Friday, 19 October 2012

A case of Heller’s Syndrome

As I have mentioned here before, I have had a good deal of experience one way and another with autism and similar disorders. This ranges from the short-term fostering of children to working with adults in a residential setting. I was preparing to write about the acquisition of literacy this morning, when I got sidetracked; this means that I shall instead be writing a little about autism.

I touched yesterday upon the aversion felt by some parents to the MMR vaccine and its supposed role in precipitating autistic spectrum disorders. Much of this anxiety was caused by a rather slippery customer called Andrew Wakefield, whose research has been revealed to have been utterly dreadful and possibly dishonest. He tapped in though to two very powerful undercurrents in the psyche of parents. One of these was a general fear of vaccination and the other the compulsive and thoroughly understandable desire to find a rational explanation for a child’s disability.

Long before Wakefield’s work, there were parents who were uneasy at the thought of their children being injected with germs. This has always been the case and is from time to time made worse by disasters such as that at Lubeck in 1930. I certainly remember mothers in the 1970s who refused to have their children inoculated, on the grounds that it was ‘unnatural’. Where Wakefield touched another chord was that he sought to associate a particular vaccination with a specific ill effect; the MMR with the development of autistic features in  small children  who had, until that time, been developing normally.

Back in the 1980s, I was fostering a boy of five who had all the signs of a particularly severe form of autism. He had almost no expressive speech, echolalia was present, persistent head banging, an IQ so low that it was impossible to measure, obsessive adherence to rituals and routines, along with various other things. You might, had you not know the child’s history, have supposed this to be almost a textbook case of Kanner’s Syndrome or autism. It was in fact nothing of the sort. This child had developed normally up to the age of three and a half. According to his parents, he had been bright, alert and very vocal. Then, he began to lose all the skills which he had acquired. They went over the course of nine months or so. Today, he is in long term care and never recovered any of those skills.

This was in fact a case of Heller’s Syndrome, otherwise known as a disintegrative psychosis. Nobody knows what causes it and there is no cure. Heller described all this decades before the work of Kanner and Asperger. In many ways, the disintegrative psychosis is all but indistinguishable from late-onset autism. No know cause, no cure.

Now if there is one thing more distressing than the death or disability of a member of our family, especially if that person is a child, it is something which has apparently a wholly random origin. At least if a child is born with Down’s, you can understand the chromosomal abnormality which has caused the condition, perhaps agree that the mother was elderly and that this might be implicated to some extent. Even if your child is killed on a level crossing, you can see what happened and perhaps campaign for improved safety at level crossings. In the case of late onset autism, disintegrative psychoses and so on; there is no know cause. One moment you have a healthy, happy child who is reaching all his milestones at the right age and developing normally in every way; then suddenly it stops and he goes backwards. This is the cruellest and most incomprehensible thing which could possible befall a parent. When somebody came along with a simple explanation which tapped into a pre-existing fear, little wonder that he found many takers for this theory. The thing is, Heller’s and sometimes Kanner’s Syndromes manifest in early childhood and they often appear coincidentally after some vaccination. It does not take much to see that as causation and blame the vaccine itself for a completely random act of nature which would have struck in any case.

All of which has of course very little to do with home education, other than the fact that there does seem to be more autism among home educating families than the general population. If though, as is possibly so, between a quarter and a third of home educated children have special needs of one sort or another; this should not surprise us too much. Nor should it come as a surprise that many members of home educating support groups should be vehemently opposed to vaccination; especially the MMR.

The lasting legacy of the fear of vaccines and their supposed association with autism has of course been the death of children. As the end of the millennium approached, measles was becoming a rare illness in childhood. Those, like the present author, who recollect vividly the epidemics of the 1950s, were glad of this. At that time, children were routinely dying and suffering brain damage from the disease. Good news indeed that it was almost conquered. In the year that Wakefield started the panic, there were just fifty six cases of measles in this country. Ten years later, the numbers had risen twenty five fold and we were again seeing deaths from measles. An old enemy had returned, thanks to bad science and spectacularly ill-advised parents.


  1. Mine, thank heavens, were 'different' from the start so I never had this to handle, but yes, late onset autism is a terrifying thing to see and having any sort of disability in a child is a life-long grieving process for the parents. You think you've come to terms with it and then something happens and you're hit in the face by the fact that chances are your child will never do what is easy and obvious to everyone else and it hurts a lot.

    Add to that some people's less than kind attitude to 'difficult' children when you're out and about and the constant fight to get the facilities your child needs and it is so easy to get angry with the world and need an outlet for that anger if you're to cope. Then, when the media presents you with something that fits what happened, what else would you do but believe it? And the medical profession's reputation after things like thalidomide and the way some of its members treat parents of disabled children does not inspire trust and confidence in them.

    That said, we went for single jabs, with the full support of our lovely doctor, who was of the view that we knew so little about what was behind autism that it couldn't hurt especially since we have a familial tendency to it. Maybe if this was possible for other families where it seems to crop out the take up would be higher?

    The facts for my children were that they always ran a fever and had a couple of 'bad' days after any sort of vaccination so they are clearly sensitive to something in them. Reducing the impact by spreading them out over a longer period than usual made it easier, so I'd love to see not a 'yes/no' choice but a 'gently does it' option.

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