Not explaining autism

There are many attempts to define and explain autism out there. This may be hardest when it’s in a real-world context; “how do I explain autism to a judgmental parent on the playground?” or “how do I explain autism to my autistic child?”

The answer I’m arriving at over time is: I’m not going to explain it.

If I sense that people might wonder about my son in some context, I like saying something like: “he takes a while to warm up to strangers,” or “he needs a break.”  Or saying nothing at all.

I dislike invoking “autism as explanation”: “I’m not a bad parent, he just has autism” / “my son isn’t a bad kid, just autistic.” These statements internalize the ideology that difference isn’t OK unless psychiatry says it is, and they accept that others are “allowed” to judge us. My view is that it’s just fine to behave differently (in a way that’s harmless to others), and this requires no explanation or excuse. If a person behaves differently but meets no DSM criteria, that’s fine too.

Rather than describing some general label like “autism,” why not describe the person? If a child acts differently on the playground, say “he likes to do that sometimes.” That’s a fine explanation.

Unusual behavior is OK because the person is a person, not because the person has been labeled autistic by a clinical professional. We do not need a note from a doctor to be accepted. We do not need to justify ourselves to nosy, judgmental people.

I understand the pressure of judgment, and the fear of being considered a “bad mom” (moms are judged much more harshly than dads). It’s hard to cope with this.

What about explaining autism to your child? I haven’t had to navigate this one yet. But I think I want to say something like, “autism is what some people call people like us.” And then explain “like us” with lots of strengths included. I would focus the explanation on how schools and others need to put people in boxes, and how they are wrong to do so.

Autism is not a fact out there in the world; it’s a framing and a way of thinking. As always, that doesn’t mean the word “autism” is meaningless, nor does it mean that the traits and behaviors we call “autism” are imaginary. It does mean that given the facts we call autism today, we could group them differently, we could talk about them differently, and we could act on them differently. The meaning, framing, and actions around autism have changed from decade to decade over the last century. Skepticism is warranted, and I would embed that skepticism in what I tell my son.

So, I guess I am explaining autism; but not as a fact. I want to explain it as an ideology, a bureaucratic convenience, an externally-imposed way of thinking that I don’t necessarily care to internalize. I want to keep some anthropological distance from the culture I’m describing.

It isn’t a secret or somehow shameful that the word “autistic” might be applied to my son or to me. I’m fine talking about it (in person though; as you can see I keep it semi-anonymous online). The concern here is that I don’t endorse the meanings and implications baked in to the word “autism” as commonly used. It’s a matter of accuracy, an issue of clarifying what “autism” means to me vs. what it means to others.

Some pedantic accuracy

If forced to “explain autism,” I’d have to adjust the usual words quite a bit. Here’s an example from wikihow:

Autism is a developmental disorder that generally leads to differences in communication and social skills. It is a neurological difference that presents significant difficulties, but also blessings.

How many mistakes are in here?

  1. “disorder” is singular but should be plural
  2. “disorder” should be “condition” to remove value judgment
  3. “leads to” implies that autism is an underlying explanation for differences, when in fact it’s only a description of differences with nothing to say about explanation or cause
  4. “neurological” is a false distinction (non-autistic people are also “neurobiological”)
  5. “significant difficulties” may or may not be true for a particular person; autism diagnosis currently waffles on whether autism is an immutable trait or a functional impairment, especially for preschoolers
  6. “also blessings” may or may not be true for a particular person

So yeah, I don’t like that definition. I could nitpick the rest of the wikihow article too but you get the idea. Most discussion of “autism” internalizes and takes for granted a pile of assumptions that I can’t get on board with.

Let’s look at another article on The Mighty about a parent explaining autism to a child.

I love you so much and am so very proud of you. You are smart and good and funny. Autism just explains why sometimes things feel difficult for you, why you might get so frustrated, and why you have an extra teacher come help you at school.

“But autism not only causes you some frustrations, it also makes you unique. It helps you have an amazing memory. Even when you were very little I could read a book to you and you would have the whole thing memorized after just hearing it once.

Talking to my son about this is a hard problem, and as I said I don’t quite know how to have this conversation yet.

But the part of that article that jumps out at me is the belief that autism explains anything. It’s central to this text: “explains why,” “causes you some frustrations,” “helps you have an amazing memory,” etc. I can’t agree. Autism explains nothing. It’s not an appendage. It is not an outside force operating upon anyone. It is a description or classification of people along a certain dimension; it is a shorthand for a checklist of observed traits and behaviors. There’s no difference, other than brevity, between saying “has autism” and listing the specific differences that make up the definition of autism.

If a parent worries about a child’s differences, and they go to a clinician for diagnosis, they have not learned “the differences are because of autism,” they have learned “the differences are considered autism.” The first statement is a fact about an autistic person; the second statement is a fact about clinical and educational institutions and ideology. As parents, if we know our child well already, then diagnosis tells us nothing about our child — but it tells us volumes about the world our child lives in.

I keep writing about this theme on this blog. A while back I argued that we should redirect anger about overdiagnosis to bureaucracies, away from parents and clinicians. Recently I argued that schools reframe their own one-size-fits-all limitations into medicalized diagnosis of individual children.

Not afraid to use the label

Labels have practical value. (A nice little summary of pros and cons of labels can be found in table 1 of “Ten questions about terminology for children with unexplained language problems”.) I have no problem with using “autism” to get things done within institutions, whether schools or insurance companies. But I’m eager to compartmentalize this use of “autism” and keep my own understanding separate.

Autism as identity

I appreciate that some would take the term back, and convert it from medical diagnosis to Autistic identity. I respect that. I often feel that this doesn’t go far enough. For Autistic to work as an identity, medical authority over the word may need to be abandoned.

I can’t explain autism

For me, autism is an anthropological or sociological problem: why did the world create the idea “autism” and apply it to people like my son and I? I’m trying to understand that.

In most heated discussions about autism, I feel on the sidelines; as if both sides are accepting some facts that I find mysterious. Autistic people aren’t the puzzle pieces. The mystery lies with the social phenomenon of “autism,” and all the ways we talk about it.

