The father of nonverbal autistic child believes videos constitute proof that other children with autism can communicate by by pointing to letters on a board held by a facilitator to spell out words. He is wrong.
I get a lot of email inquiries about questionable treatments, and when I explain that there is little or no science behind them, my explanation is usually accepted with thanks. Recently I had a different experience: the inquirer wanted to argue with me. The father of a non-verbal autistic son, he had watched videos for Spelling to Communicate (S2C) and he believed they constituted proof that S2C worked.
In the S2C program, autistic children who don’t communicate verbally are taught to communicate by pointing to letters on a board held by a facilitator. I answered the email inquiry with a link to what Steven Novella had written about it, where he pointed out that this was just a new version of facilitated communication that was also subject to the ideomotor effect, and there is no evidence that the clients are actually doing the communicating.
The inquiring father begged to differ. He had watched videos where the autistic person had not only learned to communicate by spelling but had demonstrated knowledge that allowed him to beat his family at Trivial Pursuit. I found this hard to accept. Spelling is often difficult for non-autistic people. How could someone with autism be so good at it, and how could they have known information that allowed them to answer Trivial Pursuit questions that other family members could not answer? It simply didn’t make sense to me.
I tried to show him why these videos were not acceptable as evidence. I failed. I pointed out that when S2C didn’t work, no video would be made. I pointed out that videos can be faked; we have no way of knowing if the person is really autistic or is even a real person. How do we know he’s not just an actor? I pointed out that videos were essentially testimonials, which are not acceptable as evidence. I don’t go by testimonials or anecdotes, but by published peer-reviewed scientific studies with appropriate controls. I did everything I could think of to explain the need for good science. He was unimpressed. He had watched the videos and they proved to him beyond any doubt that S2C worked.
He offered to enroll his son in the program and provide me with updates on his progress that would surely convince me. I explained that that would just be more testimonials that couldn’t possibly convince me. He called S2C an evidence-based method that had helped hundreds of people become articulate spellers. He insulted me by saying I had not watched the video (I had!) and that science dissuades people from trying anything new (not true! Science only asks that claims be properly tested, and asks that new treatments be tried in the context of a controlled study to find out whether they work.) We ended up essentially agreeing to disagree.
I felt sorry for him. He could not be objective. He needed to believe his son had a rich mental life that he could learn to share with others. There are plenty of treatments for autism that are evidence-based and have been proven to help; focusing on a bogus treatment may mean denying his son treatments that might really help.
The whole interchange was an exercise in failed communication. We were speaking different languages with different meanings of the words “proof” and “evidence.” What could I have done better? Was I foolish to try to have a discussion with a person who values video testimonials over scientific studies? I ended up wondering why he had asked for my opinion in the first place. What did he expect I was going to say?
This article was originally published in the Science-Based Medicine Blog.