Jane Goodall meets autism research: When scientists have blinkers on

I've been meaning to write about Jane Goodall for a while, and Brenda Rothman's post on bias in autism research inspired me to finally do so.

When I was a child, my intellectual hero was Jane Goodall.  I wanted to be her when I grew up.

I didn't realize at the time that Jane Goodall's story is about the biases that prevent scientists from seeing what's in front of them.  Through keen observation, stubbornness, and a supportive mentor, Jane discovered evidence that eventually disproved the scientific community's assumptions about her subjects and overcame their biases.

When Jane started her fieldwork observing wild chimpanzees in the 1960's, she experienced culture shock.  She didn't know she wasn't supposed to give the chimps names rather than numbers, ascribe different personalities to different individuals, or describe them as experiencing emotions like grief or jealousy--until she tried to present her work to other academics.  

Academics believed that it was unscientific to "anthropomorphize" animals.  To them, "anthropomorphizing" meant interpreting animals' behavior using any mental concepts at all--thoughts, emotions, and personality were all off limits.  They assumed that if scientists saw evidence of a mental life in animals' behavior, they must be projecting what they knew about humans onto the animals.  This approach could prevent people from ascribing thoughts and feelings to animals that weren't there.  However, they failed to realize that it could also blind them from seeing ones that were.  Ironically, their ideas about what it meant to be objective prevented them from achieving the accurate picture of reality they sought.

But Jane Goodall knew chimpanzees had personalities as she saw, for example, aggressive and shy ones every day.  She knew they experienced grief because she saw a young chimp able to feed itself die after its mother died. 

Her mentor, Louis Leakey, prevented a furious Jane from fighting a losing battle with the scientific establishment.  He suggested diplomacy in her writing, saying things like "as if Fifi were jealous" rather than "Fifi was jealous."  He also advised her to ignore the critics for the time being and focus on building up data.  

Pretty soon, she was observing all sorts of behavior then believed to be unique to humans.  She saw one group "making war" against another, attacking (mostly male) members of the other group one member at a time and then leaving them to die of their wounds.  She saw female chimps attacking new mothers and taking their babies, and sometimes eating them.  She also saw two young orphan chimps adopted by totally unrelated males who had also lost their mothers--a level of altruism only humans were believed to possess.
The ace in the hole, though, was when she observed two chimps making tools.  David and Goliath stripped leaves off of stems to make long, thin sticks for scooping termites out of their mounds.  They weren't just finding tools in their environment--they were making and using them.  Jane later noticed that chimpanzees taught younger members of the group how to make tools and predicted that there would be cultural differences in the way far-flung groups of chimpanzees made tools--a prediction which turned out to be correct, and which I read about in the newspaper when I was a child.

Now that most educated people accept that chimpanzees and several other species use tools, it's hard to explain how revolutionary the finding seemed at the time.  Jane Goodall's mentor, Louis Leakey, wrote as soon as he heard, "Now we must redefine 'tool,' redefine 'man,' or accept chimpanzees as humans."

Today, Jane Goodall's discoveries don't seem like as big a deal, because she won.  After much debate, scientists accepted that chimpanzees make tools and have at least "basic" emotions (i.e., happiness, fear, anger, sadness, disgust, surprise).  Most educated people now accept these facts, too.  As a result, scientists are no longer so blinded by their ideas of how to be objective that they can't see the evidence in front of them--at least, not when it comes to animal intelligence*.

When it comes to humans, though--especially autistic humans--we still have a long way to go. We still see what we expect to see.  

Some researchers design studies with the pre-existing expectation that autistic people lack a "social brain"--the ability to understand their own minds and feelings or those of others'.  Of course, if you assume something isn't there, you won't find it--but that doesn't mean it isn't there.  Those scientists who are already questioning the "social module" theory are facing stiff opposition, just as Jane Goodall did.  But I expect that one of them will, like Jane Goodall, find a piece of evidence that's a smoking gun.  Eventually, the predominant scientific view of autism and DSM definition for it will seem as backward as when homosexuality was classified as a mental illness.