Autism isn’t mine to explain. It’s someone else’s formulation — and often, it’s a formulation I don’t think I can explain and justify.

Schools are disordered, and they blame our kids

As many see it, disability is a contextual interaction between a person and their environment, rather than an innate property of an individual person.

For many disabled children, it’s time to point fingers at one particular context: schools. It’s popular among politicians to talk about “failing schools” and blah blah blah; but my criticism will be different.

Look at this article about ADHD, “Lay off my daughter’s ADHD,” in which a mother describes the challenges her daughter experienced. These very real struggles were all about school. Literally all — school was the problem, period.

(Yet the author of that article never quite blames the school. Perhaps it’s because school has been the same for long enough — about a century — that we’ve lost the ability to imagine how it could be different.)

Autism parent support groups and forums are full of school issues. There are people on the autism spectrum who struggle with activities of daily living, and those struggles can span home and school. But many kids struggle most at school; at home, they and their families have found ways of living together that work for everyone. The school context creates disability.

According to the Department of Education, 13% of public-school-enrolled children received services under IDEA in 2012. This excludes the 3% of school-age children who are homeschooled, and most likely excludes a lot of children who could use services but are denied them, or who are given medication instead.

Not all disabilities in a school context are “labeled”; we had a server at a restaurant recently who told us about her son’s difficulties in kindergarten. He sounded like the opposite of my son and I — artistic, creative, sensitive, and simply not ready to learn to read yet. There’s most likely no label for that; her son is a square-peg kid whose strengths and rate of development don’t match the average, and he’s having a hard time.

Add up 13% receiving special education, plus homeschoolers, plus those who get medication due to school problems, plus those who are struggling but no label or medication “fits,” and you have a lot of kids. This isn’t 1% or 5%. It’s unclear exactly how many kids, but it’s an unacceptable number.

Are these school troubles inherent in the idea of school — are all these children learning disabled, or are they school-as-we-happen-to-implement-it disabled? For many kids I think it’s the latter, and I’ll try to make the case.

School: far less flexible than real life

There’s a viral Internet post “Rules Kids Won’t Learn In School” – I’d summarize this post as “real life sucks more than school, so kids should quit whining.”

Wow. Not my experience at all… post-school life has so many options. You can work for yourself, work mostly alone, work in a group, work in a big company, work at a desk or in the outdoors. If you don’t like your coworkers you can find new ones. You can make things with your hands or work with ideas or work in a caring profession. Some people are privileged to have more work options than others; but lots of different kinds of people do find work that suits them. Life after school offers diversity in social environment and physical environment. It values many different kinds of skills.

Historically, childhood was more flexible too. In a small community, children would interact with other kids of many different ages; and learn from many different adults. Until about a century ago, kids didn’t spend most of their time at school.

Today, typical schools are one-size-fits-all. Age-segregated classes of 15-30 work on reading and math on a rigid schedule, with frequent bells interrupting the day, and only brief breaks for recess and lunch. If a child has either talents or weaknesses in areas other than reading and math, those aren’t addressed.

Some will say “that’s not the school’s job”; but modern school takes over almost all of a child’s time and energy. When a school is inappropriate for a kid, that time and energy may be lost.

In my life, I’ve found a path where I work mostly alone, and I do a lot of communication in writing rather than in person or even on the phone. That’s how I can be successful. We all have to find the niche that works for us. Once we get out of school, we have the freedom to do so.

Our family

If you’re new to this blog, let me tell you about my son. As a three-year-old he was very socially delayed (autistic) and very academically advanced (including precocious reading, also known as hyperlexia). At age five, he still fits that same general profile, though he’s caught up socially quite a bit.

He will be eligible for public kindergarten next year. The school experiences reported by other parents of similar kids are overwhelmingly negative. I’d like to be optimistic, but… there’s no real basis for optimism. Even if we ignore other families, my wife and I had pretty bad experiences in elementary school ourselves. We’d have to ignore our own experiences too. And our son has a lot in common with us; he fell close to the tree.

To be clear, I know my son could survive. He could figure it out eventually, and eventually it would be over. It’s just that the school proposes to spend 7 hours of his time every day doing things that make no sense for him to do. If you have a 5-year-old who reads like a 9-year-old but could use practice playing with other kids, how does it make sense to spend hours per day on reading but only 20 minutes on recess? It’s so far from appropriate, and no IEP could ever solve that.

Schools and autism

Why are schools hostile to autistic kids in particular?

  • strict age-segregation keeps kids from finding peers on a similar developmental level;
  • very little social time (in our community — 20 minutes of recess, even in kindergarten!);
  • academic work is often in groups, or something such as singing or chanting as a group;
  • large classes with new kids every year (classes are assigned randomly each year);
  • rules which interfere with setting up social events outside of school (no email list of all the parents, that sort of thing);
  • little or no curriculum around social and motor skills;
  • bullying seems to happen pretty often;
  • loud or crowded environments;
  • curriculum may be relatively set in ways that favor some learners over others (for example, mixing a lot of language into the math curriculum);
  • policies often forbid outside experts or therapists;
  • autism IEPs tend to be token accommodations necessary for survival, rather than the kind of thoughtful program that may be necessary for a kid to thrive.

Schools and strengths

Schools aren’t only unfriendly to disabilities; they’re often unable to build on strengths kids may have.

Programs such as art, music, and shop class have been reduced, in favor of a relentless emphasis on reading and math. While every child needs to know the basics of literacy, this won’t be where every child thrives, grows, and finds their niche. The “real world” after school ends isn’t a big reading and math test. It values many kinds of abilities. Kids in school aren’t getting that message.

We should not be asking kids to spend every weekday for 13 years remediating their weaknesses, crowding out opportunities to discover and work on their strengths.

Even for reading-and-math-oriented kids, schools can be a poor fit. Because of rigid curriculum, a kid who’s ahead on reading and math will have hours of their time wasted every day as they go through drills and tests below their level. If nothing else, this is a recipe for boredom and misbehavior. Token adjustments (such as gifted-program pullouts) don’t address the big picture for academically advanced kids, just as token IEPs for autism don’t address the big picture for autistic kids.

