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.

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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.

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Home education and autism

Even across the immeasurable gulf of cyberspace, I can almost hear the sharp intake of breath as readers ask themselves what sort of offensive claptrap I am going to come out with on this topic. After all, am I not renowned across the country, and for all I know the world, for my crass insensitivity about home educated children with special educational needs?

Something which one of the regulars here said yesterday has put me in mind of autism. She mentioned that some years ago people were offering 'cures' for autism, based upon a variety of crank systems. I had quite a few dealings with such things at one time and I was wondering how this might tie in with the home education of children on the autistic spectrum. According to the Ofsted report on home education published this year, over a quarter of the parents to whom they spoke had a child with either a statement or who were at the 'School Action Plus' stage. In addition to this, there were other parents who said that their children were on the autistic spectrum. The overall impression is that quite a number of home educated children have or are supposed by their parents to have, autistic features. This tends to agree with what one sees on the Internet lists and elsewhere; that a sizable proportion of home educated children have special educational needs and of these, quite a few are autistic in varying degrees of severity.

Now it is an interesting fact that the parents of children with autism are more likely to fall prey to conmen and purveyors of fake remedies and snake oil than are the parents of children with some other special needs. Why should this be so? The problem lies in the possibility or claimed possibility of a 'cure'. If your child has Down's Syndrome, then you know where you are. Extra chromosomes, an epicanthic eye fold; the child has Down's and that is that. The same applies to neural tube defects like Spina Bifida or blindness. It has after all been almost two thousand years since anybody was able to make the blind see. You know where you are with these conditions. The case is slightly different for the parent of a child with autism. After all, he looks like every other kid. Maybe there is something that can be done? Perhaps this is like fixing a broken leg, rather than coming to terms with a life long disability? At one time, autism was thought to be caused by purely psychological factors; the so-called 'refrigerator mother', for instance. If it had been caused by a failure to bond, then surely there might be a way to rectify this deficit in later life? Others suggested that the problem lay in the circulation of the Cerebrospinal fluid and various other outlandish explanations, all of which were accessible to treatment.

I have written before of my experience with 'facilitated communication' and autism, but I also witnessed some pretty awful scenes with other treatments for this disorder. I wonder if anybody remembers holding therapy? The idea was that if you could hold an autistic child very tight, squeezing him to you and forcing him to stare you in the eye, then the bonding between mother and child could be repaired. If he refused to look you in the eye then you had to use 'tactile stimulation' to make him. This meant poking and prodding. I was around when Esther Ransome's husband Desmond Wilcox made a documentary about this and for a while it was very popular. Another idea was craniosacral massage. This entailed rubbing the child's head in order to reduce blockages in the circulation of the fluid there. It was also a complete fraud. Then there was the light therapy, the Higashi Method and any number of other 'cures'.

How does this tie in with home education? One of the things that one notices about most of the home educated children with special educational needs whom one hears of or encounters is that they tend to have Specific Learning Difficulties or SLD. This means that their difficulties lie in one or two specific areas, rather than being global. Often, as in the Ofsted report, autism is sufficiently prevalent to be mentioned. There are two possible explanations for this. The first is that children can be pretty dreadful to each other generally and they are especially dreadful to anybody who is a bit strange or out of the ordinary. Under these circumstances, withdrawing a child from school is simply a protective measure to protect her from further distress . There is a second possibility though, which may well be combined with this desire to rescue a child from an unpleasant situation. It is this.

As I said above, while one hears a good deal from home educating parents whose children are on the autistic spectrum, one seldom hears from those whose children are blind or confined to a wheelchair. I have puzzled over this a good deal. I am wondering whether it might be the case that those whose children have a definite, obvious and lifelong handicap come to accept this more readily than those whose children have autism. It occurs to me that parents who decide to educate their AS children at home might subconsciously be seeking some sort of 'cure', or at the very least be hoping at the back of their minds that undertaking this unusual form of education might effect a great change in their child's condition. This could go some way to explaining why so many home educated children with special needs are on the autistic spectrum and so few are physically disabled or suffering from severe learning difficulties. In the latter case, their parents know that little improvement is likely in their child's condition, but the parent of an AS child might be hoping desperately that if they work hard enough with their child, some day something might 'click' and they will see a dramatic improvement in the condition.

I have no idea whether this hypothesis has any merit, but if it has none, then there must be another reason for the number of autistic children one hears of being educated at home. There must also be another reason why so few children with severe learning difficulties seem to be de-registered from school and home educated. I would be interested to hear of anybody's theories on this.

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Autism and home education

Even across the immeasurable gulf of cyberspace, I fancy I can hear the sharp intake of breath and see the narrowing of eyes and shaking of heads which the very title of this post is liable to be causing. What sort of insensitive claptrap is the man planning to come out with now? Does he have an autistic child? What does he know about it then?

