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.

Most home educating parents are normal...

I was asked recently to post about the fact that the vast majority of home educating parents in this country are perfectly normal men and women who want only to provide the best possible education for their children. I am happy to do so, because of course this is perfectly true. Unfortunately, the small percentage of strange and sometimes downright loopy individuals scattered among the normal and well-balanced home educators have an influence out of all proportion to their numbers. Many of these weirder types spend hours on the internet connecting with other odd people and, encouraged by a handful of high profile figures, they buy into a fantasy world of conspiracy and persecution. It goes without saying that this is not only the case with home education! That’s just what the internet is like. I am not bothered in general if a group of rock fans wish to get together and exchange mad theories about dead singers or if steam train enthusiasts want to accuse each other of heresy; these are harmless enough matters. I am concerned though when it is happening with home education, because I care about home education and worked for many years with vulnerable children. This is something about which I feel strongly.


Those relatively small number of home educating parents who sit up until four or five in the morning communicating with other like-minded nuts, often become vociferous members or founders of home educating support groups. They pick up a lot of nonsense from the internet and then become evangelical about spreading the news and explaining to other parents why they should not accept visits from their local authority or teach their children to read. Yes, really. I had an email from a mother at a home educating group who was secretly teaching her child to read, because she was too embarrassed to let anybody at her local group know about it. They was a strong ethos there about the virtues of the spontaneous acquisition of literacy and anybody who actually taught their child was regarded as a pushy parent. Imagine that; a home educating support group where parents were made to feel uneasy and ashamed about educating their children!

At another group, two of the main members were bitterly opposed to the MMR vaccine. Again, this was largely as a result of hanging round crank sites on the net. One of them had a child on the autistic spectrum and was so anti-MMR that one of the other parents felt that she had to keep secret the fact that she had had her own child vaccinated. In other groups dominated by people whom one could describe as disciples of various home educating gurus, parents allowed visits from their local authority, but kept that secret as well, for fear of being ostracised.

So, yes it is absolutely true that the overwhelming majority of home educating parents in this country are normal people who are interested only in educating their children. But that small number who are a bit mad have quite an influence and because they are so vociferous, they manage to dominate many groups, forums and lists. It is this which worries me.

'Cruelty to children

One of the less attractive features of the campaign against Graham Badman’s proposals becoming law, was the psychological cruelty inflicted by a number of parents upon  their children, some of whom had special educational needs. During my own daughter’s childhood, I always conceived it to be a major part of my duty,  to protect her from distress and shield her from worry. To reassure her, in fact, that she was safe and that there was nothing to worry about.  This was not at all the line taken by some home educating parents in the run-up to the passage of the Children, Schools and Families Bill through parliament! For them, this was a golden opportunity to make their children anxious and in some cases hysterical with fear; simply so that they could claim that their children were being harmed by the very discussion of increased regulation of home education.

This is not a history lesson and if this sort of cruelty had ended with the abandonment of the CSF Bill in 2010, there would be little point in raking over the ashes. Unfortunately, it has not and there are still parents who are determined to exploit vulnerable children in order to make political capital of them. Consider this, which was less than three months ago:



http://www.home-education.biz/blog/education/dealing-with-highly-intrusive-parasitic-public-servants




Look at the advice given in the above post:



Always tell your children how much you love them and how, if ever they were taken from you, you would never, ever stop looking for them. Encourage them to respect their instincts and always to question the morality of authority. Make sure they learn their personal details as soon as they are old enough and tell them that wherever they are and whatever the circumstances they can always contact you.


I can imagine nothing more likely to terrify a young child out of her wits than to suggest the possibility that she might be snatched from the security of her family. It is the sort of thing which would cause most children to lay awake at night in terror, waiting to be taken. Why would you do that to your child? The answer is that you can then use your child’s response to brandish at local authorities or other people who wish to discuss a change in the law. ‘Look,’ you can tell them, ‘You have upset my child and she is now nervous and clingy, because she is frightened that social workers are about to snatch her away from her family.’

This was done by quite a few parents during the aftermath of the Badman Review. They used to boast about it on various lists. One mother announced that her son, who had developmental problems and was on the autistic spectrum, had had a ‘major meltdown’ when she told him that the authorities would be able to take  him away from her for interrogation alone! I had hoped that mistreatment of this sort had ended, but judging from some of the things I have been hearing lately, it has not. There are still parents frightening their children in this way and warning them that the government wants to enter their homes and perhaps take them from their families.

I am expecting to see more of this sort of thing when the enquiry starts in Wales about the possibility of registration of home educated children. Incidentally, despite Alison Sauer’s irritation at my mentioning the proposals contained in the bill which the Welsh Assembly hopes  to pass in the next year or so, I observe that others have picked up on the thing since I posted about it here. As I suspected, few people knew of it, but this has now been remedied. I am all in favour of change in the law, but I certainly believe that it should be discussed openly beforehand.