Side note: the problem cannot be dismissed as “overdiagnosis”

I wrote more about this in the past, but the point in “Lay off my daughter’s ADHD” holds. Diagnosis is the only alternative many parents have to solve a real problem (that school is inappropriate). The issue is not that we’re placing the diagnostic lines in the wrong places. The issue is a larger context that creates a need for diagnosis. When we talk about “overdiagnosis” we are blaming individual parents and professionals for doing it wrong, when we need to be blaming the situation they’re in. Parents and professionals are simply making the best of it.

It doesn’t have to be this way

Every child deserves an individualized education. It’s twisted and wrong to start with one-size-fits-all and then create a bureaucratic “Individualized Education Program” process for those kids who have the hardest time. It’s twisted and wrong to blame the kids for a school’s inflexibility. It’s terrible that we drive many kids to medications so they can get through the day.

Don’t assume that doing better would be cost-prohibitive. That’s a failure of imagination; our schools are quite expensive, but they don’t make individualization a priority. Many of their features are historical accidents. US public schools spend on average $12,608 per student per year.  (Not that it matters; even if it did cost more to do school properly, society should be willing to do what it takes.)

In a school system with a dozen or more classrooms per grade, why not make some of those classrooms different? Not every kid needs the same schedule and the same curriculum. One room could be more about reading, another could be more about social development. At the very least, allow teachers to do this themselves by giving them more professional autonomy. Schools and teachers need to be able to treat different kids differently.

Different classrooms are allowed under IDEA of course, but only for kids with an IEP, and the law sets up a preference that kids should be mainstreamed (returned to the one-size-fits-all classrooms). When I say “different classrooms” I don’t mean places for kids who can’t possibly be mainstreamed; I mean diversifying the mainstream classrooms.

Politicians on both sides of the aisle seem to have the opposite prescription. In the politicians’ view, we allow too much autonomy and too much diversity, and don’t push hard enough to force all the square pegs into the same round hole. According to them, we need to have a standard curriculum, a bunch of rules on every level (federal, state, and local), standardized tests, standardized everything. Our heroic teachers make the best of the situation, but the situation is bad.

This isn’t what childhood should be about. It isn’t equitable, it isn’t humane, and it isn’t reasonable. I wish we could use our children’s time more wisely — every kid deserves that, not only those with the ability to homeschool or buy a private education.

Autism, Feminism, and Shy Nerdy Men

David Finch writes about autism as it affected his marriage in his book, Journal of Best Practices. This one was tough to read; David’s relationship with his wife was far from a storybook one. He was a socially awkward man with ugly beliefs about gender, which he had to adjust to make his marriage work.  It works out OK for David and Kristen, reminding me of this note from another wife to her autistic husband. The “autism” label allows David to forgive, change, and “normalize” himself; and allows Kristen to forgive him as well.

You can find a short essay version of their story here and even a few articles from Kristen on the book’s website.

I read David’s book over the holidays, and then encountered an interesting Internet uproar started by MIT professor Scott Aaronson about the intersection between “shy nerdy men” and feminism. Here’s a summary from the Chronicle of Higher Education,  but you might read Scott’s follow-up, Laurie Penny’s article, and this response from Scott Alexander (Scott Alexander is a different Scott from Aaronson). For an Internet discussion of a controversial topic, these posts were much more thoughtful and interesting than usual.

None of those links mention autism specifically — except to note that it’s often thrown as an insult at “shy nerdy men” — but Scott Alexander links to this short post from his girlfriend where she makes the connection.

Are “shy nerdy men” sometimes, often, or almost always autistic? I don’t know.

Do autistic men and boys really tend to become angry at women more often than other men and boys? I suspect part of the answer is that they can be relatively unsubtle and clumsy about it when they do, but again I don’t know.

As Laurie Penny points out, there are shy nerdy women, too. As many have suggested, the autism stereotype (and therefore autism diagnosis) may be biased toward men. To what extent, I don’t know.

Here’s what I believe, though.  As I argued at more length earlier, there’s something harmful at work whenever we need the autism label to forgive ourselves and one another. And as the Scott Aaronson conversation uncovers, there’s something harmful about trying to establish who among us suffers the most. A working model of compassion, for self or others, has few conditions on compassion; it doesn’t start from a question about whether we’ve suffered enough yet.

Parenting First, Autism Parenting Second

It’s common in the autism community to say (in effect) “because of autism, you have to do parenting this way.” This medicalizes the parent-child relationship; it converts the parent into a therapist, and risks looking at the child as “autism” rather than as a person.

I believe that most parenting decisions hinge on individual traits of family members, on context, and on one’s values. One’s exact approach may have to adapt to autistic traits; but other factors matter much more than anything we can assume from the autism label.

The breadth of parenting approaches

Parents are very different from one another. Here are some examples:

Parenting approach tends to be deeply entangled in cultural and religious background. A family’s daily life, and family members’ senses of self, arise in part from decisions about parenting.

It’s very common to see heated discussions of parenting approach on the internet (nothing to do with autism – I mean general parenting discussion).

People are very quick to judge others.

I expect most families have a reality that’s quite a bit more nuanced than these philosophical debates.

All of the parenting approaches in my list above, and many others, can be adapted to an autistic child. The values embedded in these approaches can still be expressed.

Many general parenting debates mirror debates in the autism community. For example, Alfie Kohn argues that typical families and schools today overuse extrinsic motivation.

The importance of context

In our rush to judge, we often forget the importance of context.

Parenting is a long gradual adjustment to developmental level; as a child ages, we expect more of them. Parents must continually adapt their expectations and approaches. If we see a parent we don’t know interacting with a child we don’t know, we might guess at developmental level based on the child’s age, but we could be quite wrong; as anyone acquainted with autism will realize.

Parenting has everything to do with context. If you see a parent buy their child candy, was that the only candy this month, or does their child live on candy? Most likely somewhere in between. But you don’t know.  If you see a parent react to misbehavior in a certain way, what preceded the misbehavior? What rules does the child know, what have they been asked to do? You don’t know.

What does a certain child consider to be a reward or a punishment? You don’t even know that, if you’re watching a parent-child pair. My son was staying up yesterday night doing a math workbook when he was supposed to be sleeping. Other parents might assign math workbook time as a punishment. Who knows.

