Feedback loops, introversion, and autism

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In this article, Scott Barry Kaufman looks at a new study which may show evidence for intelligence as a feedback loop:

The researchers argue that their findings are best understood in terms of genotype-environment covariance, in which cognitive abilities and knowledge dynamically feed off each other. Those with a proclivity to engage in cognitive complexity will tend to seek out intellectually demanding environments. As they develop higher levels of cognitive ability, they will also tend to achieve relatively higher levels of knowledge. More knowledge will make it more likely that they will eventually end up in more cognitively demanding environments, which will facilitate the development of an even wider range of knowledge and skills. According to Kees-Jan Kan and colleagues, societal demands influence the development and interaction of multiple cognitive abilities and knowledge, thus causing positive correlations among each other, and giving rise to the general intelligence factor.

Scott talks about “Matthew effects” in his book,

… named for the biblical aphorism “For to him who has shall be given and he shall have abundance; but from him who does not have, even that which he has shall be taken away (Matthew 25:29).

The environment can take even a tiny genetic or environmental advantage and “multiply” it again and again as such interactions are reiterated through the course of one’s development. The other side of the coin is also possible, of course. A slight genetic or environmental disadvantage can lead a youngster to avoid situations where that difficulty would be revealed. Yet those are precisely the situations that would enable the child to practice the task and make up for the disadvantage. Instead, the child misses the boat while peers sail off ahead.

Often, we might attribute too much to innate traits rather than feedback loops and skill development, leading to a fixed rather than growth mindset. Let’s think about this beyond IQ, in the context of personality and autism.

For example, I would consider myself introverted, often defined as someone who loses energy during social interaction. Is this a fixed personality trait, or could it be a skills issue? What feedback loops might amplify avoidance of social interaction?

I “flunked” the Reading the Mind in the Eyes test. As a child (like my son) I avoided the other preschoolers and didn’t practice interacting with them, which I believe contributed to social incompetence later on. Once I decided maybe I should talk to a peer, in elementary school perhaps, I sucked at it.

Eventually (young adulthood?) other people mostly plateaued on social skills and I sort of caught up… especially in professional contexts where I’ve had many chances to practice.

In personal friendship contexts, I haven’t caught up to the average person, and so far I’m not willing to do the enormous amount of work I believe I’d have to do to catch up. Not to mention the embarrassment and anxiety.

According to the mind in the eyes test, I still don’t know what people’s facial expressions mean, and in conversations I’m trying to figure out what the hell is going on when (I guess) others are not. (This is sort of like being colorblind; you can’t tell there’s an issue without comparing to others or taking a test.)

How much of the “introversion” may be due to someone working harder due to poor skills — working harder leading to loss of “energy” and no rewarding feeling of “flow”? To what extent are poor interaction skills from a lack of practice rather than innate difference?

I certainly believe in innate difference; I watched how my own son’s temperament was baked in from a very early age, and saw how his temperament led to avoiding peers. Most parents can relate.

But we’ve also seen that intensive early intervention works. We’ve asked our son to practice interacting over and over and over, building those skills up. Where some parents make their kids practice the violin, we’re making him practice playing with a friend. And he’s gotten much better at interacting — and also much more interested in and comfortable with doing it.

We’re asking him to practice hard in order to break the feedback loop. Early intervention isn’t about the time with the therapist per se, it’s about play and friendships for many years to come, and how all those opportunities to practice may lead to better adult skills and a better life.

Sometimes I speculate that not liking to practice or strongly preferring knowing-what to knowing-how could be an early trait in my family’s particular flavor of autism. Or put another way, since the purpose of play is practice, not liking to play leads to missing important skills. Could this create the correlation between social skills deficits and motor skills deficits? Both social and motor skills are know-how rather than know-what tasks, typically learned through play.

It’s very likely that other classic autistic traits are part of a feedback loop. Take eye contact. Does someone avoid eye contact because they don’t get any meaningful information from it, or do they not get meaningful information from facial expressions because they’ve rarely practiced looking at people’s eyes? It might be both, feeding on one another.

