Holding therapy: an autistic perspective

As a person with an autistic spectrum condition (Asperger syndrome) I was shocked to discover recently that holding therapy is still being used on some children with autism. Patricia Howlin writes as with so many other much publicised treatments, it has now disappeared virtually without trace.

From a research perspective, this is true. But from an autistic perspective, if even one person with autism is still being subjected to holding therapy, that is one too many.

I believe that forced holding is not only not 'therapy', it is a form of abuse.

Many, if not most people with autism (myself included) have tactile defensiveness and/or tactile hypersensitivity. The nervous system seems to overreact to touch, so that a friendly touch is perceived as overwhelming and invasive. In addition, most people with autism are severely distressed by any form of restraint - Bryna Siegel notes cases of people with autism breaking their own bones in their desperation to get out of hospital restraints. To me, holding therapy seems like a form of sensory rape. I have seen photos of children undergoing holding therapy and I can't bear to look at them for more than a few seconds, because the pain and terror on their faces is so strong.

I have read articles in which holding therapy is spoken of in the same breath as Temple Grandin's squeeze machine. To me this seems baffling. The whole point of the squeeze machine is that it allows a person with autism to explore touch and deep pressure in a way which is completely under their control. Grandin writes:

"Being able to control the devise is very important. I had to be able to stop the stimulation when it became too intense. When people hugged me, I stiffened and pulled away to avoid the all-engulfing tidal wave of stimulation ... Lately there has been a lot of publicity about holding therapy, where an autistic child is forcibly held and hugged until he stops resisting. If this had been done to me, I would have found it highly aversive and stressful."

Similarly, holding therapy should not be confused with desensitisation. Some sensory integration therapists believe that it may be possible to reduce tactile defensiveness by gradually exposing a child to touch in a way which is safe and enjoyable for them. Obviously, force has no place in such an approach as it would only increase the child's impression that touch is threatening and unpredictable. It is only possible to learn that touch can be a medium for affection and love if you know that you will be treated with respect, not violence.

Even proponents of holding therapy admit that it causes extreme distress and suffering to the child, but they see this as the key to a miracle cure. However, no evidence has ever been produced to support holding therapy except a few articles by its proponents which have been severely criticised as unscientific and invalid (see Howlin 1998). Bryna Siegel writes:

"When holding therapy first became popularised in the late 1980s, we attempted to study it empirically ... The problem was that when it didn't work, the therapist would simply tell the parents that they weren't doing it often enough ... or that their hearts weren't really in it when they did do it."

In contrast, there is very good reason to believe that it can be extremely damaging and traumatic. Therese Joliffe wrote about her experience of holding therapy:

"To me the suffering was terrible and it achieved nothing. Some people who dislike this treatment argue that the children submit out of exhaustion. I think that this is true in many cases. A claim by proponents of this therapy is that the children are much quieter and better behaved for a little while afterwards. my quietness was due to exhaustion and to my being disturbed so much as a result of the experience that I was shocked into a state of terrified quietness, where I could not think or do anything much for a while."

It is often pointed out that holding therapy is based on the completely false theory that autism results from a failure of mother-child bonding. What is less often noticed is that it also relies on a completely false and dangerous theory of autism itself: that the person is deliberately choosing to reject others and can be forced to be normal. Various researchers into the abuse of children and adults with disabilities have pointed out that particular risk factors for abuse include a normal appearance and the mistaken belief that a person is deliberately choosing to behave badly. Parents and carers turn the exhaustion and frustration that comes from day-to-day life with a disabled person onto the child, and become more and more violent in the hope of forcing the child to be normal. To me, this is exactly what happens in holding therapy.

I don't want to attack parents who have carried out holding therapy out of love for their child and with the best intentions. The point is that the parent's intentions make no difference to the child's experience. It may seem loving to non-autistic people, but to people with autism it seems like torture. Having trusted parents suddenly do horrible things to you and ignore your pleas for help must just make the whole experience even more traumatic and incomprehensible.

The thought that holding therapy is still being inflicted on people with autism keeps me awake at night. I want to beg everyone connected with autism to stop this now.

Autism-Europe, Code of good practice on prevention of violence against persons with autism, 1998.

Grandin, Temple An inside view of autism. Available on-line from: www.autism.org/temple/inside.html

Howlin, Patricia Children with autism and Asperger syndrome: a guide for practitioners and carers. John Wiley and Sons, 1998.

Joliffe, Therese; Lansdowne, Richard, & Robinson, Clive, Autism: a personal account. In: Communication, Vol 26(3) December 1992.

Siegel, Bryna, The world of the autistic child. Oxford University Press, 1996.

Tinbergen, Niko A. & Tinbergen, Elizabeth A. Autistic children: new hope for a cure. Allen & Unwin, 1983.