There's one more important similarity.  Scientists never questioned their assumptions that animals lacked a mental life because they never had enough exposure to animals outside of an artificial setting to see what they were really like.  If other researchers had actually gone out into the wild and observed chimpanzees 24 hours a day, 7 days a week, they could have observed the same things Jane Goodall did.  Similarly, those researchers without an autistic family member only see autistic people for brief periods of time in highly artificial settings--and remember, most researchers don't actually run their own studies, so they may never see autistic people at all.  Unlike with chimps, they can't follow a few autistic people day in and day out writing down everything they say and do, as this would be unethical.  But they can start doing studies in schools and workplaces.  And even more importantly, they can listen.

*And she's still making the world better by working to save chimpanzees and their habitat.

A confusing question: "What about typically developing kids?"

When I applied to graduate school in fall/winter 2012, one of the professors I hoped to work with asked me, "Are you also interested in working with typically developing children?"  The intention behind this question was probably simple: "All of your research interests concern some sort of atypically developing children.  Are you willing and able to work on our studies that involve only typically developing children, or will you get bored and do lackluster work?"  However, I sensed some assumptions behind the question--ones she may or may not have actually intended--that seem worth discussing.  Specifically: if you're a researcher primarily interested in atypical development, should you do at least some studies just on typical development?

Even if you study nothing but atypical populations (e.g., autism), you will be studying typically developing kids nearly all the time, because they almost always make up the comparison group.  (Occasionally studies of autism will only include kids with intellectual disability or ADHD as a control group, but studies like these without typically developing kids are quite rare).  So, whether or not you're interested in typically developing kids, you're studying them by default.

Since I've worked in developmental labs or conducted developmental studies for over five years, I know this well.  I suppose part of the point of asking the question was to make sure that I knew this, as prospective graduate students can have unrealistic expectations about all sorts of things.  But I digress.

Fortunately, typically developing kids interest me, I enjoy working with them, and look for every opportunity to do so.  It just doesn't follow that interest in atypically developing kids means a lack of interest in typically developing ones; if anything, I've argued here that they're more similar than many researchers believe.  So, I like that any study I would want to run includes typically developing kids by default.

But what made the question hard to answer was that I sensed that simply running studies with typically developing control groups isn't considered enough.  You have to also run studies with just typically developing kids.  But why?

Developmental psychology is a huge field full of brilliant people doing fascinating work.  The average layperson may even know some of the big names, such as Rene Baillargeon or Alison Gopnik, who describe their work in the popular press.  Honestly, developmental psychology does not need a new person hoping to make creative contributions.  Yet another smart person can't offer that much, as they'll amount to just another drop in a very full bucket.  However, atypical development research not only is a smaller field to begin with, but also desperately needs more rigor and fresh ideas.  Anyone who's read Cracking the Enigma or The Autism Crisis realizes how much autism research needs new approaches, and compared to research on intellectual giftedness, autism research looks rigorous.  As a new person entering the field and hoping to make creative discoveries, I'm more likely to actually make a meaningful contribution by studying atypical development.

Not only can one make more of a difference intellectually by researching atypical development--one also has a better chance of "repairing the world" in small ways.  Insights from research on typical child development do inform education.  However, whether because of or despite their education, most typically developing kids come out of their schooling functioning just fine academically and emotionally.  Not so with atypical populations; kids with autism or learning disabilities struggle with education that rarely accommodates their needs while still challenging them.  And heaven forbid they should actually be intellectually gifted; then no public, private, or homeschooling option will quite fit them.  Looking beyond the educational world, atypically developing people face constant misinterpretations of their behavior as "rude" or "lazy" should they try to pass as normal, and degrading stereotypes if they reveal their diagnosis. Many people still think that autistic people lack emotions or concern for others or that people with ADHD can't ever pay attention, even though those affected and their families--and some researchers and clinicians--know better.  And autistic, ADHD, and gifted people share one commonality: they vanish from discussion along with needed services in adulthood; it's as if people think they disappear as soon as they turn 18.