For social interaction in general, the worse you are at it, the less rewarding it is. When interaction attempts routinely fail or backfire, you’ll soon give up and stop practicing. (And when you do practice, it won’t be with the kind of playful mindset that best supports learning.)

(One caveat that could apply to all my posts: autism should be the autisms, and what I’m saying here is based on my family’s kind, whatever it turns out to be. For example, intensive early intervention has little effect on some kids in many studies, while it has dramatic effects on others. Nobody knows why.)

an annotated, selected hyperlexia bibliography

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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.

the trouble with “overdiagnosis” rhetoric

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There’s a common sentiment — one I shared before I knew anything about autism — that kids today get too many labels. How can such a huge percentage of kids have autism, ADHD, and so forth? Here’s today’s example article at Salon.

I’ve come to believe that there’s a real concern behind this sentiment, but it accepts too much of the status quo. The problem is not that we’re putting people on the wrong side of the line; the problem is that our bureaucracies insist on drawing a bright line where there isn’t one… and that people are so afraid of autism when they need not be.

If we look at real humans in all their dimensional richness, then we can estimate that they are at 10th or 90th or 99th percentile on “autistic traits,” as observed on some measure such as the ADOS. These tests (not 100% successfully) try to to pick apart autism as its own separate trait, distinct from IQ, personality, or other factors.

I haven’t seen convincing research that supports a bimodal distribution. There isn’t some kind of bright line where you have autism on one side and not-autism on the other side. (If you have a good counterpoint reference here, send it along!) There seems to be evidence to the contrary, in fact (search term: “broad autism phenotype”).

So imagine the current autism line is at the 99th percentile of autistic traits (consistent with around 1 in 100 prevalence). If we measure someone at 98th percentile instead of 99th, or 99th instead of 98th, is that some sort of horrible travesty? Many experts say that these “just outside the line” people would benefit from the same supports that “just inside the line” people will.

If we get worked into a lather about overdiagnosis, our objection is something like “this person has many of the same traits and needs the same help as a person with autism, but isn’t quite autistic!” What does that even mean? Who cares?

If a kid doesn’t interact with peers, they’ll probably benefit from some prodding and help to do so. If an adult can’t manage friendships and it makes them unhappy, they’ll probably benefit from help addressing that need.

When we brought concerns about our son to a doctor, we had a speech evaluation after just a week or two of waiting, and it established that he had a language delay. But insurance didn’t cover “needs help with language”; it only covered “autism.” We had to wait 4 months to get the full autism workup, at which point we could get speech therapy covered. How does this make sense?

If someone “needs help with language” they should get help with language. If they “need help with peer interaction” they should get help with peer interaction. If they “need help with reading” they should get help with reading. What does a binary, yes-or-no diagnostic label have to do with it?

Sure, it’s useful to do a full assessment. Look at IQ; look at personality traits such as anxiety; look at autistic traits such as ADOS score. All these things are valuable in understanding a person. But if we’re trying to draw some kind of bright line between 98th percentile ADOS gets nothing and 99th percentile ADOS gets 20 hours per week of intensive intervention, we’re out of our minds.

I’ve noticed that none of our son’s therapists or educators really use the autism diagnosis at all because it simply does not have significance to their practice. In practice, we want to know “can the child answer wh-questions? if not then let’s work on it” or “does the child make requests to peers? if not then let’s work on it.” In fact, using the diagnosis usually leads them to misjudge what our son needs; they might decide he needs visual rather than written supports even though he’s been reading since age 2, for example, because kids with autism are “visual thinkers.”

People also object to overdiagnosis because they feel that labels are harmful. “Why lower the child’s self-esteem and stress out the family?”

But wait. Is the harmful side of labeling somehow OK if a person has “enough” autism? Why should anyone have to suffer here? How about working to remove the harm of these labels, or how about simply sticking to dimensional measures? The problem is medicalization, pathologization, and stigma; the problem is not our recognition of someone’s individual needs.

