Why it matters whether autism is a trait or a unified condition

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I’ve written a lot about autism as a trait, contrasting this with a “single unified disorder” narrative.

To me, this is not a nitpick. It matters very much whether we think about autism as a “single disorder” kind of thing, or a “dimensional trait” kind of thing.

Take a popular media article from time.com that came up on Twitter today, about the “Intense World” theory of autism. It’s called “What if people with autism are actually hyperfunctional?” and a sample quote is:

Now, a new study published in the journal Frontiers in Neuroscience suggests that the brains of people with autism are actually hyperfunctional rather than stunted or impaired, and that if treated early in a very predictable environment, symptoms could diminish.

The article goes on to suggest that if autism has this etiology, it should significantly change treatment strategies.

This study is interesting, but it applies to only some autistic people. I don’t think it’s relevant to me or my son, for example.

Results that apply to only some people are still interesting! It isn’t necessary to overhype into a unified theory of autism. But there’s a practical consequence if we only apply a result to a subset of autistics, and that’s the need to figure out which people it applies to.  The autism diagnostic criteria don’t do that work for us.

If we apply a research discovery to the wrong people, then we might harm them by using the wrong approach to helping them.

This particular result, because it’s about being “hyperfunctional,” also continues the disability superpower trope, something that can be harmful by creating feelings such as these. When presenting this kind of “autism as a strength” idea, we have to be sensitive from a human perspective, thinking about autistics who may read about it and think “well, I don’t feel hyperfunctional” or “I don’t seem to have any special skills.” Here’s where always qualifying with the word “some,” some autistic people, can be a small but helpful gesture.

But most importantly — however an article like this one on time.com plays out in practice — it’s inaccurate in a way that deserves correction.

To see this, rewrite it with something we all agree is a dimensional trait, such as intellectual disability, and a single condition that causes that trait, such as Down Syndrome. We might write “What if people with intellectual disability actually have trisomy 21?” and we might talk about how we need to focus on low muscle tone, short stature, and congenital heart disease as central to the treatment of intellectually disabled people.

I think we can all agree that this would be more than oversimplified; it would be incorrect and lead us to flawed treatments. In cases of intellectual disability that are not trisomy 21, we would be badly mistaken to go looking for the characteristics that make up Down Syndrome.

If time.com made this mistake about intellectual disability, they would have to issue a correction. The reason they can mess this up with autism is that autism researchers are also still messing it up, and the mass media follows them. The most cutting-edge researchers are now talking about “the autisms” and so on, but lots of them haven’t caught up.

So whenever some poorly-designed study correlates stuff with autism, and the media reports this as a possible new unified theory of autism, it’s misinformation. Plain and simple. It’s no different from asserting that trisomy 21 is the unified theory of intellectual disability.

There are more known etiologies for intellectual disability than for autism, no doubt. But autism does have some known ones, and there’s no evidence that the remaining idiopathic cases of autism (or intellectual disability) will turn out to be from some unified cause. Most evidence seems to point the other way toward diverse causes.

Discovering trisomy 21 was still a big deal, still very interesting, even though it doesn’t explain all intellectual disability.

When we say “autism is due to intense world,” that’s a much stronger claim than “some autism is due to intense world,” because it requires us to not only prove intense world but also to disprove every one of the other zillion proposed theories of autism. When it comes down to it, quite a few of those theories could be true … for particular autistic people and not for others. To help each person, we need to understand what autism means for them, individually.

Good science and good medicine require us to be precise about our claims and our terminology.

 

Not explaining autism

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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

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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.

Parenting First, Autism Parenting Second

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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

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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

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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”

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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.

Book: “Rethinking Autism: Variation and Complexity”

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More and more researchers, autistics, parents, and professionals are questioning whether DSM categories, and Autism Spectrum Disorder in particular, hold up to scrutiny.

In Rethinking Autism: Variation and Complexity (2013), Lynn Waterhouse undertakes a comprehensive review of autism research to argue against autism as a single, unified disorder.

She argues that while we’ve had no success finding any single cause or unified understanding of autism, we do have plenty of data pointing us to an alternative research agenda focused on heterogeneity.

The book is an argument, not an opinion piece or political manifesto. It presents a pile of research findings, and makes a case for what they tell us.

Dr. Waterhouse goes beyond “the autisms” and argues that autism is not a disorder, or set of disorders. Rather, it’s a trait which may be produced by many different underlying conditions. Calling these conditions “autisms” would be like saying “flu is one of the fevers,” or referring to all fever-causing conditions as “the fevers.” In her words,

Given all the available evidence, however, the least speculative scientific position would not be the creation of autism subgroups or a creation of “the autisms.” The least-speculative and most phenomena-conserving position would be to view autism as two symptoms expressed in association with a wide range of genetic disorders, and a wide range of environmental causes.

She proposes that we diagnose symptoms, rather than a disorder:

The most simple and minimal solution would be to replace the DSM-5 diagnosis with an open set of symptoms that make no claims to be a disorder.

In this approach, we would diagnose “social impairment,” “intellectual disability,” “hyperactivity,” “repetitive behaviors,” “sensory processing difficulty,” and so forth separately. Some people would have both social impairment and repetitive behaviors (what’s now called autism), while others might have only one of the two. And many people might have other traits as well, which are not currently part of the autism criteria.

