SOME THOUGHTS ON AUTISM

by Ray Ferris

In today’s post, my friend Ray Ferris offers a cautionary and common sense glance at Autism. You may concur with his observations or you may challenge an aspect of the piece. Leave a comment.

“Derek Hoare rightly reminded us the other day that there is no precise definition of autism. It is a description of a spectrum of symptoms, which may have a number of possible causes. Most of the suggested causes are speculative. In the field of autism, as with many other areas of psychology, there are numerous experts with special theories. There are numerous experts who have their own special theories about how to treat autism. So we find that we are in a subjective and speculative minefield, which can completely confuse the parents of a child who has been labelled autistic. Thus it is important to know what we can really rely on and what we cannot.

One of the major problems is that there is no reliable field of research , which makes it difficult to decide what is going to help and what will not. We have many experts who assert how to train autistic children. They all have one weakness. They all describe process, but there is no data on outcomes. When we look at actual outcomes, the picture changes. Consider the following.

Very few autistic children are able to function independently as adults.

Most autistic children are functionally at the level that we used to call mentally retarded.

Many "mentally challenged" or retarded children are labelled autistic, because the label carries less stigma.

The concept that autistic children are very bright, but impeded by a communication problem is without any evidence other than anecdotal. Anecdotal evidence is considered unreliable in scientific research. The evidence suggests that a miniscule fraction of autistic people have some unusual gift. The idiot savant is a rarity.

If we compare autism with a known syndrome like Downs syndrome, we can see big differences. We know what causes Downs and we have long known the range of things to expect. We know what training and occupation to use. Parental expectations are realistic. With autism too much is speculative and parents do not know what to expect. Parents will naturally want to believe the best and can be led to believe in all sorts of false hope.

With many sorts of social dysfunction, one thing is important to know. Some behaviours can be changed with training. For others behaviour can only be managed. If you do not know how to tell the difference, you will spend a lot of money and effort trying to train people whose behaviour can only be managed. For instance, the chronically mentally ill, habitual criminals, severely retarded and so on. If we start to do away with false hopes and concentrate on behaviour management, we will develop a very different model.

There is always the danger that any new theory will create an industry. Autism has its own industry. You think that I exaggerate? Just look at the programme at the University of Syracuse NY. The multi-million dollar funded programme called "facilitated communication for autistic children" thrived for years. There were dozens of "facilitators" hired, who held the hands of autistic children while they tapped out messages on a keyboard. The parents and the facilitators all believed that bright children had penetrated the veil of autism through this method and were really revealing their thoughts. All went well until something very predictable at the time happened. One after another the children started to reveal that they had been victims of sexual abuse. Now with court cases coming up, the evidence demanded critical examination.

An accredited research team came in and quickly revealed the whole scheme as an elaborate exercise in self delusion. A major public affairs programme covered it and the funding disappeared. I mention this to show that in the field of autism anything goes. Even the bright lights in academia can be duped with ease, when wishful thinking prevails.

What lesson can Derek and other parents learn from this? Autistic children are children and they need love and security just like any other child and that is really all one can truly rely on. The ministry of children and families is just as ignorant as anyone else about how to handle autism. The best they can do is to offer help and relief to parents. If a kid cannot function in a school classroom environment, then do not send them to school. Try to make behaviour management programmes realistic and affordable. The ministry should not interfere unless they can guarantee to make the situation better.”

Ray is an unapologetic critic of MCFD mistakes. Ray is the author of 'The Art of Child Protection'. You can purchase it from him by writing to rtferris@telus.net.