a parliament of owls

life with asperger's

Asperger’s is Not a Mental Disorder

Asperger’s is not a mental disorder. You’ll find our diagnosis called one frequently in the popular press. Although the autism spectrum is a diagnosis in the DSM-5, which is a “diagnostic and statistical manual for mental disorders,” to be accurate, we should refer to Asperger’s as a “neurodevelopmental condition.”

I’ll begin by unpacking why I prefer “condition” as the second term in this descriptor for Asperger’s.

First, I use the term “condition” because, as many of us and our allies have pointed out, Asperger’s embodies a developmental difference that can bring with it gifts (such as a fine eye for detail, a tendency to think outside the box, and a predisposition to rational decision making) as well as just plain divergence in our experience of both the social and physical worlds. Second, I use the term “condition” because the term connotes that perhaps it’s not entirely positive. Many of us and our allies have pointed this out as well: that to suggest Asperger’s in particular, or autism in general, are entirely positive or neutral experiences is to downplay the challenges of living with it, which for most of us is a reality and for some of us can be so profound that we require disability assistance or are driven to imagine an early way out.

Now, I’ll unpack why I prefer “neurodevelopmental” over “mental” as the first term in this descriptor for Asperger’s. When Asperger’s is referred to as a “mental” disorder, the focus is on an experience entirely in our heads, whether cognitive or affective. The reality is that autism in general, and Asperger’s in particular, is also very much an embodied experience.

In neurodevelopmental conditions, the brain and/or central nervous system diverges from a neurotypical standard of normative development. This impacts many aspects of embodiment that go beyond Asperger’s defining characteristics, such as “qualitative impairment in social interaction” (DSM-4); “restricted repetitive and stereotyped patterns of behavior, interests, and activities” (DSM-4); limited cognitive empathy and theory of mind; and weak executive functioning and central coherence. Several mental and mood disorders commonly co-occur with Asperger’s, including obsessive-compulsive disorder, generalized and social anxiety, and depression, but these are likely to have been responses to the condition rather than causes of it. The only defining trait of Asperger’s that is often associated with physical experience is sensory sensitivity, but since that often understood as (merely) perceptual, this is often implicitly taken as more of a mental than a physical concern.

Although autism research continues to search for definitive biomarkers and genetic signatures that can serve as physical indicators for autism, the field has found many physical conditions that correlate with embodiment on the spectrum. In enumerating these, I hope to give a sense of what living in an autistic body means. Not all autistics share all of these physical conditions, but these are experienced by many of us with greater frequency and with increased co-occurrence than in neurotypical populations. Except for seizures (which I have not had), and leaky gut (which I could not confirm either way), I have all of the physical conditions listed below.

  • Sensory Processing Disorder (including Auditory Processing Disorder): The brain has difficulty processing the sensory information it receives. In Auditory Processing Disorder, for example, someone may seem to have normal hearing in quiet environments but has difficulty filtering out speech or desired noises from background noise, poor memory for anything heard, and may have difficulty distinguishing between near sounds. — At school and work, I compensate for APD by always taking notes.
  • Hyper- and hypo-stimulation: Increased and decreased sensory response to stimuli (such as insensitivity to cold but increased response to heat, chemical smells, tactile sensations, or certain sounds).
  • Heightened perception: The ability to perceive better or more than is typical, such as through “super vision.” — For me, this is, unfortunately, a heightened sense of smell.
  • Slower pupil response: The pupil contracts more slowly than is typical to flashes of light. — For me, this made night driving almost impossible.
  • Larger pupil size: The last time the optometrist went to use eye drops to dilate my pupils, he remarked that he didn’t know why he bothered: My pupils are so large, they seem naturally, permanently dilated. I generally have sensitivity to light and prefer dim spaces.
  • Faster heart rate
  • Apraxia of speech: Difficulty in producing speech in the way that it is thought or planned. — I have high verbal ability but also this (which causes me to think one word and say another). I have much greater difficulty with speaking than writing in this respect.
  • Autoimmune disorders, including a higher prevalence in our families (e.g., asthma, eczema, allergies including food allergies, thyroiditis, arthritis), sometimes paired with endocrine dysregulation. — For me, this is a form of hypothyroidism: Hashimoto’s Syndrome.
  • Obesity
  • Irritable bowel syndrome
  • Leaky gut: When the intestines are “too permeable” and “leak their contents into the bloodstream.”
  • Low muscle tone and core muscle weakness (aka hypotonia, leading to trunk instability)
  • Joint hypermobility (particularly among women on the spectrum, perhaps because of estrogen levels)
  • Poor sensorimotor integration
  • Dyspraxia: A deficit in gross (clumsiness, altered gate, poor coordination and balance) and fine motor skills (e.g., handwriting difficulty).
  • Insomnia and other sleep disorders: We take an average of 11 minutes longer to fall asleep and more of us have seriously disordered sleep.
  • Seizures
  • Stimming (i.e., self-stimulation, a repetitive physical movement or vocalization that is relaxing / pleasurable, used to relieve stress and increase inward focus), with the “dark side” of stimming being self-injury (this can be as mild as excoriation). In the research, often associated with our “restricted repetitive and stereotyped patterns of behavior,” and so we come full circle to find that one of our “mental” traits is indeed linked to the physicality of our condition.

