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.