In fact, Dr. Waterhouse argues that most autistic people have some underlying condition which gives rise to both autistic traits and also other traits which are not part of the ASD criteria. These non-ASD traits are diverse; everything from ADHD to epilepsy to intellectual disability. (And some under-researched areas of strength.)

Why does it matter?

Because there is no unique unifying deficit, and because there is no evidence for causal specificity for autism, there is a clear detriment to maintaining the diagnostic category of autism spectrum disorder. The diagnosis misguides researchers, parents, professionals, and the public into the illusory belief that research will find a unifying deficit that would lead to a “cure” for the autism spectrum. Equally important, this illusion has driven the expenditure of an enormous amount of research effort in a continuing series of failed quests to unify autism.

Rethinking Autism will be too dense for many readers. Though Dr. Waterhouse makes an effort to define jargon (and overall writes clearly), there’s a lot of detail to wade through. The book also has an “academic book” price rather than a “popular book” price.

I don’t mean this as a criticism — we needed a thorough treatment of the topic — but I would love to see the same ideas in a more popularized format as well. For now, if you want a shorter version, you could read this blog post and hope I don’t mangle things too badly! I hope you will read the book yourself for the full argument and accompanying evidence.

This post

I’m sharing my notes after reading the book, starting with a summary of selected points, and continuing on to some of the personal reactions and ideas it left me with.

Indented quotations are from the book unless otherwise specified.

Three Arguments

Dr. Waterhouse summarizes her own book early on, so I’ll start with her summary of its three general arguments:

Argument 1, variation requires explanation:

… autism variation in etiology, brain deficits, behaviors, and life course is real and extensive and carries important information, therefore this variation should be explained rather than accepted, minimized, or ignored.

Argument 2, research must consider the full phenotype:

… diagnostic criteria for autism spectrum disorder have mistakenly excluded frequently-occurring symptoms of the autism phenotype as being outside the autism diagnosis. Intellectual disability, attention deficit/hyperactivity disorder symptoms, motor disorders, epilepsy, and, in DSM-5 developmental language disorder symptoms, have been excluded from the autism diagnostic phenotype. Excluding these symptoms from a diagnosis of autism has not helped us to understand the varied complex autism phenotypes, and has consequently hampered research discovery.

Argument 3, unified theories of autism are harmful:

… there are multiple causes for complex autism phenotypes, and understanding these causes will not be advanced by theories that propose a single unifying cause or feature for autism.

Does autism exist?

Of course the traits and people we currently classify as autistic are real. But perhaps there’s no out-there-in-the-world objective reason to draw a circle in the continuum of reality surrounding precisely those phenomena we currently call “autism.” Alternative circles may have more practical and explanatory power.

Dr. Waterhouse calls the cultural creation of autism reification; “the conversion of a theorized entity into something assumed and believed to be real.” We’ve moved from Kanner’s original 1943 theory of a unitary disorder, to a billion-dollar research agenda correlating stuff with the disorder, without stopping to prove the disorder exists.

In his foreword, Christopher Gillberg worries about misinterpretation of this argument, though he concurs with Dr. Waterhouse:

Having said this, I realize it may sound as though I do not “believe” in autism. To the contrary, I am acutely aware of the reality of autism; my endless flow of patients is convincing in itself. However, the fact is that we do not know what autism “is.” I have been in the field for forty years, and I can honestly say that I do not believe we are any closer now than twenty years ago to a real understanding of what it is about autism that makes experienced clinicians “certain” that it is autism regardless of whether operationalized criteria for the disorder are met or not.

Many routes to social impairment and RRBs

Dr. Waterhouse writes:

The first diagnostic symptom of autism, social interaction impairment, is likely to occur when any of the many brain systems that govern human social behavior are disrupted. These systems include the detection of biological motion, face recognition, emotion recognition, emotion experience and expression, a drive to bond with others, pleasure in human physical contact, ability to communicate, and other component social skills. …

The second autism symptom of restricted and repetitive behaviors and/or sensory abnormalities is likely to result from disruption of a variety of brain systems regulating motor planning, motor symptoms, sensory systems, executive functions, reward circuits, motor repetition, motor inhibition, and other symptom-component skills.

Social interaction involves virtually the entire brain, working in coordinated fashion. Therefore, many specific brain differences, and most general brain differences, could result in social interaction differences. There need not be anything in common amongst those differences — other than “they all affect social interaction.”

Many outcomes from single genetic risk factors

Eliding the book’s lengthy review of genetic risk factors into one conclusion:

Nearly all gene variants and chromosome duplications and deletions found for autism carry risk for other psychiatric and neurological disorders.

This is evidence that the currently-identified disorders do not draw lines in the proper places. We often say that someone has “comorbidities” with autism (such as ADHD or intellectual disability), when (often) it may be more accurate to say that they have a single condition with many effects.

Broad autism phenotype

Dr. Waterhouse reviews the research on “broad autism phenotype,” and concludes that it is as heterogeneous as autism itself:

What is clear from these findings is that researchers have not discovered any consistent pattern of traits for the broader autism phenotype, and that the great heterogeneity found for autism symptoms is true for symptoms of the broader autism phenotype.

Implications for genetic counseling

Many may have read that a family with one autistic child has a 10%-ish (depending on the study) chance of autism in a second child. However, Dr. Waterhouse points out,

All infant sibling studies exploring how likely a family is to have a second child with autism generate a single risk rate. However, that single rate is really the average of many different individual family risk rates.