 

 

 

 

 

 

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Advice: A Teen Asks Why Asperger’s Isn’t an Excuse

This teen’s question on a public Asperger’s forum touches on one of my anxieties about upcoming generations who have had the benefit of early diagnosis. Those of us who grew up without one had the difficulty of learning to compensate because we had challenges that were not made sense of by a diagnosis and usually received no support for these issues. In some ways, this made us strong. We pushed through, when we did, and made it work. So, too, do many younger Aspies who have been diagnosed and received supports. But then there are others who take the diagnosis as an excuse not to force themselves to do difficult or uncomfortable things or to practice self-control. As parents, teachers, mentors, and friends, we must ask that Aspies who receive early diagnosis continue to push themselves so that they can, as much as possible, become independent and contributing adults. Temple Grandin often talks practically and compassionately to Aspies and their parents about the importance of this.

Question:

“My parents tell me not to use Asperger’s an excuse to misbehave. I don’t understand that. I am not a neurotypical. I feel that my Asperger’s defines who I am. How come it’s not an excuse for misbehavior at home?” [In a follow-up discussion to a different reply, the writer added that the misbehavior at home was refusing to do last-minute chores and being disrespectful to his parents in the way he declined.]

My Reply:

I agree with your parents to some extent. I am autistic and so is my son. If you are high-functioning, then you can be expected to take care of your hygiene, eat properly, pick up around the house (to contribute your share of the work in living there), perform in school, and, as you age, support yourself with a job. The world, even your parents, do not owe you a free pass / a living. You can learn to compensate for aspects of your diagnosis that make some of these things more challenging.

In turn, your parents should help you learn to compensate, such as by explaining ways of managing a schedule or doing tasks without getting sensory triggered (I provide my son with kitchen gloves for tasks like taking out the garbage and allow him to put away clean dishes since he hates touching dirty ones — I do that part instead). They should learn the importance of providing you with advance notice of having to do things (like do a chore or go on an outing to the store or a relative’s). If they forget, do as they ask but also request (politely) advance notice in the future to help manage your stress. Keep in mind that when you enter work life you will get last minute requests, too — you need to train yourself to tolerate this as much as possible. I know it is stressful — I have the same issue.

I’m not sure in what other ways your parents might think you are misbehaving. If it’s something like focusing on your interests (what some people call “indulging”), I would say that is self-care and not misbehavior. You need to do this to stay well emotionally. In that case, stand up for it. Your parents may become more accepting of this if your other behaviors fall into line with what should be expected of all capable adults or forming adults. If it’s for being irritable or rude, then apologize (even if, yes, this is attributable to your diagnosis), and try to do better. It’s not fun to live with someone who hurts your feelings, even if there’s an explanation for it.

TLDR: A high-functioning autism diagnosis does not excuse any of us from being responsible for ourselves or contributing to the world, even if some of that is more difficult for us.

[Question edited for consistency of spelling and concision.]