Dr. Gnaulati’s argument in Salon boils down to: we mistreat autistics so badly that we should avoid saying that anyone is autistic, unless we absolutely have to. He says if we label someone autistic we’ll “devalue their mental gifts” and treat their strengths as “symptom[s] to be stamped out.” Maybe the problem is mistreating autistics, rather than exactly which people get this mistreatment. I certainly do not treat my son in the way he describes, and neither do any educators or therapists if we’re going to keep working with them.

What I’d like to see, emphasized much more than a diagnostic label, would be something like: “according to our tests, this person has XX percentile IQ, XX percentile creativity, XX percentile autism, XX percentile language, XX percentile whatever else… all of these have a huge margin of error… and overall we think doing A, B, and C would be beneficial for this person, but let’s adapt our approach over time as we learn more. And let’s focus on possibility not probability.” That’s the honest approach.

Labels come about because our institutions, medical and educational, are incapable of dealing with individuality unless they’re forced to. Insurance companies and schools need a label. I say: if that’s what bureaucracy requires, then that’s what bureaucracy gets. Let’s label everyone who needs any kind of individualization — pretty much EVERYONE.  Not my problem and not going to affect my self-image or my image of my son. This is a bureaucratic hoop.

Adopting labels to get help isn’t “overdiagnosis”; it’s an understandable and rational response to inflexible institutions and their refusal to deal in subtlety or individuality. The word “overdiagnosis” implies that there’s something more at stake than nonsensical hoop-jumping. It blames the wrong people for the wrong problem.

Labels are equally problematic when they are “positive,” such as “gifted,” or “high-functioning.” Is the just-barely-gifted child so different from the almost-gifted child? Get real.

Reducing a dimensional, varying-over-time trait to a yes-or-no question throws out a hell of a lot of information.

Maybe a problem is that we tell parents their children are “broken” or “not broken” or “gifted” or some other bucket, instead of giving them useful insights. Maybe the problem is that not all autistics are the same, and individualized education and support therefore has to be exactly that. Add up ADHD and dyslexia and gifted and everything else, and the reality is that people are diverse. Our institutions should be built assuming diversity — but they are not. The solution to this is not to make our diagnostic buckets more accurate; the solution is to think about people instead of buckets.

One more point about autism specifically. Researchers, educators, and clinicians seem to disagree on whether the autism cutoff has to do with “degree of autistic traits” or “level of impairment in practice.” Say you have someone with a high IQ and very resilient personality, with the same degree of “autistic neurology” as someone with lower IQ and a fragile, anxious personality. The outcomes may be very different. Is an autism diagnosis determined by the practical outcome, or by autistic traits?

If your goal is to research the relationship of autism to specific neurological differences, you may want to look at autistic traits, not outcome. If your goal is to decide whether someone qualifies for disability benefits, you want to look at outcome. Much casual discussion, research, and clinical practice is completely unclear on whether autism is a trait or an outcome. Even the DSM is unclear on this.

Overall life outcome will be a function of many factors; many traits, many life experiences. Plenty of people who display autistic traits as toddlers will have a good outcome (not that a good outcome has to involve dropping autistic traits). We don’t have enough research to reliably predict who will have the best outcomes. If we say the ones with optimal outcomes were “misdiagnosed,” we’re implying things like:

  • it was a mistake to offer these kids help
  • the clinician could have or should have predicted the outcome
  • the kids have no trace of “autistic neurology” when older

As far as I know, we can’t say those things yet.

In young children, we don’t know their eventual level of impairment, only their age-normed degree of autistic traits. That’s why childhood diagnosis is based on traits more so than impairment. (Incidentally: scores on the same ADOS module drop as children get older, because kids often learn the behaviors ADOS looks at over time … autism is identified by the delay in some of the behaviors.)

Making this more concrete, let’s take my son. He didn’t spontaneously take up pretend play. But since he’s very bright, as soon as someone shows him a game such as “let’s pretend to go camping” he can learn it and even vary it. Later, someone comes along and they might say “well this kid can play camping, so it isn’t autism.” Has his autism been cured? I don’t think it has. He’s an autistic kid who can play camping.