While this may be my youth and idealism speaking, I think that as the most reliable source of truth, scientific research could help dispel some of these harmful myths and create understanding and awareness of adults who currently "drop off the map."  Again, if you have a choice between yet another study on how typically developing kids learn about words or numbers and this, why would you ever choose the former?

I imagine some people will say that one can't understand what differs in atypical development without understanding typical development well.  Of course I agree with this to some extent; that's why we use typically developing comparison groups and why we must learn and cite the literature on typically developing kids.

But I wonder if one could learn even more about typical development by understanding what happens in atypical development.  After all, in normal development everything develops at similar rates at roughly the same time; no huge gaps between abilities exist; and when all the subskills needed for an ability like, say, language, work fine, it's harder to tell what subskills might be involved.  If you want to understand how an ability like language works, you need to see all the ways it can go wrong.  If you want to understand how people's language and spatial abilities relate to each other, you need to study people with large gaps between the two.  And if you want to know whether learning words teaches us concepts or vice versa, you'd better find people whose verbal learning and concept learning develop at different rates (e.g., nonverbal autistic kids, some of whom demonstrate their intelligence by using the few words they know in highly abstract and creative ways).

We've already learned much about language by studying people with brain damage.  We've learned a lot about vision by presenting visual illusions to people (because processing becomes so much more visible when it gives you the wrong answer!).  So why couldn't studying specific learning disabilities, or autism, or ADHD, or sensory processing disorder, or dyspraxia, work in a similar way?

Some researchers appear to assume that research on an atypical population only matters if it teaches us something about neurotypical people.  I think the best research gives us the most information, so I prefer research that helps us understand both atypical and typical development.  The only reason studies just on an atypical population should matter less to people than studies just on typically developing people is that there are more typical people, so more people benefit from the latter.  But that's an issue of how to allocate limited research funding, not a reason for researchers to judge each other.  

In short: as much as I love typically developing kids, I primarily want to study atypical development.  That's what I have ideas about, that's what I'm passionate about, and that's where I can do the most good.  Moreover, I don't think that focusing on atypical development should be considered any less legitimate than focusing on typical development.

Am I reading too much into this question, detecting assumptions that that particular questioner may not have intended?  If I get this question in the future, should I address these issues (after addressing the major concern behind it, of course), or ignore them?

What counts as an optimal outcome when autism is involved?

The blogosphere has been abuzz with the news that a minority of correctly-diagnosed autistic preschoolers may grow up to no longer meet threshold for autism symptoms as adolescents or adults.  In short: they started out obviously autistic as kids (though with milder "social reciprocity" symptoms than similar kids who kept their symptoms)--but no longer looked autistic as adults.  The authors call this an "optimal outcome."  (They don't call it "recovery," although an accompanying editorial in the same journal does).

But, was this really an "optimal outcome?"  Let's unpack this study (link goes to PDF) and figure out what these people were actually like once they lost their autism symptoms.  What exactly do the authors consider to be an "optimal outcome," and should we agree with them?

You'll probably notice that, even though participants were adolescents and adults with largely above-average IQ and good verbal ability, the researchers did not bother to ask for their input.  Self-report measures could easily have been included alongside all the parent and clinician-based ones, and would have added a lot of information about subtler aspects of functioning that the study didn't address.

1) Let's get the obvious out of the way: the optimal outcome group no longer met criteria for an autism label, based on the DSM criteria and based on the "gold standard" diagnostic test, the Autism Diagnostic Observation Schedule (ADOS, Lord et al 2000).  They went through countless measures to make sure both that the initial autism diagnosis was accurate and that the later non-diagnosis was, too.  Arguably, for people who no longer meet threshold because they have learned to compensate, but have the same underlying difficulties, losing this label could be a mixed blessing at best, as Emily Willingham points out.  The study did not investigate whether losing the autism label helped or hurt these people as they were simply trying to establish that they lost the label; this would be a great topic for a follow-up.

