Let’s make autism research more useful

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.

7 thoughts on “Let’s make autism research more useful

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  5. mosaicofminds

    I really like the points you’re making here.

    What do you think about going a step beyond the studies you mentioned here and looking at the relationship between, say, specific motor skills and social functioning across diagnostic lines? So if you’re looking for various levels of impairment in motor skills, you might recruit not only people with an ASD diagnosis, but also people with developmental coordination disorder/dyspraxia, ADHD, specific language impairment, dyslexia, nonverbal LD’s, sensory processing disorder, etc–all of which have been linked to at least slight motor difficulties. It seems to me, you’d learn something interesting about how strong the relationship is between motor and social functioning in general. You’d also learn how well the relationship applies to people with different diagnostic labels. (Maybe motor delays have led to more serious social problems in people with ASD or language disabilities than people with dyspraxia, for example. Or, maybe there’s no difference, the relationship is equally strong for people with all the diagnoses, and there’s a lot of variability within each diagnostic box). It seems to me, we won’t really be taking the trait perspective you suggest until we stop recruiting along diagnostic lines. What do you think?

    1. intellectualizing Post author

      Yes, absolutely! I don’t think the diagnostic lines should be part of most research designs. Should measure two traits for example and correlate them, rather than correlating one trait with a categorical diagnosis. Can also record and run stats on categories but that needn’t be the main focus.

  6. Birdy175

    Your article is several years old, but it’s still true as ever.

    My son was recently diagnosed with ASD at the age of 2.5 years, a typical age for assessment. At that age, he is able to read the words to a gardening book he’s never seen before as easily as he reads Dr. Seuss. He understands the meaning of the nouns but not the other words he recites (hyperlexia). He uses language in chunks, such as saying, “Cookie is not available” a phrase he’s heard me say (context-appropriate delayed echolalia), while he also struggles putting words together to make his own phrases. He doesn’t have any sensory issues, his tantrums/crying occur at frequency that is normal for a 2-year-old, and he’s demonstrated the ability to recognize the emotions/expressions of others. His fine (handwriting, using utensils) and gross (climbing stairs) motor skills are in a normal range for his age. He has a vocabulary of hundreds of words, almost all objects. I’d say that language is his only issue that needs to be addressed (his referring preschool teacher agrees). Does he have autism? By definition, yes. His repetition of phrases count as “Restrictive Repetitive Behavior,” which is part of the criteria for an autism diagnosis. His back-and-forth communication is delayed along with his language comprehension, which meets the criteria for social-communication deficits. He can’t answer any questions aside from “What’s that?” because he doesn’t understand “where” “who” “why” and other question concepts yet. Similarly, he can’t follow directions yet, such as “give me the chalk.” If he could consistently follow instructions such as “bring your crayons to the table” he’d still be able to attend a regular preschool instead of being referred for special education and an autism evaluation. But he is certainly developmentally delayed in that he can’t speak like his peers yet, who can put together novel, basic sentences such as “Mom is here” and answer “What’s your favorite animal?” He’s still in diapers too.

    As I’ve been trying to learn more about his condition in order to better address his needs, I’ve read many publications on the subject of autism. Few things are helpful because saying a child has autism doesn’t inform me about what his current problems are. The diagnosis doesn’t inform me about what his long-term outlook is or what should be included in his individual education plan (IEP). The usual guidance for autistic children at his age is to introduce them to picture exchange communication (PECS), so they have a means to express what they want (mands) without words. This guidance wasn’t useful for my son, who has quickly learned the word for every item he wants and uses the word instead of grabbing a photo to make a request. “More apple please.”

    Sometimes I wonder if my son doesn’t have a disabling health condition so much as falling on the tail end of when boys normally learn language and toilet training. His cognitive maturity is just later than average. Yet my son meets the criteria for autism. I’m not ashamed or in denial of that fact. When I went to pick him up from special education preschool, next to my son there was a nonverbal child rocking back and forth and shaking his hands while they sat waiting for parents to arrive. I suppose he is classified as Level 3 (needs high supports) while mine is a Level 2 (needs some supports). Both children need therapy, special education, and respect. While both are on the spectrum, their experiences of autism are so different that I don’t see how any research that groups them together would have any useful results. What caused their condition? What supports do they need now, and what will they likely need in the future? What guidance can be offered to their parents? Should my son’s learning of chunks of language (gestalt language) be completely discouraged in favor of focusing on putting individual words together?

    With nearly 2% of all males meeting the criteria of autism, surely some subtypes can be observed with such sheer numbers. Wherever the lines are drawn, there will naturally be some that fall just within and just outside the criteria. But as long as autism remains a catch-all diagnosis, research is not going to be useful with such different probands all thrown together.


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