To think about genetic risk clearly, researchers and prospective parents once again need to dive into heterogeneous detail.

For example, in a family like mine, where three generations (that I know of) all have similar traits, the simplest explanation for autism is that it’s inherited. But plenty of autism in other families appears to be related to prematurity, epilepsy, de novo mutation, and so on. Simple conclusion: in our family, the chance of autism in a second child will be well above average. But another possible conclusion: not all autism is the same, and in our family it has never been accompanied by intellectual disability or epilepsy. So those accompanying traits may be unlikely (or if they appear, they might be from a distinct cause, which could interact with inherited social impairment to create a more complex phenotype).

By understanding autism’s heterogeneity, genetic counselors might give better advice about autism inheritance in a particular family. Giving families the average chance of autism for a second child is misleading.

A research agenda around heterogeneity

Dr. Waterhouse writes:

Abandoning the diagnosis of autism as a disorder would free researchers to recognize and study the complete phenotype of children expressing neurodevelopmental social impairment.

Recognizing that many conditions cause autism, that most risk factors for autism also cause differences other than autism, and that individuals may have multiple conditions, might make research far more complicated than “correlate xyz with autism.” But it might also make research more meaningful and realistic.

Dr. Waterhouse argues that continued research around unifying features of autism requires progress on synthesis, but that “the hundreds of theories proposing a unifying feature for autism would not require synthesis if autism were no longer viewed as a single disorder.” She cites P.E. Meehl’s theory of “ad hockery” and argues that researchers have been inventing and rejecting a series of weakly-supported theories, rather than reconceptualizing the big picture.

Autism and gender

Rethinking Autism devotes some space to autism’s greater prevalence among males.

In the book’s argument, the male/female ratio will be a composite: an average made up of many “distinct male to female ratios each of which is determined by a specific causal risk etiology and consequent mediation of brain development.”

An interesting point, which I was not aware of, is that neurodevelopmental disorders in general are more common in boys. When born preterm, for example, boys are more likely to die, suffer complications, or have long-term disabilities.

Since infant boys appear to be more fragile than infant girls, explaining this general difference may go a long way toward explaining the difference in autism diagnosis.

(Side note from me: underdiagnosis in women due to gender bias may be reduced if we can replace “know it when I see it” diagnosis with better scientific understanding.)

Some personal reactions

I’ll switch here from summarizing the book to some of the thoughts I had after reading it. I don’t claim to be an autism expert. I’m just some guy trying to figure out what all this autism noise means to me and my family. Caveat emptor.

Many of my notes are speculative or would require a whole new book to discuss, so I don’t mean to criticize Dr. Waterhouse for leaving stuff out.

I also don’t want to imply that Dr. Waterhouse does (or does not) agree with any of my political or social opinions — I have no idea. Her book tends to stick to factual matters.

Enough defensive disclaimers… you get it.

The practical impact of autism’s reification

For the most part, Rethinking Autism argues against a unitary disorder on scientific grounds (that is, it’s slowing scientific progress).

Much more could be said about the effects of the “autism” concept on our day-to-day habits of thought, and this is why I hope to see Dr. Waterhouse’s argument reach a wider audience.

Often, people have a straightforward idea about autism: they think of it as a single disease, analogous to the flu, which “breaks” the brain. This leads us astray in so many ways. Spend some time reading autism blogs, comments, or a site such as MyAutismTeam, and you’ll find all sorts of faulty reasoning.

Just some of the mistakes people make (in my opinion; Rethinking Autism doesn’t tackle all of them):

  • that it’s a single condition rather than a trait or symptom (with many causes)
  • that there’s a radical break or categorical difference between “normal” (neurotypical) and “other” (autistic) (reality: some underlying conditions might be normally distributed, while others might be bimodal?)
  • that the condition resulting in autistic traits is unequivocally “bad” rather than a tradeoff or mixed blessing
  • that a treatment could be found which would apply to all people with autistic traits
  • that the cure is “medical” in nature (drugs, diet, etc.), rather than educational in nature (perhaps this varies across underlying conditions too?)
  • that whatever condition an autistic person has results in exactly the two traits mentioned in the autism criteria (social impairment, restricted/repetitive behavior) and no others
  • that each paper or presentation or book about autism applies to all people with autism
  • that their loved one will be miserable (because autism sounds so scary) or a genius (because hey, Bill Gates and Mozart have autism too)
  • that autism can be separated from a person
  • that some of a person’s behaviors are “because of autism,” while others are not, and this should affect our response to those behaviors
  • …

Rethinking Autism doesn’t address all of these directly, but its discussion of the “unitary disorder” problem does challenge our assumptions in a helpful way.

Bad analogies lead to bad conclusions, with very real practical consequences.

I’m aware that people will be wrong on the Internet no matter what. But perhaps we’re presenting “autism” in a way that starts even thoughtful people off on the wrong foot. What if we understood autism a bit more like dyslexia or introversion, and a bit less like the flu?

Dr. Waterhouse’s catalog of evidence against the “unitary disorder” model does us all an enormous service by sending us down a path that might get closer to the truth.

Advocacy benefits of a unitary autism

“Autism” as a concept has been politically and socially successful.

Grouping many neurodevelopmental differences together makes them into a big deal, rather than a collection of isolated cases.

We have an emerging Autistic identity made up of people diagnosed with autism.