All fair questions indeed. I am not proposing to write about the actual home education of autistic children, about which I know nothing. Instead, I am going to talk a little about autistic children and adults of whom I have a good deal of experience and see how this might relate to styles of home education. I will be propounding no dogmata, really doing nothing more than inviting those who do know about this subject first hand to comment.

I used to work for Alice Hoffmann Homes in the 1980s, which is now the Hoffmann foundation. This was when the long stay institutions were being emptied and I was involved in doing assessments of adults from places like Harperbury Hospital in Hertfordshire. The idea was to get them into small residential units. At about the same time I was doing this, I was undertaking short term fostering for Barnados of children on the autistic spectrum. Actually, I met my present wife while working for Alice Hoffmann. Going off at a slight tangent, something I have noticed is that people who choose to work with autistic adults are often a bit peculiar; I don't think it's the kind of work that a normal person could do for long! In fact a lot of people associated in whatever capacity with autistic people come across as being a little strange. This includes many parents. At one time this was of course thought to be the cause of their children's problem; weird parents produced weird children. Kanner, who first defined the syndrome, had no doubt at all about this and some readers are probably familiar with the notorious idea of the so-called 'Refrigerator Mother'. My own feeling is that this is muddling up cause and effect and that the experience of having a child with autistic features most probably changes parents and makes them a bit prickly and tough. This is necessary to protect their children from all the ill informed nonsense which they encounter in the world. In other words it is the experience of having a child who is different which causes parents to be different, not the other way round.

One thing which I noticed about the adults with whom I dealt, all of whom were non-verbal and had severe learning difficulties, is that a lot of them had some special interest or other. One would be attracted by shiny things; jewellery, coins and human eyes, at which he used to grab. Another was fascinated by wheels and other spinning objects. He would stare endlessly at vehicles in the street and had a toy car whose wheels he would spin round, just in order to watch them. It was a large part of the support workers' job to try and distract them from these obsessions and get them to do other things. With higher functioning children, on the other hand, special interests were usually mental rather than purely physical. I remember two boys in particular. One was twelve and his main interest in life was London bus routes. If he met anybody he would ask how they had arrived. His opening gambit would be along the lines of, 'Did you get the 254 here?' or if he knew that one had come from Ilford, he might ask, 'Do you ever get the 86 from Ilford high Road to Romford?' Another boy who took A levels and went to university was very bright but with two passions. These were mountains and the technical specifications of ocean going boats.

Why am I talking about these two young men? For this reason. Much of the education they received was devoted to training them to fit in with everybody else in ordinary society. Just as with the non-verbal adults there was a lot of work in getting them to stop spending all day staring at spinning wheels and live a more 'normal' life, so too with the children who had an over-riding pasion for some obscure topic. Obviously, when I hear that somebody comes from Hackney, the first question I ask is not about what buses they can catch from Mare Street. This would frankly be a bit weird. So we have to try and get a kid like this to change his conversational style a little. We also have to get him if possible to think a little less about buses and a bit more about all sorts of other things. The same goes for a boy whose real interests are mountains and ocean liners. I have to say that I can perfectly understand the attraction of simply collecting facts about things in this way. People are messy, complicated and unpredictable, but the bus route from Oxford Street to Tottenham Court Road is something you can rely upon! Just like the height of Snowden or the cubic capacity of the Titanic's water tanks. I have been accused of preferring books to people before now and there is some truth in this. You can depend upon books in a way that you can't really do with people. You never know what people are going to do next and so there is something comforting about just associating with books and facts. They are safe and predictable.

Many home educated children have special educational needs of one kind and another. According to the recently published Ofsted survey of Local authorities and home educators, a quarter of the children whose parents they spoke to either had statements or had been at the stage of 'school action plus' before they were de-registered. Many of these kids are on the autistic spectrum. Judging by what is said on the Internet lists, not a few of these children are autonomously educated at home. Now here is where I am curious and would be grateful for any information. As I said above, when one has an autistic child at school, a lot of the efforts are to get him to talk and behave like everybody else. No rocking to and fro if he is stressed or bored, not too much conversation about buses, no wiggling your fingers in front of your face to observe the interesting effects of the flickering shadows. Children at school often have pretty detailed programmes about such things. They also have rounded educations which take their minds off any special obsessions which they might have. I am wondering if home educating parents often follow the same approach.

In other words, I can imagine that in the case of the boy who was fascinated by bus routes that if given the choice and allowed to follow his own interests, he would have studied nothing but timetables. Who knows, he might have branched out into train routes and times, but I doubt he would have studied science or mathematics. These would have been an unnecessary distraction from the proper business of timetables and routes. What would a parent who practiced autonomous education do about this? Would she give the child freedom to decide only to study buses? I am also interested to know about behaviour modification, a lot of which takes place in both schools and residential units. I wonder if home educating parents run programmes like this at home. Do they insist that their children conform to certain norms and so on? For instance are they always saying things like, 'Good sitting Robert! Put your hands down. Look at me!' and stuff like that? I have to say, this would sound really strange in a domestic setting as opposed to a school or day centre.