But I do think his practical difficulty faced is less than that of a child who might be unable to learn to play camping. That’s because my son has an amazing memory which he uses to adapt. The autistic trait is still there (that playing camping didn’t independently occur to him as an interesting thing to do), but his intellectual strengths allowed him to play camping with some friends the other day, and he loved it.

Or take me — I had a hard time as a child, but as an adult, I’m completely capable of handling most social situations, especially professional ones that I’ve practiced thousands of times. Am I “less autistic” than the younger version of myself that couldn’t handle those? I don’t think it makes sense to say that. It does make sense to say that I need no supports now, but I used to need them then. The “it’s misdiagnosed unless the person is greatly impaired” camp might say that I’ve “cured” myself over time, but I’d prefer to say that I’ve learned and adapted.

The DSM, of course, contributes to the mess. It defines autism as a list of autism-like traits (though some disagree and attempt to distinguish “autism-like” from “autism”). If autism-like can be split from autism with the DSM criteria, it’s only by relying on weasel adverbs such as “significantly,” or something like “experts know it when they see it.”

Let’s face it that autism-like is autism for now, because we don’t know the etiology. We don’t know the bright line. All we know is that if a person has certain traits, they likely (though not certainly) would benefit from a certain kind of help. In adults we can ask “are they unhappy about something and do they want help with it?”, in kids we have to guess at the future.

In fact, it’s a minor miracle that the ADOS and other clinical tools work as well as they do; predicting a lifelong pattern based on a few behavior details at age two or three is amazing, even if not perfect.

Sorry to rant at so much length, but as you can see I find this very frustrating.

Getting outraged about “misdiagnosis” misses the point; it blames clinicians and parents and autistics. But our current knowledge does not support the idea of drawing a bright line. It supports the idea of measuring individuals along many dimensions and providing them the individual supports they likely need based on what we know. The need for a bright line comes from politicians and bureaucrats, and those are the people who should catch flak.  Why are we complaining about clinicians and parents for “drawing the line in the wrong place” when many people aren’t interested in this stupid line-drawing exercise in the first place?

My son’s therapists, and his parents, would be more than happy to help him with peer interaction and language purely on the basis that he needs help with those things. “Defining autism” is somebody else’s made-up problem, not mine.

The diagnostic line shouldn’t even matter that much, unless we’re mistreating people based on it. Let’s stop that.

P.S. According to the local school team, an independent autism-specialist diagnostic team, CARS, ADOS, SRS, and more, my son’s autism was “clear.” He’s as tested and certified as it gets. According to me before hearing all that, it was borderline. It turns out that my frame of reference was from my own childhood and my relatives’ behavior — everything I grew up with was toward the autism end of the human spectrum.  So my perception of “normal” is someone else’s perception of “autism.” I’m not the parent claiming my kid has autism while the experts disagree; very much the opposite.

P.P.S. What does the “overdiagnosis” crowd propose we do about it? You don’t just go talk to a psychologist for 15 minutes and get an “autism” sticker. Our son was evaluated by two independent teams, one at the local school (potentially biased against providing services) and one at the local autism center. All had extensive autism experience. Between them they spent many hours, used 5 different well-validated autism-specific diagnostic instruments, interviewed both parents and teachers, observed our son in preschool, did non-autism-specific assessments such as intelligence and language… on the whole it was extremely thorough and evidence-based. If they still turn out to have “misdiagnosed” him because he turns out to be a perfectly happy person — which I expect! — then what were they supposed to do? Ignore what they were looking at? Spend even more time? What is the suggestion?

Dr. Gnaulati uses the case of William as an example, and says “within minutes of playing with William, I knew, unequivocally, that he was not ‘on the spectrum.'” Is his suggestion that his 5-minute expert judgment (gut feel?) is the right way to diagnose autism? Did previous evaluators of William see something different, or did they disagree with Dr. Gnaulati on where the “autism cutoff” lies? What are parents and autistics supposed to make of this clinical infighting?