We’ve been successful in raising funds for autism research. Imagine lobbying and advocacy in the name of “a wide variety of neurodevelopmental differences which create social challenges” — not the easiest marketing task. “Autism” is much catchier.

Very real material benefits are tied to the autism label. Insurance companies in many states are now required to cover autism, but they may not be required to cover developmental delays or differences which are not labeled autism. Similarly, school district services or other government services may be tied to autism diagnosis. Anti-discrimination and accommodation rights kick in with a diagnosed “disability,” which may be unavailable to those whose disability hasn’t been reified.

It will be a long, hard road to change the way we talk about autism (and neurological difference in general) without giving up needed services and accommodations.

One positive outcome, however, could be to expand services and accommodations to those who need them but who don’t quite fit the current idea of “autism.”

It may be a hard road to help every person on a “needs help” basis rather than a “has a disorder” basis. But it could be worth it if we make it to the end.

What should professionals tell those in their care?

Current science appears to be out of sync with current professional practice. The nature of diagnosis may inflict unnecessary stress on autistics and loved ones — diagnosis is an elaborate process ending in a dramatic (and often traumatic) revelation about Autism or Not Autism.

In a cold scientific sense, “your child would benefit from social skills tutoring,” and “your child has autism” can mean about the same thing for many children. But these framings certainly do not have the same impact on parents. A traits-based approach could be much less frightening than a disorder-based one.

With “autism” written into laws, insurance paperwork, school rules, nonprofit charters, books, and every other institutional resource, how can anyone involved with autism be honest about what we know? A diagnosing clinician can’t set aside two hours to tell flustered parents, “look, here’s the complicated truth on the one hand, and here’s the charade (involving an imaginary disorder) you’ll have to participate in on the other hand.”

But misinformation has consequences, as any cursory participation in a support group or online autism forum will reveal.

In my experience, professionals avoid “autism politics” like the plague (understandably); but this leaves their patients unguided and vulnerable to quackery.

People assume that because autism shows up as a diagnostic code in the same spot a doctor would write “flu,” it must be the same category of thing as “flu,” then they reason by analogy. Clinicians might ideally find a way to say “this is a diagnosis but not that kind of diagnosis.”

Stigma, overreaction, quack treatments, and so on are among the downsides of autism diagnosis. If these problems could be solved, there may well be even more kids who would benefit from some social skills tutoring or behavior analysis, beyond those who meet the autism threshold today. It should not have to be a big deal to get appropriate, individualized education.

Defining social impairment, RRBs, SPD

Dr. Waterhouse questions the unitary nature of autism and suggests breaking apart social impairment and RRBs as distinct traits. While this would be progress, I suspect there’s another possible book exploring the traits themselves. For example:

  • What are the best ways to measure these traits? Can we do so dimensionally rather than categorically? Can we measure them across the population and not only in the “disordered” population?
  • How can the traits of social impairment, RRBs, and atypical sensory processing be further decomposed into more specific traits? All of them are quite broad in themselves, and may have the same reification problem that autism has.
  • Many of the conditions which generate social impairment or RRBs may be normally rather than bimodally distributed; when is this is the case? When it is, how do we validate the line drawn between diagnosis and “normality”?
  • When we measure these traits are we trying to measure “functional impact” (effect on quality of life) or are we trying to measure an innate, lifelong feature?

I find that this last point, in particular, creates muddled thinking in the real world across stakeholders and contexts.

Are autistic traits contextual functional difficulties or lifelong differences?

Say you are creating a measure of autism (or its component traits) — a checklist or questionnaire of some kind. Some questions would tend to be relatively stable (less likely to change across multiple administrations to the same individual, even as the individual’s skills improve). Some other questions would tend to be relatively correlated with measures of quality of life or independent living and would improve in response to education and practice. These may not be the same questions. Which ones do you keep? Which are the ideal measures of social impairment or RRBs?

Put another way, if an autistic person, through hard work, learns adequate social skills, are we going to say:

  • they are still an autistic person but one who has compensated for social weaknesses through time and hard work;
  • they were misdiagnosed and never had autism, because autism means that they can’t ever learn social skills; or
  • they had autism but through hard work have now been cured?

In current usage, the word “autism” means “fixed trait” sometimes and “current functional impairment” other times, which creates confusion.

When autism diagnosis operates as a medical/educational “certificate of need for services,” it should reflect degree of practical impairment. But scientifically, we might want to understand autistic traits through factor analysis. That means controlling for other factors such as personality and intelligence and education. The “same amount” of autism, in some theoretical sense, would be more impairing given fewer other compensating strengths.

At one point Dr. Waterhouse quotes P. Szatmari on this point:

social communication and repetitive behaviors may not be the most useful for categorizing children with autistic spectrum disorder … because variation in these dimensions seems to be only weakly associated with variation in outcome and response to treatment, which are more closely related to cognitive and language abilities.

Inserting my own editorial here, I think this points to a need to separate the “medical/educational certificate of need” for someone with autistic traits, from the scientific measurement of said traits in isolation. Not that this would be easy in practice.

Dr. Waterhouse talks about this somewhat by identifying “stakeholder conflict over the control of diagnostic criteria” as one of three “pressing problems for the diagnosis of autism.” One solution to this stakeholder conflict might be to invent different systems of classification for different purposes.

I believe it’s already true in the United States that schools and social security make their own determinations, which aren’t necessarily the same as the medical diagnosis.