More about parents of children on the autistic spectrum

A few days ago I posted a piece which seemed to me to be pretty sympathetic and uncontroversial. In it, I mentioned that the parents of children on the autistic spectrum had for many decades, at least since 1943, been noticed frequently to be a little strange and somewhat different from other parents. I speculated that this might be due not so much to their also having autistic features or mental illnesses, both popular current ideas, but rather to their experiences as parents of a child who is outwardly ‘normal’ but who behaves bizarrely. As a result, I was called ‘callous’ and accused of ‘ignorant idiocy’.

While I have been away, I have been exchanging emails with professionals in this particular field and last night did a quick trawl of the literature. As I suspected, this was not a new idea and was in fact the most reasonable explanation of what many who work with such families have long observed. One person commenting on the original piece clamed that over 70% of children on the autistic spectrum have a parent who is also on the spectrum. I could not find any reference to this and would be glad to hear more about this idea. I have in front of me volume 15 of Developmental Clinical Psychology and Psychiatry, published by Sage in the USA and written by Laura Schreibman. It is a standard work on the subject of autism. On page 51, we find the following, apropos of the etiology of the disorder:

It has been widely demonstrated that a child’s behaviour has effects on the behaviour of the caretakers (e.g. Bell 1968, 1971; Yarrow Waxler & Scott, 1971). It is certainly reasonable to assume that any lack of social responsiveness evidenced by the parents might be a reaction to the lack of social behaviour, excessive tantrums and bizarre behaviour of their autistic children (e.g. Rimland, 1964; Rutter, 1968; Schopler & Reichler, 1971).

I found other references to this phenomenon but, as I have remarked before, this is a personal blog and not an academic journal and I do not think it necessary to reference these posts too extensively! It is enough to say that this was not some weird idea of mine but is part of mainstream thinking on this subject.

I think that rather than taking issue with what I specifically said about this matter, those objecting wished to close down any discussion about the origin and etiology of the syndrome. This does not strike me as being at all a good idea. I mentioned the old idea that parents were solely responsible for their children’s autism. It is careful research which exploded this notion. I really don’t see that it would be a good idea now to stop any further debate or research on the subject. I have seen this sort of thing happen before with autism. Some years ago, it was noticed that a greatly disproportionate number of African and Caribbean children were presenting with autistic features. In one London borough where I worked, this group represented around 40% of the population and yet about 80% of the children on the autistic spectrum were black. This was such a hot potato politically, that nobody would discuss it and this delayed research, with bad consequences for the families concerned. Suppressing facts and trying to prevent discussion of these things is seldom a good idea and almost inevitably harms the kids themselves in the long run. The more that we discover about this disorder and its causes, the better.

This topic is important for home educators, because autism seems to be commoner among home educated children than in the wider school population. When we find that one particular group has higher incidences of autism, whether it is Nigerians or home educating families; it is of interest. I cannot see that exploration of this could be a bad thing.

Social ineptness and awkwardness considered as a possible cause, rather than consequence of home education.

Those who followed the comments on the recent article in The Independent about some Hollywood starlet’s decision not to send her children to school, will have noticed an old and familiar accusation being made; that home educated children grow up to be weird loners, unable to interact normally with others.

Now before we go any further, I have to say that I have no evidence at all that this is so; I simply have not met enough adults who were educated at home to form an opinion. I have met one strange person who did not go to school, but the overwhelming majority of people who present as odd or unable to get along in society did go to school. So I am not putting it forward as an hypothesis that a greater proportion of adults who were home educated are actually socially inept. This is however what is commonly asserted by those who disapprove of home education.

Having got that out of the way, a home educating mother with children on the autistic spectrum contacted me recently, wondering if I could float this idea on the Blog; the possibility that if we meet such adults who were home educated, it might be that they were home educated because they already had difficulties in being with groups of people and that this behaviour could simply linger on into adulthood. She had noticed that the Ofsted survey of home education which was released last year showed a large proportion of home educated children with special educational needs. Other surveys have revealed the same thing and judging by anecdotal evidence, many such children are on the autistic spectrum.

Might it be possible that if a large number of children with autistic features or traits are removed from school because they have difficulties coping with large group situations, then these children might retain this aspect of their characters as teenagers and adults? If so, then any social awkwardness or dislike of group settings, would not have been caused by their being home educated at all. It is rather that this bit of their characters caused their parents to home educate them in the first place. In short, we would be in danger of muddling up cause and effect.

As I say, neither I nor the mother with whom I exchanged emails are asserting that this is so; merely wondering whether this might provide a possible explanation for those strange adults that people who are opposed to home education seem to meet so often. Of course another and to my mind more likely explanation is that those people who claim to encounter so many strange home educated adults are not telling the truth about this anyway and could just be inventing the idea to prove a debating point. The fellow commenting on the Independent article, for instance, claimed to have met four socially awkward adults who had been home educated. I find it unlikely that anybody unconnected with home education would have met four people in the course of everyday life who had been educated at home; it is after only less than 1% of the population. That they would all have been noticeably strange seems to me improbable.