Children respond to different styles

Many have made the observation that different kids seem to need something different from parents. One child might find rules chafing, and revolt against them vigorously in a way that makes everyone miserable. Another child might find it anxiety-inducing to lack clear guidance, and be much happier with a schedule and instructions to “do this, then do that.”

As parents we may often need to suppress our own vision of the kind of parent we’d like to be, and replace it with a vision of the kind of parent we’ve discovered that our child needs.

The parenting style that worked so well for one parent with their child, may be entirely inappropriate and even disastrous for another parent with another child.

Perhaps it’s a mistake to be too ideological about parenting, when ideology can blind us to the particulars of the children we have.

Families have different needs

Many (probably most) parents choose a few lines in the sand, where some rule of the household has to be followed or the family just won’t function. For some it might be keeping messes cleaned up, for others it might be that everyone gets enough sleep, for others it might be a period of quiet time after school, for others it might be eating dinner together, for another it might be going to church or using respectful language.

These traditions vary a lot across families, and they depend on individual values and temperaments. Like making a marriage work, to make a whole family work involves compromise, finding the place where all the people involved can coexist. There’s no “right way” to navigate these issues; it depends on who’s involved.

Keeping the focus on family

It’s harmful for any of us to tell parents how to parent, based purely on “autism,” with no knowledge of their specific family or specific child or specific cultural background.

Many autism therapy programs include a valuable parent training component, and parents do need and appreciate hearing experiences of autism, from autistic people, from other parents, and from autistic parents. I’ve found parent coaching incredibly helpful; and many parents say their “autism parenting” coaching helped them quite a bit with their non-autistic kids too.

But in these contexts, we have to draw careful lines. There’s a line between helpful advice and “back-seat parenting.” There’s a line between providing information and dictating our own values to other people.

I’ve seen both therapists and autism community members step over these lines. I’ve also seen parents violate their own lines, searching for and using someone else’s autism-related advice when they should be making a decision based on their values.

Most importantly, there’s a human, everyday parent-child relationship. There’s a family, and happy families find quirky and distinctive ways to make the family work for all the family members, even if it looks a little strange from the outside.

 

Autism as a “neurobiological” condition

Humans are neurobiological creatures. We are “made out of meat” as Terry Bisson so memorably put it. Our moods and cognitive capabilities have everything to do with hunger, fatigue, headaches, sore backs, hormones, and other influences outside the brain; not to mention the many biases inherent in our how our brains work.

Yet we often say that autism, depression, ADHD, and other diagnoses are neurological or neurobiological. When we use this word, what are we distinguishing these conditions from?

What is an example of a non-neurobiological mental difference, personality trait, or even learned idea or learned behavior? I can’t think of one. The word has no sensible opposite in this context.

When you hear someone say “autism is a neurobiological disorder” they’re sometimes saying the autistic person “can’t help it” and needs to be cut some slack. People want to switch from judgment to empathy, a noble goal.

But with this word “neuro(bio)logical” we’re implying that its opposite exists… that non-autistic minds might be non-neurobiological, or perhaps that the autistic mind has an outside or uncontrollable force operating upon it. We’re implying that autism (neurobiological) is something separate from the (non-neurobiological) self.

This is dehumanizing at worst, and misleading at best. It’s both immoral and impractical.

When we say someone has a “neurobiological” difference, and therefore should be cut some slack, are we saying they are meat-automata lacking some element of free will which other people have?

As is so often the case, we might correct how we think about autism by finding a new habit of thought which leads us to right action by recognizing the common humanity (sameness, rather than otherness) of an autistic person.

What does that look like? From a practical perspective, many wise teachers from Jesus to Thich Nhat Hanh have already shown us how to forgive and empathize, without resorting to psychiatric diagnosis.

I won’t try to restate the words of these teachers — please learn from them directly! — but I hope to convince you to question the “neurobiological excuse” model in your relationships, and urge you to look elsewhere, wherever that may be.

Forgiving ourselves without psychiatric approval

Many accounts of adult autism diagnosis describe a feeling of relief. People say they felt terrible about themselves.  The autism diagnosis gave them an explanation, and permission to shift blame to neurobiology. They could finally forgive themselves.

But they couldn’t forgive themselves before. They required a medical excuse before it was OK to be the person that they are. While it’s wonderful that diagnosis was helpful, it’s horrible that the help was needed.

DSM diagnoses aren’t even intended to be explanations; they’re intended to be descriptions. An autism diagnosis means “you are like other Autistic people,” it does not mean “we know why Autistic people are like that.”

If your flaws aren’t found in the DSM, must you hate yourself?

Let’s find a better way of thinking about relationships

In a touching letter to her husband, an anonymous wife describes how her feelings for her husband changed when he was diagnosed with autism. She found his behavior saddening and frustrating. She felt he wasn’t making an effort. With the autism diagnosis, this changed; she reframed how she thought about her husband and was able to forgive him.

For me, a workable model for living with others doesn’t fit the “before” or the “after” in this letter.

Before diagnosis, it was not realistic to expect a spouse to change dramatically; people do not, as a rule, change dramatically. It doesn’t matter whether there’s a DSM category for the way someone is; they are still that way.

After diagnosis, if these spouses weren’t a good match, they still are not (whether or not it’s anyone’s “fault”). If forgiveness was the only missing element, then wonderful! But again, why the need for diagnosis to forgive?

What’s needed is a model which works both before and after; which allows us to empathize and forgive, and to recognize our own needs, and to expect others to be responsible for their actions; and which allows those things without reference to psychiatric diagnosis, simply recognizing that we all are who we are.

The same need for a better model arises in parent-child relationships.

A related conversation: sexual orientation

There’s a parallel discussion about sexual orientation. Can someone change their sexual orientation and become “ex-gay”? Reasonable people don’t think so. Does this mean sexual orientation is neurobiological? Does it mean it’s genetic? Does it mean it’s learned at an early age? Does it matter?