It’s easy to say in retrospect that autism interventions were an overreaction to a particular person’s autistic traits (though we can’t know what would have happened without intervention). But how do we know what to do looking forward?

relating to “far from the tree”

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I’m pretty new to the autism world, but I’ve had an experience similar to one Angelique describes in this post. It’s hard for me to take the perspective of parents who see their child as “far from the tree.”

For us to accept our son’s diagnosis we had to self-pathologize — we had to learn that others consider certain traits we have and that we love about our son a medical issue. For parents who don’t go through that journey, the medicalization of autism may never be questioned; it’s framed to them as a disease and a problem, and they internalize this framing. As Angelique says about this other parent, “she wants to do what is best for her child, but has been cocooned in the medical world.”

I’m tempted to put in tons of nuances and disclaimers here, but let me start with one. I’m not saying there’s no problem.

I was a child who didn’t talk to the other preschoolers, would go on and on about special interests in “little professor” mode, and all the rest. I was bullied and had no friends, and it was a problem which made me miserable at the time. I would have benefited from help. At the same time, my parents had an exclusively positive perspective on these traits. Intelligence, independence from the crowd, digging deeply into interests, these are all good things. They fought for me to have a better situation at school and when my traits were problematic they blamed others for their inability to adapt and understand. They found countless opportunities for me to build on my strengths, and I did.

Verbal, high-IQ autism did not exist in the minds of doctors and educators when I was a kid, of course, so there was no risk of a label and it didn’t enter anyone’s mind.

So with our son there’s a very difficult process of keeping two things in mind at the same time.

  • First that he does need individualized education, recognizing that he learns systemizable information (such as how to read) almost instantly but has to be explicitly taught how to play with other kids. And the only way to get that education, right now, is through an essentially medical process of diagnosis and insurance filings.
  • Second that he is just fine, awesome, and not “broken” or “diseased.”

The human mind has a lot of trouble with this kind of thing. If we use a conceptual framework such as “diagnosis” and “disease,” then our brain automatically and without conscious decision pulls in a bunch of implications that go with that framework. For autism and disease, many of these implications are wrong:

  • that the condition is unequivocally “bad”
  • that there’s a cure
  • that the cure is “medical” in nature (drugs, diet, etc.)
  • that the condition is binary (have it or don’t) rather than dimensional (have a degree of it)
  • that working with a person is “therapy” rather than “education”
  • that it’s a single condition rather than a trait or symptom (with many causes)

It’s sort of like saying that variation in personality or in IQ counts as a disease; those things may be related to some diseases, and they may create problems that make people unhappy, but they are not by themselves diseases. They are traits.

Right now we have health insurance paying for our son to practice pretend play, conversation, etc. for hours every day, and it’s making a huge difference for him — what could be better than seeing him have a ton of fun running around the house with a friend? We finally had a chance to see that the other day.

I’m grateful that the world considers autism a medical problem in that it gets him this education he needs. However, in my mind this is a fiction to get services, only needed because our educational system sucks at individualization.

I think it took me until middle school or so to even notice that I didn’t have any friends, so I missed years of opportunity to practice social skills. That’s why we’re pushing my son to work hard and learn skills he doesn’t naturally go for.  Soon, though, I think we have to switch to emphasizing his strengths; nobody succeeds on the basis of mitigating weaknesses. It’s very hard to think about this… I’m not sure how to balance helping him avoid some of my own struggles, while helping him appreciate his own strengths.

Let me mention another disclaimer. There’s plenty of evidence that some autisms co-occur with or share a cause with truly medical issues: seizures, tuberous sclerosis, or perhaps many others — the research is not there yet. Many children with autism have medical issues which may share a root cause with autism, or may cause them discomfort contributing to problematic behavior.

I do, however, strongly question that the autism diagnostic criteria by themselves are a disease; plenty of adults who meet those criteria have been very happy and have made huge contributions to society, especially in intellectual fields, not in spite of but rather because of autistic traits.