I am not saying that this would be either good or bad, I am just wondering if it happens? I have no doubt that the work done at schools and so on to change the behaviour of some young people can help them to fit into society better. On the other hand, I have seen such children and adults becoming very stressed because some comforting behaviour has been forbidden them. Sometimes, I have thought this cruel although I understand the rationale behind the prohibition. Is anybody aware of any comparisons which have been done, or even any anecdotal evidence about the difference between school and home education for children on the autistic spectrum?

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The strange case of facilitated communication

During the late eighties I was working in a residential unit for autistic adults with severe learning difficulties. This was quite exciting because these people had absolutely no spoken language and some of them were prone to launching murderous assaults upon anybody who annoyed them in any way. They had all be recently released from long term institutions such as Harperbury Hospital in Hertfordshire, as part of the care in the community programme. While I was working there, we were approached by a group of people who offered to help us communicate more effectively with our residents. At that time most of them knew only a few Makaton signs; Makaton is a simplified version of British Sign Language. The method which was now suggested was facilitated communication.

Facilitated communication was very popular among some of those working with non-verbal autistic people at that time. It worked a bit like a Ouija Board. A large piece of cardboard with the alphabet printed on it was used and the autistic person's arm was held by the communicator and they were 'helped' to point to the letters. The person with severe learning difficulties who had never spoken a word in his life could then communicate by spelling out messages; the whole idea being that these people had actually learned to read and spell by themselves, quite unknown to anybody else. In fact they didn't have learning difficulties at all, they were really just normal people locked into bodies which would not obey them.

It sounded odd to me as I knew all these residents very well and simply could not believe that they could really read and write. The thesis was that their aggressive behaviour was caused by their inability to make themselves understood. Anyway, we went along with it and I watched with interest. it soon became clear to me that the whole thing was nonsense. rather than 'helping' the resident to spell out the words, the facilitator was, whether consciously or not, using the persons hand as a pointer and making up the messages herself. I began asking questions and making notes about what was happening, upon which a curious thing happened. The whole thing stopped working at once. It turned out that close observation had the effect of destroying the trust which existed in the room and damaging what was taking place. I agreed to stop taking notes and limited myself to asking questions of the facilitators when we were alone. It then appeared that even the presence of a sceptic was enough to disrupt what was happening. I was banned from even sitting in on the sessions.

I managed to get this stopped in the end, because the residents own money was being spent on this swindle and it was outrageous. Tests were carried out in the USA on this process and it was found that if the facilitator could not hear the questions being asked, then the autistic person could not answer. It was conclusively demonstrated that, as I suspected, the whole thing was ridiculous.

I mentioned Ouija Boards earlier and this was very similar to my experiences with contacting the dead. Because whenever I have taken part in seances or anything similar, exactly the same thing happens. It will not work while I am present. Very odd.

I have for years been suspicious of any unusual phenomenon which people grow angry about when questioned. I am also very suspicious of any sort of activity which is destroyed or disrupted by being watched or which stops taking place when a cynical observer is present. Transcendental Meditation, the transubstantiation of the Host, summoning up the dead, spoon bending, dowsing and so on are all like this in some way. So of course is autonomous education.

While I was allowed on lists such as HE-UK and EO, I asked many questions about autonomous education. The aim was not to make people angry but to try and make some sense of the thing. I soon discovered that people grew angry and defensive very quickly when questioned about this subject. The idea seemed to be that one should take the existence of this on faith and that it was bad form to be sceptical about it. This is how people react when questioned about their religious beliefs. I also noticed that when discussion turned to research, parents claimed that they would not want an unsympathetic observer to conduct research into autonomous education because their cynicism might harm the educational process. Hence the attempt to organise a boycott of the Ofsted survey last year and the determination of many not to take part in the Department for Education's longitudinal study of home education outcomes. This is similar to the way that dowsers will not allow objective observers to test their abilities. Those using telekinesis to bend spoons or clairvoyance to talk to predict the future also dislike being observed by non-believers. Their powers often fade under lack of sympathy!

There is another similarity between facilitated communication and autonomous education. Parents often follow these unconventional treatments when they feel that they have been failed by orthodox medicine and education. So it is in many cases with autonomous education. Conventional schooling has been a flop for their child and so they turn to alternative methods. An alternative method which cannot be measured, assessed or, most important of all, ever disproved. This has to be an attractive prospect. My child was written off as a failure/bullied/struggled/could not cope, but it was nothing to do with her at all; it was the system which failed. I have seen this many times in the field of autism with not only facilitated communication but also Holding Therapy, mega-vitamins and various other things.

Mind, I do not say that autonomous education actually does fall into the same category as some of the other belief systems which I discuss above; only that its adherents behave in the same way. As far as I am concerned, the jury is still out, but I have to say that my own inclination is moving in a certain direction.

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