Will we find evidence for “not like my child”?

Internet autism fights include the well-known “not like my child” trope, in which parents assert a bright line in the autism spectrum between noncommunicative autistics and autistics able to participate in Internet flamewars.

If we break apart autism spectrum disorder, it is possible that some underlying conditions are general brain disruptions which are always and absolutely disabling; while other underlying conditions are closer to a mixed blessing with strengths and weaknesses. There may also be conditions which are ambiguous, with their value in the eye of the beholder, or with a variable outcome. And of course there will be people with multiple conditions.

This adds complexity to the “not like my child” debate: it means that there may someday be many scientifically-validated lines between the conditions we now label “autism.” Such lines could be used for good or for evil.

Conditions deemed “severe” could see renewed stigma and dehumanization. Conditions deemed less severe could see loss of services and loss of legal protections.

On the positive side, more realistic understanding could lead to more appropriate services and treatments.

As we learn more, the cultural positioning of the facts will have a lot to do with their practical effects.

Savant and special skills, and autistic strengths

To date, attention to autistic strengths has often focused on savantism and “splinter skills.” Dr. Waterhouse devotes a chapter to this topic, with the conclusion that research to date has been inadequate:

In fact, measured intelligence varies widely in autism, and the possible casual web of associations between intelligence, savant skills, superior perceptual recognition and discrimination, and sensory abnormalities has not been determined.

Dr. Waterhouse describes the autistic savant as an “unhelpful stereotype,” and it’s hard to disagree. The terms “splinter” and “savant” seem very problematic to me.

However, I believe there are many better research directions related to strengths.

How do variations in personality and intelligence relate to social impairment? Are there tradeoffs or “tunable factors” in the structure and function of the brain, where evolution and development may optimize it for some tasks at the expense of others? Are there context-dependent traits which are strengths in one context and weaknesses in another? How could schools, in particular, be more or less friendly to particular traits, and can we better adapt them to diverse students?

An occasional paper has interesting leads relating to strengths, for example in “Children with autism do not overimitate” autistic kids copied adult actions in a more cognitively-demanding way than typical kids. Autistics determined the purpose of the task and filtered out useless steps, rather than copying everything without question.

Anecdotal strengths of autistics include hard-to-quantify personality traits such as honesty, straightforwardness, independent thinking, and persistence. I believe there would be value in somehow quantifying or characterizing these stereotypes. Do autism interventions affect these qualities?

Finding ways to talk about autistics (and diversity in general) in a positive way may be one of the more powerful “treatments” we could discover.

As a 2-year-old reader myself, and dad to another 2-year-old reader, I can relate firsthand to hyperlexia, one of the skills Dr. Waterhouse mentions. Darold Treffert’s “Hyperlexia III” paper helpfully explores the heterogeneity of hyperlexia through case study impressions (though Dr. Treffert’s paper is more confident about the meaning of “autism” than I’m comfortable with).

To me it’s a mistake to start from the view that hyperlexia is a “splinter” skill, because it may instead be a manifestation of a more general interest, preference, or ability. One professional has used the term “splinter skill” talking about my son’s reading; I felt this was inappropriate and unhelpful.

Autistic strengths deserve exploration, as do strengths in the general population. How can we understand variations in intelligence or social skills in autistics, without understanding these variations for everyone? Better understanding of intelligence in general means better understanding of how low or high intelligence might interact with autistic traits.

Strengths are a key part of anyone’s phenotype and are part of the data a better theory of autistic traits will have to explain. The full scientific picture must include harmless and beneficial “symptoms” too, not only troublesome ones.

Skills are also an important element of each individual person’s human experience. Even severely-disabled persons have skills. No one can be adequately described using only the language of disorder.

To help an autistic person we need to know what strengths they might build upon to become their best selves. Responsiveness to various interventions, for example, might hinge more upon which strengths are present, than upon which weaknesses are present.

Autism may or may not be shown to include skills, focuses, or ways of thinking which other kinds of minds emphasize less. But whether or not autism involves “special” skills, strengths will vary across autistics, just as they do across non-autistics.

If current research has been limited to “savant” and “splinter” skills then we must get past that research and do better. If there is better research already, I wish it had been included in Rethinking Autism.

Language neutrality

While it’s reflective of the research she’s reviewing, and a medical perspective, I believe Dr. Waterhouse’s book could be improved by more neutral language.

As I argued in a previous post, the value-laden language of disease puts us in a less-than-objective frame of mind. We should all make an effort to use neutral language (“traits” not “symptoms”, “differences” not “abnormalities”), and to mention strengths when applicable.

Four small concrete changes which could add balance to the book:

  • use of more neutral terms where appropriate
  • when enumerating potential components of autistic phenotypes, be careful to include traits which are not currently in the DSM, including positive traits
  • when discussing research toward a cure, also discuss research toward accommodation
  • more exploration of possible heterogeneity-aware research agendas around strengths and skills

I do not mean that autistic traits should be whitewashed or made to sound all roses and lollipops, only that strengths and skills (and variation in those) are part of the complete picture.

For now, we often (usually?) can’t prove whether a given autism-correlated brain difference is even related to practical impairments, let alone how it’s related. Think about someone with bulked-up arms because they use a wheelchair; autism research often does the equivalent of assuming that the large arms keep this person from walking. An autism researcher might identify “excess arm muscle” as an “abnormality.” While perhaps true in some literal sense, in practice we use the word “abnormal” to mean “thing which needs fixing,” so this usage is incorrect. Morton Ann Gernsbacher has a great list of examples in real papers.