When we debate “choice” in sexual orientation, we’re already framing the discussion in a dehumanizing way. If it’s not a choice, then someone can claim that it’s a disorder, that it would be appropriately “cured” or eliminated through eugenics. If it is a choice, then someone can claim that it’s OK to discriminate and persecute, because people can “help it.”

For me the human perspective is that it doesn’t matter whether it’s a choice. People experience sexual orientation as a core element of their identity; it’s clear that attacking someone’s sexual orientation harms that person. We should not go around harming people without a good reason, and as so many courts have eloquently explained in same-sex marriage cases, no good reason exists here.

We cannot be humane toward someone if our attitude is that they need a neurobiological excuse before we can accept them.

Parenting and education are not criminal justice

Often we describe children’s behavior and our response to it using a “justice” metaphor. We know we’re using this metaphor when we talk about whether a behavior was intentional, whether someone can help it, and what punishment would be fair or deserved.

Federal law in the United States encodes an “insanity defense” approach to educational discipline. When a child with a disability misbehaves, schools are required to determine whether the behavior was a “manifestation of their disability,” and the usual punishment may not apply if so.

I reject this whole framework. For me, the parenting ideal is to love, accept, teach and guide, not to judge. If a behavior is a significant problem and isn’t going to serve my son well, then I’ll discourage it (in the most developmentally-appropriate, empathetic, yet clear way I can come up with), and try to teach an alternative. It doesn’t matter whether he meant to do it or had malicious intent, what matters is whether he’s developmentally ready to practice and learn a better option.

Applying moral judgment to some skills but not others

We tend to view social incompetence in moral terms; if a child doesn’t know how to act in a social situation, we tend to say they are not only incompetent but naughty. We introduce the question of intent: did they “do it on purpose.” These questions don’t even arise if a child has trouble with reading or math. They should not arise for social skills, either.

Acceptance with allowance for growth

If you aren’t familiar with Carol Dweck‘s research on fixed vs. growth mindsets, check it out. It’s easy for all of us to underestimate our talents and our capacity for change. Whatever our capacity may be, we’ll be more likely to reach it if we see ourselves as able to grow — and less likely if we see ourselves as a collection of fixed attributes.

There’s a delicate balance, though. We might strive to forgive ourselves for being who we are today, without convincing ourselves that we must always be exactly that person. We don’t want to attempt the impossible (personally, I will never be a musician!), but we don’t want to give up too easily, either.

This stuff is hard.

An unhelpful question: “Is this caused by autism?”

Many parents and teachers find themselves asking whether a specific behavior is “part of autism” (and again, it’s encoded in United States law that schools must determine this).

It’s a trap — it has an intuitive appeal, but it’s wrong. We do need to cut people slack, including our kids, but let’s abandon “it’s autism so they aren’t responsible” as the reason.

Practical considerations:

  1. It’s false to say that autistics can’t help it, while everyone else can. Being human is a neurobiological phenomenon. It’s delusional to believe that anyone with any neurology walks around making conscious, rational decisions all day.
  2. It’s impossible to figure out what’s “caused by autism” and what isn’t — because autism isn’t separate from the person.
  3. Beware fundamental attribution error. We overestimate the effect of unique personal qualities (such as autism). We underestimate the importance of the situation and of universal human traits. We even do this to ourselves, adopting a fixed mindset and attributing our behavior and skills to our traits, when in fact we may be able to change more than we expect.
  4. Typical kids have tantrums and inflexibilities and repetitive behaviors, too. In the midst of a child’s temper tantrum, it’s tough to imagine a less-helpful question than “is this an autism tantrum or a regular tantrum?” Instead, always assume the child has good intent (they are a child!), and help them learn. Focus on how to help them thrive.
  5. When we try to guess what we can’t know, we become confusing, inconsistent parents; rather than offering stable, consistent, guidance, we add our own unpredictable guessing game to the situation.

Moral considerations:

  1. When we respond to a loved one with encouraging or discouraging actions, our purpose should not be justice and judgment; our purpose should be to help them, or help ourselves, or help us live better together.
  2. We risk viewing a person as a collection of symptoms and behaviors.
  3. The “I am a person and you are neurobiological” idea takes away a person’s humanity.

If you find yourself needing the “neurobiology” excuse to accept someone, ask why. Why do you need that excuse? Why can’t you accept them to begin with?

If I can’t ask “is this caused by autism?” what do I do?

Of course we need to recognize what people can do, and not hold them to an unrealistic standard. They may be limited by age and developmental level. They may be limited by their genetics. They may be limited by a physical disability. They may be limited by traumatic life experiences. Who knows?

When we cut people slack, we aren’t giving them a pass because “they can’t help it,” we’re giving them a pass because we’re realistic and understanding. Because we know everyone needs downtime, everyone needs autonomy, and nobody is perfect, We also know that we all are how we are.

But we shouldn’t give each other slack all the time. We can help each other grow by asking for more and allowing our loved ones to impress us with what they can do.

Parents are not a criminal justice system, nor are they God. If we reward good behavior and great accomplishments, and sometimes punish misbehavior, it’s not because our child “deserves” a reward or a punishment. It’s not (ideally) because we’re angry at them. Instead, it’s because we want to encourage our children to do things that will be good for them, and discourage them from harming themselves or others. This can be done clearly and non-negotiably when needed, but without passing judgment.

There’s also lots of room to leave our kids alone, and let them develop intrinsic motivation. Not everything needs a parental response.

When we respond to a loved one, we don’t need to look inside their head or guess at causes. If what they’re doing is dangerous or harmful, we need to communicate that to them clearly and consistently. If what they’re doing will be healthy and make them happy in the long run, we might encourage it, or we might let them find the intrinsic value in it. When we aren’t sure, or it isn’t an important issue, maybe we should stay out of it and accept them as they are.

Hard lines to draw, yes. But in a family, our job is acceptance, with occasional guidance. Our job is not to judge.

 

Autism and prediction

Via this post by John Elder Robison I just read a new paper “Autism as a disorder of prediction” (the full text is available but took me a while to find; click on the red Adobe Acrobat icon).

