Autism is Not a Disease

Imagine reading an article that started like this:

Did you know that as many as 1 in 80 adults are diagnosed as tall? Although there is no cure for tallness, the symptoms can be managed with appropriate treatment. Traditional tallness treatments include teaching patients to duck when walking through doorways, and how to stretch after getting out of a car.

Pretty silly, right? But that’s how I felt reading an article in the latest issue of the AMTA’s Massage Therapy Journal about working with clients with autism spectrum disorder. As a massage therapist who is on the spectrum myself, and who also treats several clients on the spectrum, I felt the article was deeply flawed in its approach to the topic.

The article starts by examining the wide range of sensory processing issues that many people with ASD face, and discusses how to be sensitive to them. It gives advice on communicating with clients with autism, especially children, and concludes by discussing the research on the benefits of massage for autistic clients.

But while much of the specific advice is sound, the way the topic is approached is distasteful and counterproductive. I, like many of my friends and clients on the spectrum, rarely find it helpful to think of my condition as an illness or disability in want of a treatment or cure. We see autism as something that makes us different, but not necessarily something that’s “wrong.”

Certainly, when those differences are so extreme as to consistently impair daily functioning — as in the case of children who are nonverbal, or are overwhelmed by common stimuli — they can become pathological, and then it may make sense to think of the condition as an illness or disability. But most of the time, I feel the same way someone might feel who is very tall (or short, or left-handed, or introverted, or otherwise different) — while I may face some problems caused by my differences, many more problems are caused by society’s expectation of conformity, and inability to accommodate diversity.

Massage therapists have worked hard for decades to be taken seriously by the medical community, and one of the ways we have done that is by adopting the vocabulary and concepts of Western medicine. I believe that our profession has benefited substantially from this. However, that doesn’t mean we have to take the bad parts along with the good — just as medical schools today are trying to teach a more holistic approach to medicine, massage therapists too must return to our profession’s core philosophies, and see our clients as more than a collection of neatly named and categorized symptoms.

We must always keep in mind that every client is unique, and every client has distinct needs. There is no “normal” — yes, there are averages, but nobody is actually average on all axes of measurement. Sometimes, a difference can be extreme enough that it’s useful to think of a client as “sick” or “disabled.” But more often than not, pathologizing difference creates distance, and limits our ability to understand our clients as deeply as we ought to.

So, to all the advice given in the article, I would add one more essential piece, something to consider first and foremost, as a framework for incorporating and understanding all the other information. It is simply this: think of ASD in the same way that you think of height, strength, sensitivity to pain, or any other spectrum on which individuals can vary. Continue to adapt your work to the specific needs of each client without worrying about whether those needs are “normal” or not. Give your clients a sense of understanding, belonging, and acceptance.

Once you’ve got that down, the rest is just details.