PMean: Misunderstanding autism

A friend of mine posted an inspiring story published in the Washington Post. Unfortunately, it did not inspire me, but rather made me worried about how often we misunderstand autism and how much trouble this causes. It’s not statistics, per se, but rather represents an example of how research on new approaches for patients with autism can end up being abusive.

I should start by stating that I’m not an expert on autism. I have worked with people who are experts, but that does not make me an expert. Still, you don’t have to be an expert on autism to understand the problems with stories like this.

What this article describes is a form of facilitated communication. The short answer, if you don’t want to read this long blog past is that facilitated communication has been shown by carefully controlled research to be a “pseudo science that causes great risk and emotional distress to people with communication disabilities, their families and their caregivers” (https://en.wikipedia.org/wiki/Facilitated_communication).

This is a pattern that I’ve seen. Parents and caregivers for patients with autism have been perpetually abused by those who make false accusations (like the refrigerator mother hypothesis) or who propose dangerous therapies (like chelation treatments). They are falsely told that the autism was caused by childhood vaccinations or by chemicals in their food or their environment. They are offered numerous unproven cures for autism.

There are treatments that do help patients with autism, but they are extremely labor intensive and they show very small gains. Even these small gains mean a lot, of course.

The problem with stories like this is that they promote a false hope. To think that a facilitated communicator could take a low functioning autism patient and suddenly produce brilliant and thoughtful essays with only minor effort is a cruel hoax. Read the story carefully and you can get some clues. This patient, through facilitated communication tells us when the Washington Post was founded. Not just the year, but down to the exact day.

There are examples of people who are nonverbal but who can communicate through a keyboard. Stephen Hawking is the most famous example, of course. There are examples of people who were conscious and aware of their surroundings even though they appeared to be in a coma. So anything is possible. And if this article gets us to look at nonverbal patients with a more open mind, that is actually good.

When a patient needs the assistance of an outsider, however, the most common explanation is the ideomotor effect. The outsider subtly and unconsciously controls the communication process. It is not unlike how a Ouija board works. We know this because when the patient is asked a question that the patient knows the answer to, but the outsider has been fed the wrong answer (like the name of their pet dog), the answer provided by facilitated communication is always the wrong answer.

We have a romanticized notion of autism through books like “The Curious Incident of the Dog in the Nighttime” and movies like “Rainman”. While these might be accurate portrayals of some autistic patients, there are many more who just shriek uncontrollably or bang their heads incessantly against the wall. It does no good to pretend that patients are something that they are not.

I have to end with a story that I hope I can convey accurately. I was working with a doctor who was looking at chelation therapy for patients with autism. This was a difficult study to do. Chelation therapy, although it is used widely as a pseudo-scientific treatment for autism, carries significant risks. The study involved a single course of chelation followed by an analysis of heavy metals in a post-treatment urine sample. The purpose of chelation is to remove the heavy metals like mercury and lead that have been proposed by some fringe groups as a cause of autism.

So the doctor was talking with one of the parents who participated in the study and told her “We have good news. There were no heavy metals found in your child’s urine.” The parent immediately burst into tears. She was hoping that this study would provide an answer for why her child had autism.

It made me realize that parents and caregivers of patients with autism are a vulnerable population. Don’t misunderstand that word. It does not imply that they are weak. In fact the opposite is true. What “vulnerable” means here is that that these parents have been frequently abused by misguided researchers.

So we need to be very careful with stories like this. It may be a miracle, an inspiring story that helps us look at nonverbal patients with a new and different perspective. But sadly, the far more likely answer is that this story something worse, one more abuse in a long chain of misguided research that has plagued these parents for decades.