So You Say You’re Autistic

So you say you’re autistic, or have Asperger’s, or whatever. Well… You don’t look autistic. You look just like anyone else. You make eye contact. Plus, you seem to be able to hold up your end of a conversation. There doesn’t seem to be anything wrong with you, as far as I can tell. I mean, true autistics can’t talk. They hit themselves. If that’s autistic, you aren’t autistic.

Okay, okay, maybe you’re autistic in some way, but how autistic can you be, really? And what do you want me to do with that?

I mean, let’s say I accept that you’re autistic. Does that mean you expect special treatment? Like what? Am I supposed to ignore every time you’re rude to me or embarrass me in public? What about when you’re late all the time? You knew when we were supposed to be there at Y:00, but it’s like you just don’t care. You get involved in doing something on the computer and next thing I know you’ve lost all track of what you’re supposed to be doing. You’re an adult for Christ’s sake. You can get places on time.

And it’s like, you have no awareness of when you’ve driven a topic into the ground. You go on and on about X in the most excruciating detail. I mean, you don’t even realize I stopped listening 20 minutes ago. Or that other thing you do. You switch topics right in the middle of a conversation. No warning, no context, nothing. And then even if I am listening, I have no idea what you are talking about.

Yes, a car alarm just went off outside. Calm down. It’s not like the house is on fire. Stop that. Stop covering your ears. You look ridiculous. It’s just a car alarm. I don’t like that sound either, but you don’t see me covering my ears.

Back to what I was saying. Look, you have to get used to going out and talking to people. Real people, not people online. Yes, I know that takes a lot of energy for you. Not everyone’s social, but it’s important to be social, you know? You need to learn how to interact with other people and get along with them. Sure, they ignore you sometimes or act like you’re weird. I mean, you’re a little different, okay? I’m not going to lie, but so what? Everyone’s different.

Don’t try changing the topic. No, I don’t smell anything. I already took the garbage out; I told you I did. No, I did not wash out the can. I’m not going to wash it every time I take it out — nobody does that. That’s why it has a lid. Then turn the fan on. Point it away from your face if you don’t like the air hitting your face.

For crying out loud, have you ever tried living with yourself?

On Identifying as Autistic

Not long ago, I was talking about being autistic with a woman who became angry that I was identifying with a medical label. She (a non-autistic) found this dehumanizing. I explained to her that some self-identifications, such as this one, can provide a helpful way of organizing a particular understanding of oneself and others. I argued that we (all of us) should be allowed to choose our self-identifications based on which ones seem most useful (and to provide a contrast I explained that I do not much identify with being a woman or a mother because I don’t find those identifications helpful or interesting, which further unsettled her).

Today, when watching fellow autistic John Elder Robison’s Switched On book talk with his Beth Israel Deaconess neurologist (via C-SPAN), I learned that some high IQ, high functioning autistics’ brains have measurably more plasticity than average. Dr. Alvaro Pascual-Leone said that this enables them to master new domains of knowledge so quickly and well that it is akin to a “savant” ability. I had to pause the program. For many years, I have tried to explain this quality of my mind, but did not have a conceptual basis or a language for it. I immediately recognized myself in what Robison and his doctor described. I am able to immerse myself in new fields of knowledge so rapidly and thoroughly that switching industries and editing in disparate disciplines has been relatively easy for me (with the only restrictions being mathematical and spatial reasoning, where my abilities are just average). Robison said that throughout his life, this made him feel like a fraud–that he was faking his moves into new industries (classic imposter syndrome). Actually, Dr. Pascual-Leone said, Robison’s ability to understand and master new domains on his own is evidence of his gift.

And this is why being able to identify as autistic is so important for those of us who do. Because we don’t come with an owner’s manual and because most other people we encounter do not operate in the same way, we need to have a way to achieve better self-understanding. This will, in part, be through a medical construct–because there is a biological basis for our developmental differences–but it goes beyond a medical construct in describing cognitive, psychological, and social differences that follow from but are not entirely determined by it.

