1/18/2010

Point: What relationship should researchers have with the autistic community?

One of the most important questions psychology researchers can ask themselves is: "what role should the experience of my subjects play in my research? What responsibility do we have to the subjects we study, in choosing our research topics and in reporting them?" Scientists are often suspicious of "anecdotal" evidence and subjects' self-reports, since after all, subjects aren't scientists and can't see into the workings of their own minds. Yet if we fail to take into account their perceptions of their own condition, we risk doing research that is useless and unhelpful to the very people we hope some day to serve.

In her Psychology Today blog, Lynne Soraya found herself frustrated with a recent Kennedy Krieger Institute study that showed that children with autistic spectrum disorders often have poor handwriting. As she pointed out, adults with ASD and parents of autistic kids have made the same observation for years.

She responds:
There is a world of autistic people out there eager to share their experiences with the world. To understand why they have synesthesia, or prosopagnosia. Why they they have trouble with speech. Why they struggle to make friends and have jobs. Why life sometimes feels so hard...
The information is out there...but it seems they are just not listening. While the media and experts are patting themselves on the back over "discovering" a new bit of information about autism, there are kids out there struggling. There are adults like me, frustrated. Wanting to learn about why we are the way we are - but left out in the cold.
Autism should not be a researcher's "pet project." Autistic people should not be used as a pawn to prove someone's theory about how "normal people" see and interpret the world. And, it might be worthwhile, every now and again, to ask a person on the spectrum before pronouncing opinions, or posting speculations about us -- how we think, or why we do things. Some of us do speak...and we can tell you.
We might just have a perspective that you might not have thought of...and we are the ones who have to live with the results if you're wrong. If you want to know what research matters, ask a person with autism. Ask a parent. Ask a professional that works with us every day. Ask someone who knows. We'll tell you.
There are two problems with this argument. First, it suggests that only research that autistic people and parents of autistic children can understand is worth carrying out. Unfortunately, basic science must sometimes precede applicable results. In medicine, many boring experiments with animals, neurotransmitters, and chemical compounds must be done before useful drugs can be developed. Many of these studies have incomprehensible titles based on the interaction between very specific chemical compounds. Patients might look at the titles and say, "so what?" Yet without such highly specific and technical studies, drugs could not be developed.

Similarly, we need to know what autism is neurologically as well as behaviorally before we can come up with tests for it, develop drugs for it, or develop targeted therapeutic measures. Different causes of autism imply a need for different methods of diagnosis and treatment.

If autism is caused by several auditory and visual processing problems leading to dyspraxia and inability to perceive many social cues, then clinicians should emphasize sensory processing tests and therapy should focus on training perception (followed by helping the patient brush up on the social and motor skills they missed).

If autism is fundamentally an information-processing disorder caused by overly profuse and faulty connections or inability of the brainstem to regulate sensory input and attention, identification might require fMRI connectivity scans and therapy might train attention.

If autism is fundamentally a problem with the emotional and face processing systems, including the amygdala, prefrontal cortex, and fusiform face area, autism can be diagnosed by eye-tracking studies (i.e., do they look at the face and eyes normally?) and fMRI activation. Therapy might focus on developing face-reading, emotional perception, and emotional intelligence.

If a chemical imbalance causes autism as it seems to in depression and anxiety, drugs might be a promising treatment. If specific genes cause autism, then targeting the specific genes might make more sense. Other possible causes might have still other implications for diagnosis and treatment of autism.

Right now, we don't have a science; clinicians do what seems to work, but many of them don't really seem to know what they're doing and why they're doing it. They may have theories, but these theories amount to either pseudoscience verging on mysticism or "it works in all these (anecdotal) cases, therefore let's apply it." That's not good enough. Before we can develop appropriate diagnoses and treatment for autism, with a real scientific basis, we have to understand how autism works and how it develops. And many of these studies will be highly technical, focus on arcane brain areas or cognitive functions, and seem irrelevant to most laypeople.

Autistic people know better than anyone else what it is like to have autism. They know what it feels like and how it impacts their lives. That does not mean that their theories about the causes of autism are correct. Autistic people do not have any more insight into the workings of their brains than the rest of us have, and countless psychology studies indicate that we do not understand or predict our own behavior very well.
Just because your symptoms improve when you have a fever or stop eating gluten does not mean that an immune system defect or a gluten allergy necessarily caused your autism (although it's possible). Maybe it helps treat the symptoms but has nothing to do with the cause. Maybe it's a complete coincidence. Autistic people often have sensory processing difficulties. Does this cause their autism? Maybe, but what about the equally vocal group of autistic people who swear they don't have any sensory processing problems? Are they just not aware of how they compare to nonautistic people, or are they correct about themselves? And would co-occurence really imply causation? Maybe, maybe not. That's what scientific studies are for.
This is not to say that we should ignore what autistic people say about themselves, or what parents say about their autistic kids. What autism feels like is as much a characteristic of this condition as the more observable traits on a standardized autism test. If we don't know what autism feels like, we don't really understand it. Thus, self-reports should be a source of hypotheses for researchers. If many autistic people say they have certain sensory processing problems, researchers should test for those. (They may or may not find a causal link, of course).

