning internet ritual, I clicked onto the blog of a mother of a child with a disability. She had the story posted with commentary that people should use the photo to talk to their (non-disabled) children about including those with disabilities. She noted the “warm fuzzy” factor but commented the story didn’t go far enough. How about tomorrow? What do we do to make sure this child has someone to sit with tomorrow?

I responded, pointing out that the story didn’t really give me the warm fuzzies in the first place. It more makes me tired. Another story about someone doing something nice to a disabled person, without any indication about how the disabled person felt about it.

And furthermore, no evidence that what was done was even “nice.”

She responded that stories like this seldom do quote the child with the disability, but that the child had seemed receptive.

Shouldn’t the bar be much higher than “receptive,” though? Shouldn’t it be “liked” or “enjoyed” or “wanted?”

Later in the day, I saw another post about the story, this from a radical disability blogger who often writes about how people accost him, a wheelchair user, with questions, comments and assumptions in public.

He wrote about a “basic question” that no one asked, which is why this student was sitting alone in the first place. He does question if the child wanted to be alone, but largely framed the question as to why the school staff hadn’t done something about his daily aloneness.

I think “what does the child want” is the even more basic question that should have been asked, not just before writing this story, but even earlier, when writing up an IEP or questioning the child on returning home from school at the end of the day. I frame this in the same way I view other “help” foisted onto people with disabilities without checking first to see if it is wanted or needed. We shouldn’t help little old ladies across streets they don’t want to cross, and we also shouldn’t foist company onto people in their “down time.”

As an autistic person, I can think of lots of reason why this child might have preferred to be sitting alone. His other option might have been sitting with bullies, which was my only other option at his age. Of course, the adults didn’t see the kids talking to me as bullies. They saw them as nice. Nice people peppering me with questions about why I did all the things I did differently than everyone else, from my food, my wardrobe and my vocabulary. Alone was certainly preferable to that, and if this child is being bullied, that should be addressed.

But there are other reasons for a person, any person but most specifically, an autistic person, to seek solitude. Perhaps the only choices of people to talk with have such vastly different interests there would be no topic of conversation. Perhaps the sound of others chewing food is distressing. Perhaps one just needs some time to recharge and think, without having to process language and social cues.

Karla Fisher has a great visual she uses for IEP advocacy called “Our breaks are not like NT breaks.” She points out that, for an autistic person, lunch and recess can be the most stressful times of the day.

On a regular basis at work, I hear about children who are alone at lunch and recess, from their worried parents. I always ask the child what they like to do at those times. Sometimes I hear stories of wanting to play but being excluded. Often I hear stories of not being able to find someone who wants to play or do similar things. And then I hear about the child who prefers to spend recess looking for rocks – alone. It always seems I am the first person to have ever asked the question.

The autistic community has a solution for this, for autistic events. They are Color Communication Badges. With green displayed, the message is to approach. With yellow, only known people are welcomed. With red displayed, the wearer is to be left alone except in direst emergency. This makes it easy at autistic events, to know if a person sitting alone would relish or loathe company.

Why don’t we have something like that at schools? Color badges or seat markers or perhaps a choice chart the child can use in class before recess

I’ve been asked to speak on the topic of autism and advocacy later this fall, at a professional conference on autism and transition to adult lives. I’m putting together a presentation they aren’t going to expect, including a brief history of the disability rights and neurodiversity movements, profiles of some Autistic activists, and some hints about how to evaluate advocacy organizations. And then I am going to talk about how non-autistic parents and professionals can support advocacy of autistic people.

A big part of supporting advocacy is listening to what people say about themselves, their lives and their preferences. They may say it using words to senators, or they may say it using gestures to their preschool teachers. A hand held up is advocacy. Bringing shoes to the door is advocacy. “No!” is advocacy. It is important to teach advocacy, but equally important to teach others to listen for it and to it.

If an advocate sends a message, but no one respects it, does it make a sound?

So you see, we don’t really know what the story is here at all.

It might be:

Autistic child delighted to have footballer join him for lunch!

And that would be grand. I would feel good. (I would still ask the question of if he wants to eat lunch alone on other days, though.)

Or it could be:

Football player invaded privacy of autistic student!

Or perhaps, there could have been another story:

Football player respected autistic child’s preference and right for privacy!

(That’s the story I want to read, some time. That’s the story I never see written. It would be a rare event, Man Bites Dog level of novelty that should make top headlines)

But we just don’t know. We know how the child’s mother, the cafeteria worker, the football player, and now, the entire internet felt, but not the actual person involved.

And that’s a huge problem. Yes, in stories like this, the child is seldom interviewed or quoted. That’s the problem. People with disabilities are so seldom interviewed in stories that are about things we do, and even less so in stories that are about things people do for us, or to us.

We’re reduced to objects.


I object
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