Our language habits should reflect our ignorance, to help keep our thinking on the right track.

Research starting from case studies

It may be valuable to mine anecdotal experiences of autism for clues leading to quantitative research ideas. There are many different introspective accounts:

  • Temple Grandin’s “thinking in pictures”
  • The “motor apraxia” or “locked in” description given by many nonverbal autistics, such as the boy in “The Reason I Jump”
  • The “overly intellectual” experience as first suggested by Hans Asperger
  • The “sensory overload” experience described by many
  • The commonalities in accounts of hyperlexia
  • …

The challenge is to map these experiences to measurable and thus researchable phenomena.

Developmental perspective, feedback loops, and neuroplasticity

Following the studies she relies upon, Dr. Waterhouse argues against autism as a unitary phenomenon using primarily snapshot-in-time data. But there’s also evidence of heterogeneity from a developmental perspective, that is, single individuals with changing traits, skills, and neurology over time. Future research could expand on this.

She does say that:

Advances in the understanding of causes for complex autism phenotypes will also depend on the increased knowledge of environmental impacts on brain development, and increased knowledge of the mechanisms of the dynamic processes involved in brain development.

Dr. Waterhouse found a few studies in this area, such as C. Fountain et al on “Six developmental trajectories characterize children with autism.”

I am hungry for more research here.

The unitary account of autism fails to explain optimal outcome, for example. In case studies of so-called Einstein syndrome or hyperlexia III, autistic traits in early childhood do not result in serious lifelong impairment (though the jury is out on whether they result in lifelong difference).

In studies of interventions such as ABA, there have been “responders” and “non-responders”; how did these individuals differ? There’s again some research, but not enough to reliably predict in advance who will respond.

Effective education for autistics tends to be intensive (20+ hours per week) and consist of repeated practice in areas of weakness. We know that this practice gets results. How does this affect what shows up on a brain scan?

When research correlates brain activation or other physical neurological features with autism, there’s rarely an attempt to look at how those features change over time, and how they might relate to practicing skills. Feedback loops may amplify some small feature present at birth into a much more significant difference.

An understanding of autism heterogeneity must include an understanding of change over time.

We would do well to remember that, as Gabrielle Giffords illustrates, the human brain has an amazing ability to adapt and change. Even a bullet in the head may not be as permanently impairing as we intuitively expect. The intensive therapy for Representative Giffords was about the same as that for someone with inborn brain differences: speech, physical, and occupational therapy. Education and practice, in other words.

The brain exists to learn; learning means physical, neurological change. Change could well be viewed as the purpose of the brain. One consequence of autism’s reification may be an underemphasis on change.

On education

At one point Dr. Waterhouse laments that

In fact, the only treatment for autism at present is intense and focused education programs.

She expresses hope for the development of drug therapies, once the conditions underlying autistic traits are unpacked.

Education is inadequate for many autistics, but eliminates the downsides of autistic traits entirely for others.

We might have to be cautious about locating dysfunction in individual children, in those cases where it should be located in educational bureaucracies. The literature of homeschooling and alternative schooling describes at length the ways in which typical schools do not have to be the way they are. Some milder manifestations of autism, ADHD, anxiety, and other traits appear to amount to “school disorder,” reflecting many schools’ inability to provide appropriate education to atypical children.

ADHD does have medication options, which appear to have gone a little bit off the rails.

I’m not categorically against medication, but ADHD may be a cautionary tale where it’s been overused for the convenience of adults.

We should also keep in mind that intensive education remains underused as an autism intervention. Many autistics do not have access. In our area, there are countless kids who need not have a significant long-term disability, but who nonetheless will struggle mightily because their “treatment” consists of an hour per week of sensory gym or social stories. We continue to lie to parents (if only by omission) and leave them with the impression that an hour or two per week of social enrichment may be sufficient.

While researching medication, we could also be saying more loudly that we do already know ways to help, we just don’t always care to pay for them.

Education is less stigmatizing and not inherently medicalized. It sends a message of help (teaching skills) rather than a message of change (removing traits).

Subjectively, my wife and I think of our son’s autism as analogous to dyslexia; he thinks in a certain way that’s friendly to some skills and unfriendly to others. As with dyslexia, education feels like a proper response.

Of course one takeaway from Rethinking Autism could be that not all conditions lumped into “autism” today should be thought of in the same way. We know that some people diagnosed with autism are not responsive to education, or at least not responsive to the kind of education offered.

I don’t expect Dr. Waterhouse would disagree about the value of appropriate education, and it would be great to have medication available as an option. I just worry about its misuse. I don’t know the answer.

Reification of conditions besides autism

A similar “reification” critique likely applies to other DSM disorders, as Dr. Waterhouse occasionally hints. A similar book could potentially be written about ADHD, for example.

While I haven’t read much academic research about giftedness, many parents and popularizers claim that giftedness isn’t just higher IQ, but a categorical difference. In fact, they’ll often describe qualitative differences which overlap autism: social distance from peers, intense focus, and sensory issues.

