Tag Archives: hyperlexia

Schools are disordered, and they blame our kids

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

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

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

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

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

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

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

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

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

School: far less flexible than real life

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

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

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

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

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

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

Our family

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

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

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

Schools and autism

Why are schools hostile to autistic kids in particular?

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

Schools and strengths

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

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

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

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

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

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

It doesn’t have to be this way

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

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

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

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

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

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

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Book: “Rethinking Autism: Variation and Complexity”

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.

an annotated, selected hyperlexia bibliography

We have much to learn about “subtypes” or “patterns” within autism. The DSM-5 just scrapped the most famous subtype, Asperger’s Syndrome, due to lack of evidence. Lynn Waterhouse argues that even “subtypes” or “the autisms” gives the autism category too much credit.

Nonetheless, anyone trying to understand themselves or a loved one will scour books and the Internet for anecdotal data that clicks. We all want to read about people who resonate with our own experiences. No matter where someone is on the spectrum, they’ll be able to find others who are remarkably similar, and still others they have little in common with.

People use the term hyperlexia for one of the less-well-known anecdotal subtypes, and I think I’ve found most of the materials on this subject. I thought I’d make a list of some favorites.

I should say, we’ve found generic “high-functioning” autism and Asperger’s resources more useful overall. Still, hyperlexia resources add extra ideas.

The very best resource may be paying attention to our son and what he’s doing today.

Background

The word hyperlexia is overloaded. In speech therapy it can refer to readers who are excellent at decoding but poor at comprehension (a sort of “reverse dyslexia”). But it can also refer to any precocious reader, to autistics who learn to read precociously, or to autistics who learn to read but have a lot of trouble with most other skills. There’s no “official” definition of hyperlexia (there’s no equivalent to the DSM criteria for autism).

My son and I both learned to read at age 2. For us, I believe reading is one example of a general love of learning information; not just any information, but structured information. For example, if you have things which go in a certain order, or can be placed in categories, those things are much more interesting to memorize. Letters, words, and numbers are at the top of the list. My son also loves street names and driving routes, for example.

He and I both like to explore alternative ways of organizing the same information. So for example, putting letters in reverse order, or sorting them into the three Handwriting Without Tears categories, or listing all the routes that could be taken to drive from point A to point B.

That’s what hyperlexia means to us. I don’t believe it is that different from the prototypical Asperger’s/HFA autistic, but it seems possible that there’s a little extra in common between kids who find letters fascinating at an early age.

From what my mother says, I was a more Aspie-prototypical “little professor” kid, while my son learned language in a different way that one hyperlexia source describes as “foreign language phrasebook” and another as “context-appropriate delayed echolalia.” He seemed to be brute-force rote-memorizing his way through language, treating every sentence as its own vocabulary word (while the more typical language development path catches on to syntax more quickly). On one formal language assessment, he had a gap between grammar (below average) and lexicon (above average). Over time his language has improved.

My son likes to learn and play with structured information. As far as I can tell it isn’t an anxiety response or otherwise something to pathologize. He finds it fun and interesting.

We’ve used this to teach. For example, he didn’t like to work on handwriting until he discovered that Handwriting Without Tears put the letters in three categories and gave him numbered steps to write each letter.

Bibliography

Phyllis Kupperman’s presentation. This may be the most comprehensive starting point. Phyllis Kupperman at the Center for Speech and Language Disorders in Chicago has seen many hyperlexic children. She has a continuing education presentation at linguisystems with lots of background, references to hyperlexia-related research, and her own observations. To read this presentation you have to pretend to be a speech therapist and sign up on the site (it’s free).

The Center for Speech and Language Disorders, Phyllis Kupperman’s practice, has some hyperlexia information online and a bibliography.

The Hyperlex discussion group has a lot of great people along with some useful info in the “Files” area. See the group here.

Priscilla Gilman’s book and writing. Ms. Gilman has a lovely memoir, The Anti-Romantic Child, about her son who has hyperlexia and autism. She wrote an abbreviated version of her story in this Newsweek article. She also wrote about the value of her son’s reading in the New York Times. Her work was meaningful to us because her account of her son was the first time we “recognized” a child very much like ours.

Reading Too Soon by Susan Miller. This out-of-print book has a lot of great detail. Keep in mind that much conventional wisdom about autism has changed over the last 20 years. Ms. Miller describes the “foreign language phrasebook” style of speech, and makes this observation:

Language and behavior can be taught very specifically. It is important to understand that hyperlexic children will not “pick up” from the culture around them the way most children do. Given a demonstration or visual model, however, these children can use their strong memories to their advantage.

I believe this is the same point as Hans Asperger’s in 1944: that the children he described did not learn “instinctively” and rather fell back on “the intellect.” (As you can see from the name of this blog, I value this observation as a way to describe myself and my son. Though at the same time, I haven’t found a characterization of what explicit/implicit intellect/instinct might mean in a scientifically-observable sense.)

Drawing a Blank: Improving Comprehension for Readers on the Autism Spectrum by Emily Iland — at last, a book in print! This one is specifically about strategies for readers who struggle with comprehension. As a parent of a child with autism, be aware that dyslexia (where the hard part is DECODING) is a MUCH more common reading disability than hyperlexia and autism (where the hard part is COMPREHENSION). The task of decoding may be very autism-friendly, at least for certain kinds of autism. Because dyslexia is more common, many educational materials and teacher instincts are backward for hyperlexics.