1.5) Optimal outcome participants could not be receiving special education services to address autism-specific deficits.  I think the authors assumed this would imply that symptoms had disappeared enough that participants no longer needed these services.  However, an adolescent or adult could not be getting services for other reasons--such as lack of money or lack of services in the area for these age groups.

2) "Optimal outcome" groups really did seem to learn a number of skills, performing at the level of typically developing people on socialization, communication, face recognition, and most language measures.  These included: ADOS Socialization and Communication subtests; Vineland Adaptive Behavior Scale (VABS) Socialization, Communication, and Daily Living Skills subtests; Social Communication Questionnaire (completed by parents), Benton Facial Recognition Test, and Clinical Evaluation of Language Fundamentals (CELF) concepts/following directions, word definitions, formulating sentences, recalling sentences, and word classes subtests.

The ADOS is designed for diagnostic purposes rather than for in-depth evaluation of an individual's functioning, but is often used that way in autism studies.  The VABS is a standard test of functioning in a variety of areas used in many studies with neurodiverse groups (autism, ADHD, Sensory Processing Disorder, etc.).  The CELF is one of the standard language tests used, broken down into many specific areas of functioning.  I'm less familiar with the SCQ and the Benton Facial Recognition Test, but I've seen them in a lot of studies and as far as I know, they're standard measures.

The "optimal outcome" group still had difficulties with one skill: 8.8% of the optimal outcome group still had trouble recognizing faces, scoring in the below-average range.  Another exception: on the VABS test of daily living skills (e.g., self-care--grooming, feeding and cleaning up after oneeself, etc.), 15% of the optimal outcome group had low scores. However, this was not judged to be significant as 12% of the typically developing people did, too.

3) On a less formal note, to be included in the study, optimal outcome individuals had to have typically developing friends.  Some might interpret this criterion as implying that only typically developing friends are worth having or that typically developing friends are better for autistic people than other autistic or atypical people.  That may follow, but I don't think it's what the authors meant.  I think they were trying to ensure that "optimum outcome" groups had the skills necessary to make and keep typically developing friends.  Since we don't all have the good fortune to spend our days around people exactly like ourselves, being able to befriend typically developing people could potentially help autistic people--even if their best, most supportive friends are other autistics.

4) Participants had to perform well enough in school to be in regular education classrooms without one-on-one assistance.  However, they could receive limited special education services or psychological support for things like attention or academic difficulties.  In short, they could be performing fairly well, but still struggling to do so.  In my mind, this is a good thing, but not necessarily what autistic people themselves aspire to or what parents want for their children.  In other words, not an optimal outcome.

5) The researchers considered subthreshold social and communication disabilities, not in a real-life context, but by examining the ADOS results with a fine-toothed comb.  Thus, we know very little about how the "optimal outcome" participants functioned socially in real life.  The researchers looked at items concerning eye contact, gesture, and facial expressiveness.  Over a fifth of the optimal outcome participants (7/34) had slight impairment in expressive nonverbal communication--either facial expressiveness, gesture, or eye contact.  Unlike an additional five potential participants who were rejected from the "optimal outcome" group, these participants' mild difficulties were judged to be caused by "inhibition, anxiety, depression, inattention and impulsivity, embarrassment, or hostility" rather than autism.  The authors do not elaborate on how they made this decision.

6) That 20% of the "optimal outcome" group appeared to exhibit "inhibition, anxiety, depression, inattention, impulsivity, embarrassment, or hostility" already indicates that even without autism, these were not happy, typically-developing children.  The authors did not rule out or even measure the rates of other learning disabilities, ADHD, or emotional problems.  Yet all of these lead to poorer outcomes in both kids and adults--lower education levels, more employment difficulties, more substance abuse, greater risk of suicide, less self-confidence and happiness.

