Saturday, November 9, 2013
An Open Letter to Temple Grandin About Holding Therapy for Autism
Dear Dr. Grandin:
I am writing to ask you to retract or correct a statement you made more than twenty years ago, a statement that I believe has had the unfortunate effect of helping to continue the use of holding therapy as a treatment for autistic children.
In 1992, you published in the Journal of Child and Adolescent Psychopharmacology (2), an article entitled “Calming effects of deep touch pressure in patients with autistic disorder, college students, and animals” (on line at www.grandin.com/inc/squeeze.html). In this article, you described your own gratification with the use of your “squeeze machine”. You also spoke approvingly of the holding therapy for autistic children recommended by Martha Welch in her book Holding Time, and because you were and are a respected figure in the community of people concerned with autism, this approval no doubt carried a good deal of weight. You did not mention a point that many have made since then: that there is a world of difference between choosing to be “squeezed” in a machine that you can control, and being physically restrained and shouted at without being able to control the beginning or end of the experience. Holding therapy, as performed by Martha Welch, Jirina Prekopova, and others, presents the latter situation.
Many changes and revelations have occurred since 1992. The use of holding therapy has never been shown to be an effective treatment for autism, despite some of the efforts of Prekopova and her German colleagues in the 1980s. Practitioners of holding therapy, including Welch, have gradually come to say that they are treating Reactive Attachment Disorder or oppositional disorders rather than autism. Deaths and injuries from holding therapy have been publicized.
A small number of adults have come forward to tell of their distress during their treatment for autism using holding therapy. One of these, a British man whom I will call Walter, has e-mailed me describing his disturbing memories of the treatment for autism he received in the 1980s, memories on account of which he is being evaluated for Post-Traumatic Stress Disorder. In talking about his treatment by a therapist in the north of England, he said: “The first holding session was in her room when we went to [town] to see her. It was lying side by side, me in the middle facing my mum. Then at home my mam was on top of me holding my arms, in the hands-up position while I lay on my back, but she never had her weight on top of me. I know its not as bad as what I saw in the videos of Jirina with a mother lying on top of her boy and even shaking his head, but it was bad enough for me with being uncomfortable with forced touch, and having no freedom to scratch an itch or wipe my eyes during crying. As a child with unknown autism and aspergers syndrome, I had insufficient vocabulary to explain my way out of this and felt trapped as to why I reacted the way I did, so it felt horrible for a therapist to watch telling me I’m angry all the time, it felt like she was playing with my emotions as well. “ In another e-mail, Walter said, “Communication is harder for autistic children and also with aspergers, and when in a [holding therapy] position, it must be a bit like someone has had a stroke and knowing what they want to say but just can’t get it out, that was how I felt. It was that feeling of how do I tell my mum not to, or that she can’t hug or touch me because it hurts without taking it the wrong way or thinking I’m being silly…” Walter’s father put a stop to his holding therapy treatment after four sessions, and Walter comments, “I recently sat and explained to my parents that this therapy was like me being abused while this lady sat and watched me in a emotional state, and they are now so sorry that this had happened and now see how traumatic it really was, and unlike what it said in the book about the parents not being tempted to feel sorry or guilty of it, well my parents did because they loved me so much regardless of the way I was. I broke down and cried when I told them this, and my mam came over to me sitting in the chair and, pleaded with her not to touch me, and she didn’t as she now understands I am touch sensitive, which is quite common among autistics.”
Walter’s treatment occurred many years ago, and it would be easy to assume that no such practice exists today. Perhaps you, Dr. Grandin, have assumed that the use of this method of treating autistic people had gradually vanished. However, it is very clear that in the Czech Republic Jirina Prekopova and her followers continue to do holding therapy and have much popular support (as well as considerable professional antagonism). In 2006, Henry Massie, writing in the newsletter of the Northern California Regional Organization of Child and Adolescent Psychiatry, described holding therapy as “a new, effective psychosocial treatment for autism”. He referred to the use of the method at the Mifne Center in Israel. In 2006, Stella Acquarone recommended the method in her book Signs of autism in infants (published by Karnac). Acquarine appears to be describing holding for regulatory purposes at www.youtube.com/watch?v=Q1MwRuHhdIE.
And, of course, your 1992 statement remains on the Internet and provides support for this non-evidence-based, implausible, potentially harmful treatment. I hope that Walter’s description of his experience and its aftermath will persuade you finally to speak out against holding therapy, and to put your great influence to work against this and other wrongly-conceived treatments for autism.
Jean Mercer, Ph.D.