Drawing a Blank has a few pages of discussion about hyperlexia and possibly-associated traits. (Update: Emily Iland kindly commented over here that the whole book is really about hyperlexia.)

Hyperlexia III: Separating ‘Autistic-like’ Behaviors from Autistic Disorder; Assessing Children who Read Early or Speak Late by Darold Treffert. One of the most commonly-referenced hyperlexia articles online, I found this one both fascinating and frustrating, so I’ll write a bit more about it. (For some reason, direct links to the article don’t work; you should be able to find it for free by searching the web for the title. Dr. Treffert also wrote a shortened version for Scientific American.)

Dr. Treffert argues that early reading may be simple precocity (“hyperlexia I”); a “splinter skill” amidst autism (“hyperlexia II”); or an autism-like developmental pathway he calls “hyperlexia III,” in which autistic traits fade over time.

This article attempts to distinguish autism-like from autism, an exercise that I have a lot of trouble buying into. To me, it’s also problematic to describe any skill as a splinter skill, something Priscilla Gilman gets at. Skills are skills, especially when they’re as powerful as reading.

Dr. Treffert does not suggest doing nothing in the case of hyperlexia III. He suggests seeking intervention as for autism: “Speech and language therapy, occupational therapy, and ABA to address the areas of speech and comprehension, sensory issues, social isolation and ritualistic behaviors, for example, can all help with the autistic-like symptoms, just as they do in those children with actual autistic disorder.”

My view, which seems to be shared by our local medical community, is that anyone who has autistic-like symptoms and needs those kinds of interventions has autism. (And from a practical perspective, if a person needs those interventions, they had better be diagnosed with autism or they will not get adequate help — barring wealthy benefactors.)

On the Internet, I’ve seen more than one parent grasp at the “hyperlexia I, II, III” categories in order to escape the dreaded word “autism.” Please remember that simply avoiding the word does not change a person, while appropriate help may well do so. Children may be precocious readers, gifted, introverted, and have significant difficulty in areas such as social interaction and motor skills, as I did.

For the smartest kids, earlier intervention may well be the best, because they may be the most self-aware when older, and very responsive to early help. Parents’ fear of autism doesn’t do these kids a service. (See also this book and this book, but most importantly remember to see a dimensional person, don’t get hung up on categories. Don’t imbue the word “autism” with too much power; as you can see from Dr. Treffert’s paper among others, the experts don’t even agree on what it means.)

My mother read Dr. Treffert’s article and felt that I was a good fit for “hyperlexia I” while my son was a good fit for “hyperlexia III.” But I was also a good fit for Asperger’s Syndrome and was socially incompetent throughout school, with repercussions into adulthood. The key trait Dr. Treffert notes for “hyperlexia III” is “affection,” but plenty of kids with autism are both affectionate and have autistic traits that stick around long-term (look no further than Priscilla Gilman’s son, or our son so far, for examples).

I very much appreciated Dr. Treffert’s attempt to unpack some different developmental patterns and the characteristics he had seen in his career. I also appreciated knowing my son was not alone (the “hyperlexia III” description does fit him well).

At the same time, I think it’s more mainstream (and likely more useful in practice) to look at hyperlexia and affectionate/attention-seeking behaviors as “good signs” within autism, rather than indicators of a not-currently-recognized condition distinct from autism. For now, autism is a family of autism-like conditions, and nobody really knows how to break them apart.

It’s safe to guess that hyperlexia I, II, III are points on a spectrum rather than discrete entities, too.

Hyperlexia in Children with Autism Spectrum Disorders, Tina Newman et al. PDF document here.  Some interesting findings: that decoding-with-poor comprehension exists; and that hyperlexic autistics had strong nonword reading (were decoding, not sight-reading). On a more personal note, the paper mentions that “Two families reported that their young children would pull them around parking lots to read all the numbers and letters on the license plates,” an experience we remember well (our son did this often from age 2-3 or so).

This paper also has a lot of good references to trace if you’d like to start reading scientific papers related to autism and hyperlexia, though many are not available online. One notable piece of prior research cited,  from Fisher et al., found that hyperlexia was a strong indicator of positive outcomes in autism (note that this may be an alternative way to interpret Dr. Treffert’s “Hyperlexia III”).

A Descriptive Study of Hyperlexia in a Clinically Referred Sample of Children With Developmental Delays, Elena Grigorenko et al. On Springer here, though I think I found it as a free download someplace I can’t find right now. Two findings in this paper were that all of the hyperlexics among the 80 children studied were diagnosed with autism; and that hyperlexia was not associated with IQ (it was not more characteristic of the high-IQ children than the other children).

Incidentally, all these hyperlexia papers are great examples of more useful autism research. Scientifically, early reading by itself is almost certainly a red herring, in that there won’t be an “early reading” neurology. Rather, either some neurologies are more likely to learn to read early, or learning to read early affects development in important ways, or both. But it’s great to see researchers digging in to the autisms and looking for meaningful distinctions.