Statistical vs. Logical Prediction

The paper talks about a particular kind of prediction, which they call “Markov chain” (you predict Y after X, if Y is statistically common after X). Markov chains are often used in computer programs to generate nonsense text that matches a “genre.” A Markov gibberish-generator analyzes how words tend to group together in a bunch of sample text, then generates text with those same statistical probabilities. The result is humorous nonsense that sounds like a parody of the genre used to “train” the gibberish-generator.

In the fields of linguistic anthropology and sociolinguistics, these statistical properties of text are thought of as largely-unconscious ways to convey meaning, often social meaning. For example, the way we talk (word choice, pronunciation, gestures, sentence length, etc.) is often enough to let other people place us socially: race, class, gender, even occupation. This social meaning may have nothing to do with the actual “denotational content” (dictionary definition) of what we’re saying; it’s a sort of overlay. And it’s based on statistical probability (stereotype, in essence) rather than logic. The same mechanisms that define a literary genre such as the “romance novel” also define genres of everyday speech and genres of identity.

A famous on-purpose example of Markov genre parody was Alan Sokal’s hoax in the journal Social Text. A famous not-on-purpose example is anything written by Thomas Friedman. These are texts that appear coherent and match a genre, but their logical content (i.e. what the words mean in a dictionary sense) makes no sense.

I’ve also known several people in real life who were like this, very charismatic, sounded very convincing in their social role, successful even, but the words meant very little beyond “I am talking like a CEO” or “I am talking like a minister.” These people were all-genre, no-content. Finally there’s an interesting condition called Williams Syndrome which leads to intellectual disability paired with the ability to convincingly inhabit social roles.

The point here is that the ability to make statistical language chains does appear  to be decoupled in some sense from the ability to think logically.

With that background, let’s get back to the paper.

Problem: Attempted unified account of autism

Let’s note that the paper is on a fool’s errand trying to unify and explain all autism, and these authors should take Lynn Waterhouse’s advice on that front .  The paper would still be interesting if it led to an account of some conditions underlying autism, and that should be our default interpretation of it.

Problem: Assumption that if it correlates with autism, it must be bad

And let’s note that the paper takes whatever thing correlates with autism and assumes it must be a bad thing, which is simply unscientific as usual. Statistical Markov-style prediction creates many of the known cognitive biases, not to mention racism, sexism, and a lot of nonsensical speaking and writing. Unquestionably, this kind of thinking is also necessary for humans to get things done — it isn’t effective to think everything out explicitly all the time — but there’s a reason we have the ability to both “pattern match” and also think things through step-by-step.

Possible meaning and future direction: intellect and instinct again

In the past I listed 20+ word pairs used in everyday language and various academic fields to refer to the distinction between “intellect” and “instinct.” Here’s the post listing those and talking about how I feel it relates to autism.

To me this prediction paper is getting at the same dichotomy again, this time calling “instinct” “Markov prediction.”

Generations of academics from all kinds of fields have wrestled with this distinction. The theoretical framework is weak; what does this distinction really mean? What does it mean biologically? What does it mean in everyday experience? At the same time, there’s a lot of data and previous work that could be learned from. Sociolinguistics and linguistic anthropology have a lot to offer here, among other fields. There’s no need to start from scratch.

Rather than unifying autism, can we unify some of the past work on this intellect vs. instinct dimension of human experience? Can we figure out if this is a real thing or just a folk theory? Can we decide on ways to measure this dimension?

I think there’s interesting work to be done, somewhere in the vicinity of this paper.

Alternative explanations for prediction failure

Before concluding that failure to Markov-predict is due to deficits in prediction ability (due to our unscientific bias against autism), here are two examples of alternative explanations we could also consider.

  1. Attention and interest.  That is, interest in instinctive prediction vs. a preference for other kinds of cognitive activity. For example, I typically feel pretty good (even superior) at pattern matching in areas of intellectual interest. John Elder Robison brings up the example of autistic kids playing a video game they’re really into.
  2. Interference from a “thinking slow” filter. Introspectively, I feel that step-by-step intellectual thinking builds on a “pattern matching” substrate; each “step” is a pattern match, and you learn to apply a sequence of pattern matches to get to a conclusion. The difference between this and a Markov chain is that you aren’t allowed to use “false” pattern matches (stereotypical associations or genre features), you can only use those that make sense on the literal/factual/denotational/logical level. This is an extra level of filtering which may hinder automatic, instinctive pattern matching. Framed this way, the “problem” is that someone is doing more on top of and beyond Markov prediction, rather than that their Markov-predictor is broken.

I don’t know if these are right; the point is, we’d consider them if we didn’t jump straight to “if it’s autism, it’s broken.”

Avoiding fuzzy thinking

This paper is a great example of how our biases (toward autism as a unified condition, and toward autism as an unqualified deficit) can cloud our insights.

If we open our minds to the possibility that we can understand some autism, and to the possibility that some traits may be both strengths and deficits, depending on context, we can explore a lot of ideas that we might otherwise miss.

To find the truth researchers must make things more complicated.

On normalization and social skills: my reaction to “The Kids Who Beat Autism”

I was a little surprised by reactions to a recent NYTimes article “The Kids Who Beat Autism”, such as Steven Kapp’s reaction (just an example, some other reactions were similar). I thought the NYTimes article was a mixed bag, and better than most newspaper coverage.

There are a lot of things here to talk about, but In particular I find there’s valuable nuance and gray area when we talk about learning useful skills vs. being forced to pass as normal. Perhaps it would be constructive to dig into some of that — so I’ll give it a try.

Background

I tend to be on the same page as ASAN and Thinking Person’s Guide to Autism much of the time. I believe myself, my son, and my father all met autism diagnostic criteria — at least as children, but with important traits continuing into adulthood for my father and I so far.

I was raised with unconditional support for and celebration of quirky traits. I do not believe there’s anything wrong with any of us which needs curing or fixing, and I believe in our family the “symptoms” of autism are one aspect of traits which also result in strengths. Here’s my attempt to informally describe what autism could be about for us.

As always I’m trying to figure out what all this autism chatter is supposed to mean for myself and family. We don’t feel broken and never have; but several professionals felt an autism diagnosis was “clear” in the moderate (not borderline) range for my son, and I see little difference between him and all accounts and memories of my own childhood. He’s quite possibly happier and more socially competent than I was. I had quite a rocky road through childhood.