The Autistic Self Advocacy Network (ASAN) argues that it's more optimal to be a happy autistic person with persistent social difficulties than a depressed, suicidal one who happens to have good social communication skills and typically developing friends.  Arguably, there's some relationship between getting along with others and happiness, and the true optimal outcome would involve both happiness and skill development, but they have a point.

When I think of an optimal outcome, I don't imagine unhappy teenagers and adults with academic difficulties.
Optimalitiy isn't just about learning new skills or losing a diagnostic label, it's about quality of life.

Not all researchers make the same mistakes as Fein's team, by the way.  Catherine Lord is also troubled by the emotional problems seen in 20% of the optimal outcome group.  She points out that the social and communication skillls measured may not be the ones important for real-life social relationships, and that obviously autistic people can have happy, productive lives without losing either their symptoms or their diagnosis.

Sometimes you learn as much from the questions people don't ask and the measures they don't take as from what they do.  It's disheartening to see what low aspirations some researchers have for autistic people.

Loaded Words: Why Talking about "Recovery" and "Cure" Confuses the Real Issue

recent study found a subgroup of children and adults who met criteria for autism before age 5 but no longer had the necessary symptoms for diagnosis.  Furthermore, this group did not differ from typically developing people in social interaction and communication or on most language subtests measured, and most did not differ in face recognition ability. Of note, these were not the most mildly affected autistic people examined; while they functioned somewhat better socially early on, they had equally extreme communication deficits and repetitive behaviors.  The authors dubbed this the "optimal outcome group," the New York Times picked up the story, and before long, even researchers in respected journals were intimating that "recovery" from autism might be possible.  Not everyone is happy about this, and predictably, the old debate over whether to "cure" autism flared up.

Words like "recovery" and "cure" naturally provoke arguments because we don't all mean the same thing by them--or by "autism," for that matter.  In such cases, we may have real differences of opinion about what autistic people are like and how they should be treated, but even if we don't, the words make it look as if we do by bringing along baggage.

What is autism?  If we just use the current DSM as a guide, it's a disability characterized by lack of typical reciprocal social behavior; communication deficits; unusual repetitive behaviors; insistence on sameness, and obsessive interests in things or topics.  If we also include research and the lived experience of autistic people and their families, autism also includes motor dysfunction and atypical, often erratic sensory processing.  Notice that autism does not necessarily involve: language disability, general developmental delays, low IQ, seizures, gastrointestinal problems, and food allergies.  A person on the autism spectrum is more likely to have these problems than the average person, but they're not an essential part of autism.  Many with autism don't have any or all of these characteristics.  These traits just come along for the ride; they're what we call "comorbid diagnoses."

That's not how all parents define autism.  A parent who knows no one with autism other than their child in particular likely defines "autism" as their own child's unique package of abilities and disabilities--after all, that's the name they've been given.  Whatever other disabilities their child has--being nonverbal, low IQ, general developmental delays--they lump together with the DSM characteristics, and to them, autism is the whole dysfunctional package.  So when a parent says they want to cure autism, they're not talking about autism proper, they're saying they want their child to be able to speak, stop having meltdowns or self-injurious behavior, and be able to live independently as adults.  When an autistic adult says they don't want to cure autism--speaking, of course, of autism proper as described in the DSM--such parents get confused.  They think autistic adults are arguing against their child learning to speak, and so on (a particularly sophisticated example of this sort of misunderstanding occurs in this Slate article).   Autistic adults similarly think all such parents are trying to cure autism as a whole, including the positive aspects, when a lot of these parents couldn't care less about real autism, they just want their child to develop skills and overcome developmental delays.  Same word, different language.

When you're dealing day to day with a severely disabled child, the question of which is the "real" autism may seem abstruse, a matter for academics.  But it does matter when it comes to questions of what you're trying to cure, and why.