Responding to /Neurotribes/

I’ve just finished reading Steve Silberman’s Neurotribes. This book creates the first comprehensive history of autistics, linking us to our progression of diagnosis and treatment in the West and to other cultural groups including the disability activist movement (within autism, first dominated by parents and then taken up by ourselves) and electronics / computer / ham radio / internet and sci fi-fantasy fandoms (which gave us a home among other eccentrics — my husband and I have long called sci fi-fantasy fandom our “tribe”). The first third or so of the book hit me hard — it was difficult to get through — because of the misunderstanding and mistreatment of people on the spectrum (dehumanization, extermination, institutionalization).

The overall narrative moves from how we were defined by others, through the lens of pathology, to become defined in cooperation with others as well as by and for ourselves. Some of the writing is feel-good glib (too neatly concluded, too optimistically joined — he loves a hero narrative) and the author definitely takes sides on some of our internal controversies (sides I usually agree with, but sides nonetheless). For example, not everyone diagnosed with autism feels comfortable with its being understood as either a major filter for our perception / cognition or as the/a crucial dimension of our subjectivity / social identification.

Why does this matter? Because, by extension, not everyone diagnosed with autism wants to be part of a community of autistics or wants to belong to a cultural group identified with autism. Even those of us who do have our limits. Silberman seems to think that these are by default good things, empowering things — he has an extrovert’s bias. Community is always already positive, desirable, even to the point of nostalgic fantasies of autistics meeting in conventions and grokking one another, sleeping in public near one another, stimming together in hallways — I can’t tell you how uncomfortable these descriptions of communal experiences made me (head for the hills!).

Despite discomfort with the rather emotional and physically embodied models of community Silberman evokes, I spend hours each week giving anonymous advice online to other autistics and their loved ones and benefit from feeling a part of that community because it has helped me to understand and accept myself. At the same time, my son would rather not be part of the community, or even think of himself primarily as autistic, but pass as neurotypical because that helps him to feel unremarked and capable. Both can be decent options as long as the clinical label isn’t used to exclude, reduce, and deny (as it has too often in the past and sometimes continues to do in the present).

But Silberman also champions the cause of neurodiversity and its value to society. Although that is often reduced to its practical benefits (ala Temple Grandin), maybe that is a start to others accepting that humanity benefits when we broaden our sense of who matters (all of us) and how we ought to treat them (with kindness and inclusion). For this and for the comprehensive history of autistics told here for the first time, this is truly a valuable book, one that expands our potential for understanding difference along a different vector than we usually think of and are more familiar with as a general society or as academics (race, gender, class, sexuality, religion, etc.).

8 Thoughts that Can Help with Accepting Your Asperger’s Diagnosis

1) You are still the same person you were before the diagnosis. The diagnosis is just a label.

2) The diagnosis only gathers together and describes some things about you. It isn’t the whole of you.

3) You can use this new self-knowledge to improve your life. For example, realizing that my autism caused sensory issues, and associated stress, I began to take them more seriously and to improve my environment to reduce stress. That’s made me a happier person.

4) You now belong to a community of other people on the spectrum. You’ll find that we have many shared experiences and that you’re not as alone or as different as you might have felt before.

5) No one else has to know. It’s your right to tell or not tell anyone about your diagnosis.

6) Depending on your challenges, being diagnosed with high functioning autism / Asperger’s doesn’t mean you can’t accomplish whatever your goals might be. I’ve been married 30 years, have a doctorate, a great kid, etc. You might need to strategize how to accomplish your goals so that you can succeed given your challenges, but you can do it.

7)  This developmental difference brings gifts as well as challenges. Many of us have a range of better-than-average abilities as a result, such as fluid / abstract thinking; creative problem-solving; the ability to observe and remember detail; the ability to find and follow patterns; intensity of interests and concentration on them; the ability to think in systems and/or visually; extra spatial, mathematical, technical, or verbal capacity, and so on.

8) Everyone has challenges. This one just happens to be yours. You may not know what other people are dealing with (diabetes, an alcoholic parent, problems covering the rent, a broken heart), but everyone is dealing with something. It’s not what we’re challenged with but how we face those challenges on a daily basis that matters.