For me right now, autism is a kind of externally-imposed bureaucratic label that I’m a bit ambivalent about, rather than something I identify strongly with. I find the science interesting when I can figure out how and whether it applies to my family.

Some personal thoughts on “passing” and learning social skills

There’s such a fuzzy and difficult-to-navigate line between learning skills and normalization, between getting through the day in a way that works and unhealthy pretense.

If someone knows a lot about autism, they might notice that I have no close personal friends, have an unusual nervous laugh, and rarely make eye contact. But I don’t think most people read those things as autism; I believe they perceive them as quirks, if they notice at all. And these things are not a big deal in most contexts.

I suppose I could explicitly present my traits under the heading of “autism,” but the thought hadn’t occurred to me until two years ago.  As an adult, I work in a professional field with lots of other people I now suspect would have been diagnosed as autistic when they were kids, using modern criteria. All of us grew up when verbal, can-go-to-school autism wasn’t known; Asperger’s Syndrome was only recently invented when we were kids. We could interpret the difference in autism prevalence now, vs. 30 years ago, as the number of undiagnosed 40-something adults — that’s a LOT of people.

Many people my age have “passed” their whole lives, and perhaps most still have no idea about autism or that it may apply to them. I didn’t until I had a son who went through the diagnostic process. We are “passing” without even knowing it! We’ve never had people explicitly trying to fix us or treat us, but still I’d guess almost all of us have “toned down” autistic traits relative to our younger selves.

When I was a kid, catching on to a few realities greatly decreased my daily misery. Realities such as: people don’t care to hear about my arcane interests at length; people have pointless conversations just to form social bonds, and like to have you express interest; throwing an angry fit is counterproductive and embarrassing; it does matter to others what clothes you wear; etc.

I figured this stuff out during high school, a good deal later than average, and largely because some people finally pointed it out. It was not naturally clear to me. My parents encouraged me for years to just be different and tell others to go to hell if they didn’t like it. Overall, I’m glad they did, but it was not without a price.

“I’ll just be myself and other people can go to hell” led to daily stress for me. The constant bullying and confusion was simply too much. Of course it’s a privilege that I can opt out, but as soon as I learned how to avoid the stuff that made others attack me, I did avoid it. And it was so much better that way. This wasn’t because of parental pressure, they encouraged me to be different; it was because of pressure from other kids.

For me as a kid, being “weird” was not some sort of conscious decision or self-expression, it was simply ignorance of and disinterest in the elements of “not weird.” The cost in misery was high, and I had no idea why people were so mean to me. I think it would have been great to wear less-unfashionable clothes and know how to have a boring small-talk conversation, a little sooner in life.

For me there was one lifelong negative effect of taking so long to understand social conventions: lack of close personal relationships. I had so many early failures and bad experiences in social interaction, that my adaptation was acceptance. I’m comfortable with myself and find that my family, and professional and casual acquaintances, are enough for me. It’s so much effort and anxiety to try to do more, and I just don’t need it.

But I don’t think this was how it had to go. I don’t think avoiding social interaction is “my true nature” so much as an adaptation to being bad at social interaction — a response to failure. Some traits that I had created a feedback loop.

From my experience, the message I’d have for my son is a little bit more nuanced than either “act normal” or “let your freak flag fly.” Something like “you can do and be what you want, with our unconditional support, but go into it with eyes open about how people will react” — and also “sometimes these strange socially-oriented people have a point, some of the stuff they do is fun in moderation, so don’t be afraid to go with the flow and try it sometimes.”

We’ve arranged for him to practice playing and social skills every day, because I think there’s a lot of value to learning this stuff sooner rather than later. Why go through years of misery before finally figuring it out? I didn’t enjoy that. It was hellish. It wasn’t a conscious decision, it was cluelessness, and a lack of options created by a lack of skills.

We can teach skills in a respectful way that’s about teaching a human being a skill that they can use, or we can teach the same skill in a harmful way that communicates “what is wrong with you, you need fixing.” So much of this is about attitude — teaching the same skill, using the same method, you can convey either respect or contempt for a person.

“Passing” and “acting normal” are complicated ideas. Surely it’s useful contextually to avoid awkward situations. I do recognize that some don’t have the luxury of passing. I do recognize that we should not require people to do it. But I also feel that, after many long years of bullying and confusion as a child, “acting normal” in various ways is a very useful skill for my mental health. I strongly prefer to keep the focus on my ideas and work rather than my personal traits.

Knowing what’s socially expected in a certain context need not be normalization. The difference is in attitude; are we going with the flow to avoid rocking the boat when it’s no big deal for us, or to achieve our own ends, or are we going with the flow in a way that’s too much to ask, that doesn’t work for us, because we’ve been shamed into it?

And as I noted, there are some ways I do not “act normal” — and that includes the often-cited eye contact. I can’t even explain why I don’t like eye contact, it just seems uncomfortable. Fortunately I’ve never had the experience of being told to fix this.

So I strongly respect and want to affirm the feelings of those who feel “acting as expected” has been harmful for them, and that they need supports.

At the same time, I think it’s pretty complicated in practice, for both autistic people and parents.

We need to help people navigate the complexity and nuance.

False dichotomies in autism parenting

Some experts on parenting advocate what they call authoritative parenting, which contrasts with authoritarian and indulgent parenting. Wikipedia has some info on this framework. The claim is that kids need structure, guidance, and rules, but in an environment of love and acceptance.

I often feel that debates about autism “treatment” are setting up two bad alternatives, where sensible people are going to find a better, middle path. For example in this BBC documentary about ABA, there are two kids. One kid I believe is around 12 and only eats liquid shakes. Every day they offer him solid food as an option but without pushing or nudging in any way. He never tries it. Another kid is in preschool and only wants liquid foods. They sit him down and make him eat a hot dog, even if it makes him vomit. They show him a few weeks later happily eating the hot dog, but the way they got there was tough to watch.

Are those the only two options? I don’t think so. There are good options in between an extremely strict “because I said so” parent, and a parent who tells their preschooler “whatever you want to do honey, no rules here!”