More than one parent (that I’ve seen) has turned up in an Internet forum rejecting an autism diagnosis on the grounds that “really” their child is gifted, as if autism and giftedness were known to be mutually exclusive. These parents implicitly believe that there are two unitary phenomena “autism” and “giftedness,” each of which produce similar observable traits, but which are distinguished by some as-yet-unknown underlying “what’s really going on.” Professionals do this too; see “That’s not autism, it’s simply a brainy, introverted boy”, for example (my previous criticism of that article).

Perhaps there’s research supporting criteria other than “I know it when I see it” for this distinction? Who knows.

Conclusion

I’m grateful for Lynn Waterhouse’s book and fervently hope it will help knock autism research out of a rut (not to mention help improve everyday thinking about autism).

My “crash course in autism” as a new parent included a research review textbook, Autism Spectrum Disorders (edited by David Amaral). I was struck by how little scientists know. And I was struck by how impractical the research was; reading through it, I felt that:

  • only some fraction of the knowledge applied to my son
  • the researchers mostly hadn’t figured out who their findings applied to

As currently used, the word “autism” has very little to say about any particular autistic person — and as a result, neither does the research. This is a disservice to everyone with neurodevelopmental differences, and their loved ones.

Rethinking Autism moves the conversation forward and I hope it will change our thinking for the better.

Unscientific words in scientific papers

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It’s common for researchers to compare an “autism group” with a “control group,” on some dimension. Perhaps some part of the brain differs in size or in activation, or the neural network graph has a different shape, or kids with autism have more allergies, or they are less prone to certain cognitive biases, or whatever, the list is a mile long. Then we get a “such-and-such correlates with autism” discovery.

In writing up their research, scientists get out their mental thesaurus and try to avoid saying “more-connected neural network” and “less-connected neural network” over and over. They might start to say things like “connectivity deficit” or “excess connectivity” or “abnormal neural network” or “pathological neural network” or “defective gene.” If the autism group has more then it’s “excess” and if it has less it’s “deficit.”

This is bad science.

Think about what you’d have to prove to justify the words “excess” and “deficiency.” You would need to determine the “best” genotype or phenotype. Then you would need to know thresholds (how far someone can be from “best” before it’s a practical problem). When was the last time an autism study showed either of these?

Just because we demonstrate that something is correlated with autism, we haven’t demonstrated that it is “bad.” We haven’t shown that it results in the negative aspects of autism. We haven’t demonstrated that it’s unequivocally bad; perhaps it’s a mixed blessing. Or perhaps it’s something innocuous and irrelevant (it could share a cause with some forms of autism, but have no functional effect). Or perhaps it’s an effect of autism, rather than a cause.

In most correlation studies, there’s no evidence whatsoever about how or why the thing in question relates to autism, there’s just an unexplained correlation.

Many biology textbooks discuss sickle-cell disease, a genetic trait which can be an advantage: in heterozygous form, it confers resistance to malaria. In tropical regions, evolution tends to select for this gene, even though it has major downsides.

The various conditions which involve autistic traits are undoubtedly more genetically complex. If we are humble and scientific, we might assume that many traits which correlate with autism exist in our genetic heritage for a reason. Since we don’t know what the conditions are, what the endophenotypes are, or how it all relates to observed autistic traits, we need to reserve judgment on whether anything we observe constitutes a “deficit” or “excess.” Stick to saying it’s a difference.

Even when a trait is plainly a deficit in one context, it may be a strength in another. Is sickle-cell disease a net negative? — well, do you live in a malaria-infested region or not?

In my speculative theory about how autism works in our family, it’s easy to see how causes which contribute to “intellect” and causes which contribute to “instinct” would need to be in balance. A person too lopsided in either direction will have trouble. None of the genes or other causes which push the balance one way or the other would be “abnormal” or “deficits” in themselves; only an imbalance or preponderance — potentially in either direction — would cause a problem.

I’m not saying this is how our particular autism condition works, or how any condition works. It’s pure speculation. But the point isn’t that I’m right about this, it’s simply that in many possible scenarios, we don’t know whether the phenomena we’re observing are net positive, net negative, context-dependent, irrelevant, or what.

Outside of autism, think about intelligence. Why are human IQs distributed as they are? Well, some people say that IQ at the very upper limits of the distribution can be a liability. Anecdotally, people with IQs of 150 or 160 may be barely functional. So perhaps intelligence, also, requires a balance. Perhaps we need some genes to make us smart enough, and some other genes that keep us from being too smart. In this balance, there may be many genes which are neither categorically “good” nor categorically “bad.”

Scientific papers should strive to use neutral language, reserving judgment on the merits of the observed phenomena, unless there’s actual evidence about those merits. This goes double for poorly-understood genetic and neurological features.

No “deficits” and “abnormalities” and “dysfunctions,” just the facts.

This should be done to promote sharper, clearer, more precise, more accurate research.

There are ethical implications as well (we should be concerned about stigma and eugenics). But even if one doesn’t care about ethical considerations, factual considerations ought to rule out language based on unproven assumptions about the “best” genotype or phenotype.

(To be clear, I’m not talking about an observable problem described as such; “difficulty conducting a conversation” can be described as a “pragmatic deficit” and that’s fine. The problem comes when we have some proposed underlying genetic or neurological feature, but no proof of that feature’s specific effect on observable behaviors or quality of life.)

What are “intellect” and “instinct”?

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I named this blog based on a Hans Asperger quote:

Normal children acquire the necessary social habits without being consciously aware of them, they learn instinctively. It is these instinctive relations that are disturbed in autistic children. Social adaptation has to proceed via the intellect.