That’s why I feel bad meeting parents who are confused and sad about their child, perhaps looking for a magic pill or diet, when their child’s traits may be more like a quirky personality than a disease, and their child may have many strengths to build on. I don’t quite know what to say. I’m not angry at them; it’s very hard to be a parent. Some of them may also be quite right that their child has an underlying medical problem, and of course some children will be significantly disabled for life. But it isn’t true just because of an autism diagnosis. We have to know our individual children.

Often I want to find a way to tell someone, without making them defensive, that I know lots of people with autistic traits who are very happy and successful. That I was a kid who didn’t really ever have proper friends in school, but it’s OK. That they don’t have to feel quite so bad. But of course I’m not very good at delicate conversations like that!

Let’s make autism research more useful

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Every day there’s a “something correlates with autism” story; Emily Willingham just did a roundup of weird ones. When I first started to learn about autism, it took no time to realize that these aren’t very helpful. I wish researchers would focus elsewhere, and some already are.

Here are two studies (these happened to pop up today) that did better:

I didn’t dig in on these studies in detail, the point is that their reported findings are much more informative than they would be if they were simply “autism correlated with motor skill impairments” or “autism correlated with de novo mutations.” They go a level deeper and attempt to look at dimensions within autism.

Here’s what’s wrong with a “correlate autism with X” study.

Plenty of evidence seems to support the idea that autism is more like a trait or symptom than a disease. Some people seem to experience autism primarily as sensory differences; others as a different kind of thinking (perhaps in pictures, or in explicit, intellectualized fashion); others emphasize medical issues such as seizures or tuberous sclerosis with autism as an effect. Sometimes autism comes with intellectual disability, other times it doesn’t. It may or may not imply motor deficits. On and on — there are so many differences. We’ve put all kinds of people and experiences together and said: these people have a brain focused on something besides social interaction, and that’s what’s most important about them.

We need to view this grouping as contingent and pragmatic, to be used when it makes sense. If we’re asking, “should we be concerned about this person’s ability to make friends and navigate social situations in daily life?” then the broad “autism” label is appropriate, because it’s defined by something close to that question.

But if we’re asking, “what specific education or accommodation does this person need?” or “what strengths might this person have to build on?” or “do we expect problems other than the core social deficits?” or “what causes autism?” … any practical question, really … we need more specific ways to group and understand people. Just “autism” tells us little, and may even be actively misleading.

“Autism” has a crude yes-or-no quality. If someone is just outside the autism range on the usual autism assessments, are their social skills perfect or might they benefit from extra help in those areas?

What could researchers do to improve?

  1. Measure autism dimensionally … continuing those measures outside the official spectrum. See if the variable you’re looking at also relates to more-autism-like but not-quite-diagnosable “neurotypicals,” for example.
  2. Measure separate aspects of autism separately. Some research suggests that sensory issues and social issues may not be strongly related, for example.
  3. Look for relationships among those variables which aren’t part of the autism diagnosis, but crop up often in autistic persons. Motor skills differences; language differences; picture-thinkers and word-fact thinkers; attention-seeking behavior; verbal vs. non-verbal; presence of medical issues such as seizures.
  4. Some studies have tried to find commonality in “responders” and “non-responders” to intervention; those are great studies! Which people benefit from which kinds of help?

“Autism correlates with X” research really falls over when it comes to debates about the DSM criteria. How are we supposed to improve the criteria by finding things that correlate with the current criteria? Circular and nonsensical.

In the end, a yes-or-no on autism isn’t enough.  We need to describe a person more specifically, including their strengths, and then list social deficits or repetitive behaviors as one aspect of whatever’s going on with that person. Once we understand autism, it probably goes away as a diagnosis and returns as a trait (one associated with certain diseases, perhaps, but perhaps also arising from certain strengths).

There’s plenty of anecdata out there about kinds of people with autism; picture-thinkers, “little professors,” memorization-loving hyperlexics, lovers of sensory experience. It’s time to try understanding these differences in earnest.

Take the study I linked to earlier, reporting that de novo mutations only correlate with autism with intellectual disability? If that turns out to be true, does it mean that some autisms with and without intellectual disability have distinct causes? It’s a fascinating clue.