Just as those extremes are wrong (in my opinion, of course) for non-autistic kids, they are probably wrong for autistic kids too.

Note that the difference between “authoritarian” and “authoritative” isn’t in what kids are asked to do, but in attitude — in how they are asked to do it.

I’ve lost track of how many things my son was afraid of doing or didn’t want to try, that he now loves to do and demands to do constantly. Part of parenting is nudging just the right amount — think of swim lessons, and how swimming teachers can be experts at slowly making kids more comfortable with the water. There’s a happy medium here, between pushing someone too far past their comfort zone, and never pushing them at all. Parenting is about this sort of balance.

It is very hard to know when learning skills and learning to participate in new activities crosses the line into being inauthentic or untrue to oneself. Especially when we’re talking about young kids.

This has nothing to do with autism, really. It’s just about parenting in general. (In most cases, by the way, we’d probably do well to talk about autism parenting, and autism education, instead of autism treatment.)

I’ve read more than one autism blog where a parent describes a swing from one extreme to the other — from “warrior parent” trying to fix their kid, to total acceptance and no guidance at all. I don’t appreciate those extremes, they both seem wrong to me.

Getting back to that New York Times article — can we tell from this article where these parents were, what approach they took? There are some clues, but overall I think it’s a little tough to know. Even if a parent tells us, what they say may not match what they do.

When we react to this sort of article by firing flames back and forth opposing the extremes, it isn’t helping most families. I guess it’s good to smack down the people who truly do go too far — there are abusive parents out there, even murderous ones, and plenty of evil institutions.

At the same time the average parent doesn’t learn anything from this clash of the extremes. They’ve already rejected the clearly-out-there options, and now need to wrestle with the reality in the middle.

As I meet other autism families in my community, a common issue is inadequate teaching of skills (through no fault of the parents, it’s an issue of access to resources). Kids without effective teaching can be naive clueless kids like I used to be, wondering why everybody’s so damn mean, and without access to any effective program to help them. Normalization doesn’t even arise. Because there aren’t resources to teach much at all, the issue of what to teach hasn’t even come to the top of the list.

Kudos and criticisms for the NY Times article

Here are some things I’d change about this article.

  1. The headline is terrible (autism as thing-to-be-combated).
  2. It is from a privileged perspective — several families who could afford, or at least manage to somehow pay for, intensive therapies out-of-pocket.
  3. It does not adequately explain the limitations of the “optimal outcome” studies.
  4. It does not adequately question the “single unified disease” account of autism (even though these optimal outcome studies are one bit of evidence against that account).
  5. It uses the language of disease, such as “recovery.”
  6. It could have more subjective reaction from the “optimal outcome” people who were interviewed; what are their struggles and successes? What advice do they have for others?
  7. I’d love to hear from a parent who didn’t go through a “warrior phase.” I’d identify with them more.

Here are some things I liked:

  1. It is appropriately dismissive of nonsense “biomed” “cures.”
  2. Autistic adults at least exist in the article (though they are not the focus).
  3. It presents the science that a kid can meet the diagnostic criteria at one point, even very clearly so, but not at another point. It is helpful to state that autism follows many different trajectories and we do not know how to put people in two crisp, clean buckets (or any number of crisp, clean buckets). There’s a very harmful popular view —usually accompanied by a belief in “misdiagnosis” —that autism can and should be only “low functioning” while “high functioning” should be separated or not diagnosed. This popular view results in “not like my child” opinions and “autism is just an exaggerated excuse” opinions and “high-functioning kids don’t need services” opinions and “the world is full of moochers taking our tax dollars” opinions, and other such junk opinions. The article pushes back more than average on this kind of thinking.
  4. It does present the neurodiversity perspective; though it’s presented in he-said she-said format without taking a strong stand, it is in there, and in most articles it is not there at all.
  5. It includes Catherine Lord’s caution against “getting to perfect” and advice not to “concentrate so much on that hope that you don’t see the child in front of you.”
  6. The closing realization from a parent that “He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him.”

Overall, I felt that the average person would come away with a more accurate view of autism after reading this than they had before. They would start to ask some of the harder questions. They would be exposed to ideas such as neurodiversity. It’s a lot better than the average newspaper article about autism, low as that bar is.

I believe our understanding of autism needs to become significantly more complicated (see this post about Lynn Waterhouse’s book. and some thoughts on “misdiagnosis”). This article felt like it went in that direction.

It’s a lot better for a parent to believe that “some kids struggle a lot less than others, for unknown reasons which may include lots of practicing skills” than to believe “I need to cure my kid using chelation and bleach.” Yes this article says “beat” and “recover,” but the closing paragraph is a mom saying that warrior attitude was a mistake.

As I read it, the article does not advocate the warrior approach; it is quite clear that 90% of kids will not “recover”, and that these “optimal outcomes” are largely unexplained (rather than because a parent did such-and-such).

I thought Ruth Padawer tried harder than most reporters do. I appreciated the effort.

Regarding “optimal outcome”

The big problem for me is the spin, via the words “recovery” and “optimal.” It is an interesting finding that the diagnostic criteria are imperfect and may no longer apply as people age. But,

  • we could say “no longer meets criteria” instead of “optimal”; just the facts, not the value judgment, please.
  • the word “recover” drags in the whole bogus metaphor “autism is like the flu” (as belabored on this blog in the past, that metaphor misleads in a host of ways).

Nonetheless, I find these studies helpful in understanding myself and understanding autism. I love to to see challenges to simplistic, fixed-mindset narratives.

Finding a better path

The options are not “normalization and cure” on one side, and “let a child do whatever they want and don’t teach them anything” on the other side. If we want to help parents, and their kids, we need to explain what those options are.

Effective social skills do involve a certain amount of behaving in ways that people expect. When does that become harmful normalization? Well, that’s a hard question. I’m not sure anyone in this discussion is answering it. But parents have to. Whether their kids are autistic or not.

I find my way as a parent based on my own childhood experiences, mostly, though I do my best to see how my son differs from me. This may or may not be right for my son; who knows. But it’s what I have to base things on, and at least my son and I have some important things in common. Many parents don’t have that connection. What should we tell those parents? Let’s give them more they can act on.