Other than the loaded language, this “sounds right” to me for my family’s particular experience of autism. But I’m not sure how to translate it into a precise, testable idea.

Countless different intuitions, scientific terms, and research results may relate. Here are some of the words I’ve discovered so far:

  • Intellect vs. instinct
  • “Book smarts” vs. “social/street smarts”
  • Conscious vs. unconscious
  • Explicit vs. implicit
  • By teaching vs. by osmosis
  • Systemizing vs. not-systemizing
  • Autism vs. schizotypy
  • Executive attention vs. default network
  • Denotation vs. connotation
  • Symbolic vs. indexical
  • Nonsocial vs. social
  • Left brain vs. right brain
  • Analytical vs. intuitive
  • Head vs. heart
  • Mind vs. body
  • Critical vs. generative thinking
  • Know-what vs. know-how
  • Thinking vs. doing
  • Explaining vs. practicing
  • Slow/system-2 vs. fast/system-1 thinking
  • Conscious choices vs. habit
  • Formal vs. tacit knowledge
  • Declarative vs. procedural memory
  • Modular vs. unstructured mental lexicon (from “The Hyper-Modular Associative Mind“, Kennett, Gold, and Faust, 2015)

It’s striking how many scientists, artists, and philosophers mention this dimension (or these dimensions) of human variation. And it’s striking how many different words there are in the list — which of them are the “right” words? How many would we need in a complete, but parsimonious, theory? Surely not all of them?

Some questions I can’t answer:

  • How can we describe this in a way that’s measurable, valid, and corresponds to physical (neurological) phenomena? What is this trait, or what are these multiple traits — if anything at all? Perhaps we’re looking at an appealing “folk” theory with no empirical substance?
  • Does this trait have anything to do with autism? How about to some of the autisms?

If you have good pointers on where to dig deeper, I would love to hear from you.

Many of the terms in my list above come from a particular intellectual source or tradition (though I mixed in some everyday words with the technical words).

I’d like to go through and give background on some of these, but it’s too much for one blog post, so I’ll save it.

Typically, books and papers referring to one of the terms in the list above do not mention the others. Often I think researchers are unaware of other potentially-relevant research.

Where am I coming from?

Long ago somewhere I can’t remember, I read a discussion of knowing what vs. knowing how. The author’s thought experiment was about walking. Imagine walking with conscious planning, thinking consciously about each muscle and movement involved. Attempting to do this makes us terrible at walking.

When I find myself struggling with social or motor skills, this is the feeling. My impression of my son is the same. Rather than trying something, playing, experimenting he wants the system first. First organize and analyze it, then carefully and cautiously we might try it.

A simple example. There’s a curriculum for writing called Handwriting Without Tears. Despite teaching himself to read when barely 2, my son refused to even try to write. Then someone showed him this curriculum in which letters are broken down into three named categories according to how you write them; and then each letter has numbered strokes to be done in sequence. Suddenly my son was interested in writing. He approached it by first memorizing the whole Handwriting Without Tears system, and only then was he willing to try to write. I believe this is not how most 3-year-olds work, but this is how he works.

It was very clear at age 2 that my son found memorizing organized information (and reviewing the memorized info) highly pleasurable. It’s his fun. And the same trait is evident in me and my father. Together with that, we seem to be indifferent to “play” in the usual sense. Before becoming a parent, I had no idea that these preferences appeared so early in life.

Research tells us that practice makes perfect, and that it’s useless or even harmful to be able to explain an action, vs. simply doing it. Moreover it’s exhausting. Conscious decision-making uses up resources in ways that autopilot actions do not. When introverts say social interaction “drains their energy,” could it have to do with a higher degree of conscious work?

But it’s not always a weakness. Imagine trying to program a computer to walk, or imagine a research scientist studying muscles. The same “overthinking” that makes one terrible at walking might make one pretty good at those tasks.

In everyday contexts “intellect” may be crippling pedantry, bogged down in irrelevant detail. In other contexts, an immersion in detail, combined with explicit reasoning from first principles, may be vital to understanding reality. Received wisdom, groupthink, and intuitive judgments often turn out to be flawed. Somebody has to go back and “think slowly” and figure it out.

One simple study (“Children with autism do not overimitate”) had to do with children copying “unnecessary” or “silly” actions. Given a demonstration by an adult, autistic kids would edit out pointless steps in the demonstrated procedure. Think about what’s required to do this: the procedure has to be reconstructed from first principles to edit the silly out. The autistic kids didn’t take someone’s word for it, they wanted to start over. (This study would be so much better if it went beyond “correlation with autism”.)

Even if we found that autism correlated with some measure of “intellect vs. instinct,” we wouldn’t know that this difference “was” autism; it could be a secondary effect. For example, humans seem to have an innate “reward system” encouraging them to practice through play (creating instinctive knowledge). A difference in relative reward from intellectual vs. instinctive activity could start a feedback loop leading to different levels of skill. Differences in relative reward could in turn have many causes… decreased enjoyment of play, increased enjoyment of intellectual systems, sensory aversives, who knows.

Some autistics describe experiences that seem similar to mine, for example I identified with Luna Lindsey’s post on reticulating splines. But many others focus more on sensory overload and anxiety, something I don’t identify with as much. More evidence that we need to talk about autisms, not a single autism.