7 Things the Media Gets Wrong on Asperger’s

Media coverage of Asperger’s sometimes gets it wrong. Here’s what:

Asperger’s is a “mental illness.” Just no. Asperger’s is a developmental difference that can lead to certain disabilities. When a commentator chooses to define us by our disability, we get labeled with a “neurological disorder,” which is still not quite the same as a mental illness. Our brains have developed differently, and some of those differences may present a challenge, but these differences are not necessarily dysfunctional and they are not the result of disease. That said, there is no shame in mental illness, and Aspies can exhibit cognitive and behavioral differences that respond to psychological and psychiatric treatments.

Asperger’s can be “overcome” or “cured.” Also no. Aspies can learn to compensate for deficits or challenges due to their developmental difference, but it is a lifelong difference. Recently, John Elder Robison’s account (Look Me in the Eye) of having participated in a neurological experiment (transcranial magnetic stimulation) that improved his cognitive empathy is making the rounds (the new book is Switched On). He claims to have had the experience, however temporarily, of being to feel and perceive things he was unable to feel and perceive before. He doesn’t claim a cure himself–just a transformation that is, so far as we know, unique to him, but others writing about the book have made the claim. To my view, the jury is still out on whether the experience will generalize to our population. And, even if that were possible, there are many within our community who wouldn’t choose to change who they are at such a fundamental level.

Aspies don’t mind doing “boring” and “repetitive tasks.” Got something tedious? Hire an Aspie. Just no. Aspies are keen on identifying, tracing, and completing patterns. We are systems thinkers. Does that mean we are able to tolerate boredom better than others? In fact, we tolerate boredom less well (one of our defining traits is a passionate devotion to “special interests”), but what bores you may not be the same as what bores us.

Aspies are “good with numbers and technology.” Many efforts to hire Aspies into the workforce currently focus on IT positions. This might work for some Aspies, but will it work for all of us?  Still no. Some Aspies are good with numbers and some are good with tech. However, one of the defining traits of Aspies is highly differentiated areas of ability and the areas of ability may differ. There are some Aspies who are actually more verbally than mathematically gifted, and one study has found that we have higher abilities than normal in “fluid problem-solving” (aka “abstract reasoning ability”).

Aspies “cannot tell a lie.” Just no. Aspies can learn to lie just like any other human being, especially in order to avoid getting into trouble. Most of us strongly prefer not to lie, and to our own disadvantage resist lying even in small ways, for reasons we don’t fully understand. We even have a tendency to share disadvantageous truths about ourselves or anything. I believe we tend to be straight shooters and rule followers because the system of social reality is set up that way, and we follow systems, preferring predictability, order, and even perfection. We also tend to be bad liars and we dislike having to conform to the social norms and expectations that would induce someone to lie to begin with.

Aspies are disproportionately mass murderers. Definitely no. Aspies don’t tend toward violence any more than other human beings. If you counted up all the mass murders historically or presently, most of them would not be Aspies. However, because we have the antisocial loner as a popular figure (not all Aspies are antisocial loners) for mass murderers (especially school shooters), the media has come to associate Asperger’s with these tragedies, even speculating on whether a shooter was thought to have or might have had Asperger’s. Even in cases where a shooter is a confirmed Aspie, at least one expert analysis claims that it is compounding psychopathology and not developmental difference alone that is probably an underlying cause in most cases. Perpetuating this association and speculating on it as a cause of violence is irresponsible. (Click here for a good opinion piece on this topic by Andrew Solomon.)

Aspies “lack empathy.” Finally, no. When people say that Aspies lack empathy, what they usually mean is that we are unable to feel for others. However, studies have shown that Aspies have a normal or even pronounced ability to feel for others. Many in our community feel especially close to animals. Aspies have a deficit not in affective empathy but in cognitive empathy. That is, we have difficulty imagining what others are thinking or feeling. We have weak “theory of mind.” Couple our weak theory of mind with a tendency to just say whatever we are thinking without social filters or to not do what is expected around a social occasion or as a social response to another’s expression of feeling, and we can seem insensitive, odd, or cold. However, once an Aspie is aware of what someone else is feeling and is able to understand why he or she is feeling that way, empathy is as likely to follow as it is for anyone not on the spectrum.