Lynne Soraya is right that we have a responsibility to listen to autistic people and parents of autistic kids, and do research that will eventually lead to helping them. However, that does not mean that they will always be right.

2 comments:

  1. Emily:
    Thanks for the commentary, but I have to make some clarifications here...

    "There are two problems with this argument. First, it suggests that only research that autistic people and parents of autistic children can understand is worth carrying out. Unfortunately, basic science must sometimes proceed applicable results."

    First, I do not suggest limiting research only to subjects that autistic adults/parents understand - but rather taking your cue, as a researcher, from the types of issues that are most troublesome to the patient. (Which, it sounds from your posts, is your aim as a researcher.)

    If it is your aim to truly make an impact in the community that you are serving, then this seems common sense to me.

    My issue with this particular study was more how it was promoted in the media... As you say, sometimes "basic science" is necessary to lay the groundwork for the truly groundbreaking discoveries and, in my view, this is what that research was. Preliminary research is preliminary research - and should be treated as such. Not as the second coming.

    I am all for Kennedy Krieger (and other researchers) building on these results to the next step...finding out WHY such issues exist. THAT is what in my mind would truly be newsworthy. Something that could actually be used in the real world.

    Second, please do not lump me in with those who think anecdotal information is evidence in and of itself. I am not. The reason I follow the research is precisely because I believe in it...research is sorely needed. The only way we will ever be able to provide reliable information to parents, caregivers, and those of us living with an ASD is to truly verify what works.

    But, the fact is that the research is carried out by human beings. Human beings with their own biases, and predispositions. While we'd like to think that those do not have a bearing in the results...ultimately, it does.

    In an ideal world, researchers would have the clear lens to see when their premise is flawed, or when their hypothesis has been disproved. And they would be willing to acknowledge that. Unfortunately, I've seen too many examples in which that was not the case.

    Autistic adults have had to bear the results of these errors and mistakes for much of their lives. It directly impacts how we are treated. So, yes, I hold researchers accountable for how they present us.

    If research is being done on how autistic people think...you bet we have something to add...see as a case in point:
    http://www.psychologytoday.com/blog/aspergers-diary/200811/joe-and-the-mega-sized-smoothie-language-and-aspergers

    All in all, I don't think you and I are far apart in thinking. The thrust of my point is exactly as you've written:

    "If we don't know what autism feels like, we don't really understand the disorder. Thus, self-reports should be a source of hypotheses for researchers."

    However, as a researcher, I hope that you also take note of your own biases...which some of your own writing seems to reflect. For example, you write:

    "First, it suggests that only research that autistic people and parents of autistic children can understand is worth carrying out."

    There is an implicit assumption here - that those of us with autism or parents of those with autism couldn't understand "real research." On that, I beg to differ with you. As you know, one of the diagnostic criteria for Asperger's is normal to above normal IQ.

    Many of us, are in fact, quite intelligent - and fully capable of reading a research paper and understanding it. How do you know that some of the very people of which you speak are not colleagues in the research profession? Or neurologists, or psychologists, or university professors?

    I ask you to think about that...and about how such an assumption might change your perceptions about us...

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  2. Lynne, thanks for clarifying. Sounds like I misunderstood what you were saying.

    I agree that reporters often make way too much out of basic research. I sympathize with them sometimes though, because it can be hard to get across what's significant for people who don't know the technical details without blowing the research out of proportion & as you say, treating it as the second coming.

    What studies have you seen, if any, that you find useful? That get at the "why" question?

    I didn't mean to lump you with people who think anecdotal evidence is the only good evidence. Sorry about that. There are people in the autistic community who do. I myself tend to lean on anecdotal experience more than I should--one reason I'm going into research is to counteract that. :)

    "In an ideal world, researchers would have the clear lens to see when their premise is flawed, or when their hypothesis has been disproved. And they would be willing to acknowledge that. Unfortunately, I've seen too many examples in which that was not the case. Autistic adults have had to bear the results of these errors and mistakes for much of their lives. It directly impacts how we are treated. So, yes, I hold researchers accountable for how they present us."

    Good point. What do you think about how Simon Baron-Cohen presents autism? (Since he's a prominent researcher who sometimes seems to take a negative outsider's perspective).

    Thanks for the link. Seems persuasive to me...

    Many of us, are in fact, quite intelligent - and fully capable of reading a research paper and understanding it. How do you know that some of the very people of which you speak are not colleagues in the research profession? Or neurologists, or psychologists, or university professors?
    There are many well-educated, high-IQ NTs who can't read and understand research papers. They just don't have a good science background, or they haven't taken a lot of psychology classes, or they just couldn't put in all the time and effort it takes to read a really technical paper and understand it. I would assume the same would be true of people in the autistic community. People who didn't study much science or psychology or go into research, and have just discovered that their child has autism, might not understand very technical research topics right away. They might be biased towards very big-picture educational or medical research whose applications are immediately obvious--both because that's what they understand and that's what they need. If I am being condescending towards anyone, it's not people on the spectrum but just "laypeople" in general...whoops...

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