Being nonverbal or having severe language delay is not the same thing as autism.  It isn't even a part of autism.  Not only do many autistic people not have these characteristics, but some people who are nonverbal or severely language-delayed don't have autism.  Consider those with Specific Language Impairment, a severe language deficit that cannot be explained by hearing loss, general developmental delays, autism, or difficulties making the physical movements involved in speech.  They can have difficulty both producing and understanding speech, they start talking late, and their spoken output is extremely limited.

Delays in self-care and daily living skills that worry so many autism parents occur frequently in intellectually disabled people.  Low IQ and global developmental delays can occur in a variety of conditions such as Down Syndrome, Williams Syndrome, Fragile X, and other chromosomal mutations.  People with such intellectual disability are often used as "control groups" in autism studies precisely because they're generally not autistic.

Severe disabilities in IQ, language, and daily living skills are real and can prevent people from living independently and having the ability to participate in many activities at home, school, and in the community.  However, they are not the same thing as autism.

For this reason, I never ask "how autistic" or "how severely autistic" a person is.  If I want to know how they function in general, I might ask, "how severely disabled are they?" or, "what can they do?" or even "what are they like?"  I might ask about a specific, crucial area of functioning, such as "can they talk?" or "are they in mainstream classes?"

I do not support curing autism.  I don't know if it's possible to disentangle the eye for detail, the prodigious memory, and the ability to see things as they are and tell it like it is from the symptoms listed in the DSM.  But, if I could make it so that every person could talk, use the toilet, perform basic self-care skills, and feel no need to injure themselves, I would do it in a heartbeat.

Yes, one can communicate without speaking, and attempts to do so should always be acknowledged and valued, just as speech would be.  Yes, written and signed language convey meaning just as well as spoken language.*  Yes, the way we treat people with profound disabilities makes it even harder for them to participate in the ways they still can.  And of course, people with severe disabilities have feelings and rights that matter, and their lives have value, because they're still human beings.  Some may argue that complete independence should not be the expectation for anyone (I'm not debating the merits of this position here), but being dependent is only a choice if one has alternatives.  Without the ability to do otherwise, it's a sentence forced on one from the outside.  And as empowering as alternative communication methods may be, wouldn't it be even more empowering for them to just be some of the communication methods one can choose from?  No one should ever have to be nonverbal if they don't want to be.  So I support any ethical research or programs that would eliminate these sorts of severe disabilities.

Does that mean I support a cure?  I avoid the word, because of all the baggage it brings along that I don't intend.  But eliminating severe disabilities--making skills available to everyone--is, I think, what many parents want when they say they want a cure.  They may be using the word autism, but they probably don't care about autism, they just want their kid to function now and as an adult.  I think that's what most people on both sides of the "cure" debate want.

Even though most people probably agree on this, the debate over whether to cure autism persists because we use the wrong words; we don't say what we really mean.  So, if we really mean autism, as defined by the DSM (what I call "real autism" or "autism proper"), we should say "autism."  If we mean severe disability, we should say that, and preferably explain what sort of disabilities.  If we mean we want our child to be just like Johnny next door, we should say that.  If we mean we don't care if they're always a little quirky, we just want them to have the skills to do what they want in life, we should say that.  This may sound quixotic, but if we drop the loaded language and say what we truly mean, many of the arguments will disappear, and any that remain will concern not words, but the real issues.

Update 1/26/13:  If you'd like to see the idea of "cure" unpacked by an autistic person, you should read this post by Unstrange Mind.  She similarly talks about the traits in herself she would like to change and the ones she would prefer to keep.  She also raises the issue of what form a cure would take--crucial for deciding whether to support a potential "cure."  Are we talking about a genetic test, like current ones for Down Syndrome, a pill like the medication for bipolar disorder, or something else?

*However, not all means of communication are equally useful.  Language--whether spoken, written or signed--simply conveys emotions and abstract thoughts that pointing at pictures can't.