 

Reading Aspies through a Conventional Lens

“All human beings look out at the world through eye glasses imposed upon them by their own neurology. Then, they assign meaning to the behavior of others according to the meaning that behavior would have were they themselves engaged in it. Most times the guess is correct, but sometimes – like when neurotypicals (NTs) are looking at autistics – the guess can be wrong.” Judy Endow

Often wrong, yes. Tell it like it is, Judy Endow. My workplace held a training session on diversity and inclusion today, conducted by a very well informed and personable national consultant, David Bowman of Boston. I asked him how to deal with this kind of misinterpretation, when people interpret the behavior of an autistic along convention lines.

I told him that I know from what others say later that on first meeting I can come off as standoffish (I’m inwardly focused, concentrate intensely, dislike interruption, feel uncomfortable with eye contact, run on either a logical / thinking or social / emotional track and at the office often opt for the former and sometimes withdraw from overwhelming sensory triggers like strong perfume or a loud voice). They can interpret this as coldness or arrogance, neither of which is in my character.

I told him I have tried to help people interpret me correctly by disclosing my autism but found that even most educated people don’t know what that means, which leads to more and sometimes worse misinterpretation (a colleague recently supposed that I don’t drive because I have trouble focusing — Aspies are hyperfocused when engaged in an activity that interests them, and survival in the moment is in everyone’s interest — it’s the sensory issues that are stressful).

He apologized that he didn’t have any help for me, saying this was beyond his expertise. However, he added what he said what he hoped was a compliment — that I didn’t seem autistic or in any way socially inappropriate to him — I interacted positively with others, and he’d been watching me carefully since I asked challenging questions. He’d guessed I was one of the PhDs he’d known would be there (but hadn’t wanted named so that didn’t bias him), because I’d made him think, but that was it. I have to say, I was relieved.

Gender Dysphoria and Bodily Estrangement

A small study based in a gender dysphoria clinic has just found that “almost a quarter of kids with gender dysphoria” are “likely to have Asperger’s.” At least one other study has found that people with Aspergers have higher than baseline rates of the same. Few people who are wired conventionally are aware of how much that wiring affects a basic sense of self, such as one’s relationship to the body. For me, the body is an alien entity, a vehicle that carries my consciousness even as it synthesizes and synergizes its production. Without a neurologically based rewards system for social thinking or feeling, I also have no additional inclination to conform to received views about the body or how I should relate to it. Therefore, my sense of gender and sexuality is based on my partially independently formed concept of these rather than the vehicle or what I’ve taken in about it from others directly or via media.

From a very early age, I did not identify as female, and I often feel a negative response to social conventions that attempt to identify me as one (such as the label “Mrs” or being called a “mother,” when I am only my son’s mother and my marital state does not define me any more than it does a “Mr.”). I am also equally attracted to males and females and have been for as long as I can remember. But physical touch, presence, and relations are unimportant to me, and in some ways undesirable unless I already have significant emotional intimacy with the other person. I find that other Aspies vary to the degree to which they would say the same, but there’s a tendency toward all of this in us that I believe is shared.

I remember with what joy of recognition I responded to a question on one of the extensive diagnostic inventories I took during my medical diagnosis for autism. It asked something about whether I was sometimes uncomfortable with having arms because I didn’t know how to position them or what to do with them. I had never told that to anyone and couldn’t believe anyone could imagine the same enough to ask another if that were the case.

One artist who does express this sense of bodily estrangement is David Byrne, also a self-described Aspie. If you are interested in this, read his lyrics to “Glass, Concrete, and Stone.” Here’s a taste:

Skin that covers me from head to toe
Except a couple tiny holes and openings
Where the city’s blowin’ in and out
And this is what it’s all about, delightfully

Everything’s possible when you’re an animal
Not inconceivable, how things can change, I know

‪#‎aspergers‬ ‪#‎autism‬ ‪#‎genderdysphoria‬

They’ll Slap a Label on Anything: On Teachers’ Responses to Autism in the Mainstream Classroom

I recently attended a conference for teachers in my field. Walking to a session with a teacher I’d just met, we were talking about some of the common difficulties in the classroom. She mentioned teaching to special needs students in the mainstream classroom and began to elaborate. There are so many kids diagnosed with ADHD these days, she said. And then there’s autism. There’s more kids they say are autistic now. I don’t even know what that means. They’ll slap a label on anything.

