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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The terminology of disability

I was faintly taken aback yesterday to find somebody here asking me if I was on the autistic spectrum simply because I had not found something she said offensive. She had written a pastiche of my profile on here which was apparently intended to offend me but which I found mildly amusing and finished off by saying, 'Offensive, isn't it?' I responded in a humorous vein by asking innocently,
'Offensive to whom?'
To which she replied,
'Really? Are you sure you are not on the autistic spectrum? '
I think, although it is difficult to be sure, that she was the same person who said that she thought that I had Asperger's syndrome because I can be a little forthright in expressing my opinions. I have to say, this is a pretty bizarre idea; that somebody who responds good naturedly to something deliberately offensive, should then be diagnosed as having a disability! It really makes me wonder about the mental processes of anyone who could use such peculiar logic.

It is funny how the use of expressions like these changes over the years. We routinely use the word 'idiot' as an insult, but barely a century ago it was a precise clinical diagnosis, being the term used for somebody with an IQ of less than 30. The same applied to the word 'imbecile', (IQ 26 -50) and of course 'moron' (IQ 51-70). These were once very useful words, although few of us would dream of employing them today to describe somebody with learning difficulties! Because people began using them as insults, they became devalued and professionals abandoned them. This is a shame, because of course it is very useful to have exact terms for levels of learning disability like this. Spastic is another clinical description which we rarely use these days. We tend to refer instead to those with cerebral palsy. This is of course because 'spastic' has gone the same way as the words 'idiot' and 'imbecile'; that is to say they have all degenerated into mere abuse. Still, children are usually a step ahead of us when we try to deprive themselves of such handy ways of being rude. Since the Spastics' Society re-branded itself as Scope a few years ago, children in the playground now call each other 'scopers' rather than 'spastics'!

There are two problems with the use of euphemism like this. The first is that the euphemisms quickly become offensive themselves. 'Retarded' went out a few years ago to be replaced with 'mentally handicapped'. We now talk of special needs and learning difficulties. If I referred here to some kid being retarded, I suspect that it might cause offence and yet only a few years ago it would have been perfectly correct and unobjectionable. My daughter tells me that 'retard' is a popular term of abuse at her college. There is a very high turnover in euphemisms in the field of special educational needs and if you use an outdated one then you immediately reveal yourself as at best out of touch and at worst insensitive. How shall we describe that blind kid? Differently abled? Visually impaired? Having seeing difficulties? Fortunately, because I work in Hackney and Haringey I am always on the ball in this respect! The other problem is that useful words and phrases are avoided and everybody gets muddled up. 'Learning difficulties' is used with slightly different meanings by teachers, nurses and social workers and can mean anything from mild dyslexia to catastrophic brain damage. Somebody who is hearing impaired might be a little hard of hearing in one ear or he could be completely deaf.

This is why I object to the use of 'autistic' or 'Asperger's' to describe somebody who appears to be rude or insensitive. There are plenty of rude and insensitive people in the world and very few of them have Asperger's Syndrome. And of course not all those who have Asperger's Syndrome are rude and insensitive. Using the expression in a pejorative way simply has the effect of reinforcing sterotypes. If we sling words like autistic and Asperger's about too freely then they will soon become debased and meaningless. There are any number of ways to describe me without resorting to the terminology of disability. Self-opinionated, arrogant, snobbish, blunt; all these are probably quite adequate! Asperger's Syndrome is a very clear diagnosis and if we are not careful it will go the same way as 'idiot' or 'moron' and we will get up one morning and find that it is no longer in polite usage. In fact, I have heard kids using 'autistic' in the same way that they once used 'spastic', so I suspect that this process might already have begun. Saloon bar pundits regularly suggested that Gordon Brown displayed the symptoms of Asperger's Syndrome and I have heard this said of other politicians who lack charm or charisma. It is becoming quite fashionable to dismiss somebody whom you find aloof as probably having Asperger's. To this extent, I am fighting a losing battle here and ten years down the line both 'Asperger's' and 'autistic' will have slipped into the same category as 'spastic' and 'imbecile'. It is just slightly depressing to see the parents of children on the autistic spectrum hastening this process along!

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