She did not know that she was talking with an autistic who has a freshman son in high school also diagnosed with autism. I did not enlighten her. I gave her some information about recent research that suggests there aren’t more autistics but more people who would have received other disability diagnoses being placed on a broader spectrum (see, for example, here with a popular summary in context here). This is, I explained, in an effort to refine our clinical definitions and associated interventions, so that we can describe developmental conditions more accurately and provide better help to those who have them. She didn’t respond, and we had arrived at our destination, so I didn’t know whether this was having much effect. I hope she will reflect on it later.

This teacher was obviously someone who was investing in her own professional learning by attending the conference, and she seemed well meaning. However, she is also a veteran teacher who must have had many autistic students in her classroom over the years. I have to wonder how much harm she has done by dismissing their diagnoses as a fad. And I had to reflect that maybe her discomfort wasn’t in accommodating ADHD or autistic students so much as being asked to adapt her approach in the classroom to individual students. The best teachers I’ve know have always done that as a matter of course, as much as possible and practical.

Over the years, in helping with my son’s educational progress, I’ve only met one teacher who explicitly rejected autism as a valid diagnosis: his fifth grade teacher, Mrs. R. Although she didn’t ever tell us so directly, it became apparent that she felt he was some kind of repugnant, anti-social creature. His abnormal social behaviors disgusted her. She called in the school psychologist to assess him, and convinced her that he was also anti-social. Neither of their descriptions of our son matched our understanding of him or that of other teachers from his earliest years to the present. I understood this fifth-grade teacher was highly socially conventional. When our son did not internalize or follow social cues, she became alarmed. He would get up during work and pace across the room once or twice before resuming his labors. If someone bumped into him by accident, he reacted with upset. Instead of interpreting his behavior as an absence of social awareness, or as a need to deal with sensory issues, she interpreted his behavior as deviance and defiance. Our mild, cooperative, quirky, gentle, funny child is neither of these. Once we explained this to the principal, who knew our son better, she intervened with the teacher, and the rest of the school year went better. It didn’t help that this teacher’s son was in the same grade and same band class as our son, and had bullied him from the first day of the school year. I could not help but assume that her child had internalized her rigid adherence to certain social norms.

Having taught college for twenty years, my heart goes out to teachers. Teachers in public schools teach too many classes filled with too many students. We can’t expect them to understand every diagnosis their students have or to be able to adapt their teaching style, method, or materials to every student difference in the regular classroom. I’ve been impressed over the years with the commitment and care of our son’s teachers. They have all done their best in difficult circumstances, even the fifth-grade teacher who misunderstood our son. She was trying to get him help for what she saw as a disturbing deviation from the norm, and she was trying to create a positive classroom atmosphere for her other students. As our son’s advocate, I had to press for a different response and I had to seek to educate an educator, which is never a comfortable position for a parent-advocate. I’ve had other moments when I’ve had to educate teachers about autism. Despite their experience with many children on the spectrum over the years, even the most well-meaning teachers often haven’t had time to focus or specialize in kids on the spectrum. They don’t understand it from the inside, in depth, although they are sometimes sure they get it. Their surety about their knowledge of autism can get in the way of working with individual kids on the spectrum even when they do accept autism as a valid diagnosis.

In the eighth grade, with the advent of Common Core State Standards in our state, our son’s math teacher became committed to collaborative learning in general and to cooperative learning groups in particular. Mrs. C became so committed that she designed her classroom around learning groups every day, all day, for two math periods each day. Individual desks were replaced with group tables. The teacher walked the room the whole period, but attempted only to facilitate as needed; the kids ran the show.

Cooperative learning groups are the kind most often recommended for kids on the spectrum when they do work together. They feature structured roles, with each student assigned a different part to play, and specific goals. This helps kids on the spectrum know what is expected of them socially and provides some scaffolding for interacting with peers. However, the amount of social interaction was far too much for our son. He had no time for working quietly on his own, no time away from social demands, and little support for interpersonal conflicts that arose in his groups. When the teacher was called over to help resolve these, she would assure students they could work it out on their own. The kinds of interpersonal conflicts my son encountered are typical of group work among students in the eighth grade: other students who won’t stay focused on work, who are sure they are right and the rest of the group is wrong, who are in a bad mood that day, and so on. Among the range of social deficits kids on the spectrum have, conflict resolution is one of the most prevalent and the likeliest to produce significant stress. The teacher attempted to help our son by switching up his groups and eventually allowing him to have a friend in his group. None of these solutions, though reasonable, were sufficient long term, because the interaction was unceasing and intensive. He was encountering increased group work in other classes as well as part of the Common Core approach, which added to his overwhelm, but math class was the most relentless.

Two-thirds of the way through the school year, our gifted, motivated son became so distraught that he began to exhibit school refusal behavior. He had fantasies about getting up and walking out of the classroom and of leaving the school and refusing to come back. This “wandering” behavior is typical of autistics, especially those from their tweens through early adulthood. It is a maladaptive response to stress that can endanger the individual, but it is a response that helps the autistic, who often has difficulty identifying or describing emotions in the moment, to distance him or herself from real ongoing harm. Our son is a homebody and anything but a risk-taker. I understood his talking about this as a serious symptom of something going very wrong. He was becoming increasingly depressed from having to go back to school each day and was desperate to escape. If he and I had not had such a close connection, he might have just done it instead of telling me about it.

Mrs. C was not only a veteran teacher but also a highly accomplished one. She was a master teacher. She was also certain that collaborative learning was the best learning method for all students and that she understood what students on the spectrum needed. She herself, she said, had autistic traits, and she had a nephew on the spectrum. Yet, what she was doing in her classroom was harmful or our son, and she could neither see it nor respond to it appropriately. We were clear all along that we wanted our son to be challenged. However, challenge also needs to come with reasonable accommodations and supports. These accommodations and supports sometimes fall away as the child develops, and sometimes need to be added as the learning environment and expectations change. Educators must always remain open to learning about the nuances of disabilities in learning, and especially to assessing how new methods that benefit most students may introduce new challenges for some.

In the case of our son’s math class, we had to call a new 504 meeting and adjust his plan so that he has the ability to opt out of any group work. I brought a quantity of research about group learning and autism (it is not a recommended default method and needs to be handled with awareness and care). His math teacher fought this bitterly, and even later, following the new plan, pressed him passive aggressively in the classroom to continue group work. We asked the principal to intervene, and she did, asking the teacher to leave our son to his individual work when he chose that. When the pressure was off, he often chose on his own to participate in group work. Being able to withdraw when absolutely necessary saved the school year for him. I have come across Mrs. C since, as recently as the homecoming parade. She refused to look at me. I suspect she feels we seized control of her classroom (at least one chair of it) and overrode her professional expertise (albeit in this single matter). I am certain we saved our son from further harm. He has told us if we had not intervened on his behalf, his trust in us would have been undermined, and I believe him.

The best teachers our son has worked with over the years have been those who accept a range of differences among their students, even when they don’t have a label for these differences or receive notice of a recommended intervention to which they are asked to adhere. From our son’s earliest grades in school, he has had teachers who recognized when he was about to have a meltdown and practiced a brushing technique to sooth him, or who saw he needed to sit near the front of the room away from social distractions, or who learned that he liked to share information with others and gave him an ability to present what he knew while excusing him from the stress of wearing a costume or talking about his feelings. These teachers seem always to find the ability in our son, to find ways to elicit that while also supporting his discomfort with group expressions or personal ones. They have understood that being uncomfortable or unable is not defiance or deviance, but difference, and they have been willing to accept and work with that difference toward learning goals. These teachers have shown generosity and humanity in their practice, when they have known and understood how to work with the label and even when they haven’t. The label isn’t what really matters, anyway–it’s the teacher responding to each student according to his or her needs, being willing and able to assess, reflect, and adjust. These are teachers who do not mistake fairness with sameness, and who have developed the capacity and the patience to make a practical difference.