Friday, 20 August 2010

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?


  1. I would imagine that the parents of children with ASD's are as diverse a bunch of home educators as any other subset. So, some will educate autonomously, some with a definite programme of some sort and most somewhere in between.

    I've known quite a few (some undiagnosed) young men with ASD who were contemporaries of my daughter (also with ASD) and who were HE'd at the same time and are now moving on to 6th Forms and Colleges to complete their education. Every single one has benefitted enormously from having had the freedom to learn and grow at their own pace. Most people would only notice slight oddities about them now, whereas their condition was pretty obvious when they were little or just after having been withdrawn from school.

    The critical issue is that these kids do all the weird behaviours BECAUSE they are stressed. As you suggest, they are self-soothing behaviours. When my dd was in Reception (before we took her out to HE) she had all kinds of unusual and destructive tics. Every single one disappeared within months. When she seemed to be developing a new one, we'd remind her not to do it and distract her, at the same time as helping her to express herself more appropriately and teaching her how to deal with stress. But the point was that she was not exposed to the same sort of stress-induing situations because she wasn't at school any more. The behaviours weren't necessary.

    Now, I'm on the 'coercive' end of the HE spectrum, in that I'm happy to give my kids a gentle push. I have gently pushed my dd with ASD and she has met those challenges magnificently. I knew when to push and when to back off because I knew her intimately. A teacher was never going to have the same (love) connection with her that I did. I was supremely well-placed to know her needs and potential, to push her to achieve as much as she was capable of doing, with the least damage to her mental health.

    Teen girls with autism generally have a multitude of mental health problems, some extremely serious. My daughter (now 19) does not. My belief is that this is because she did not face the pressures she would have done at school. She is happy, self-confident, achieving and operates remarkably well now in groups and attends FE college. I could not be more proud of her.

    I KNOW this is because of HE. I've seen it over and over again with other HE'd kids with ASD of all types who have completed their HE. I shout it from the rooftops!

    Mrs Anon

  2. PS what's the difference between behaviour modification and operant conditioning?

    Mrs Anon

  3. "I KNOW this is because of HE. I've seen it over and over again with other HE'd kids with ASD of all types who have completed their HE. I shout it from the rooftops!"

    I am sure that this is true. I have no doubt that if my daughter wre on the autisitc spectrum that would have been even more reason for me to educated her myself.

    "The critical issue is that these kids do all the weird behaviours BECAUSE they are stressed."

    I find it fascinating that society has a range of behaviours of this sort which are quite accepted. Stray outside those parameters though and you become weird. For instance about a third of people inhale carcinogenic substances into their lungs causing massive and often irreperable damage. That's OK. Start banging your head against a door when you are stressed and that is definitely out. Similarly, it is fine to comfort eat greasy food or bite your nails, but just try rocking backwards and forward rhythmically and you will get some really funny looks.

  4. "PS what's the difference between behaviour modification and operant conditioning?"

    None really. I have observed that changing the behaviour of those with autistic features is done systematically with both children and adults. I suppose that observing some of the methods used struck me as useful and so I adopted them for my own child. Ethically, there are big problems though with this sort of thing and I have a suspicion thatsome parents might not altogether approve of the extent to which this goes on. You have to ask yourself, if the only pleasure in life of a completely non-verbal autistic adult is eating too much and he is getting fat, then what is the justification for putting him on a diet and then trying to change his attitude to food? As God he knows, enough 'normal' people stuff their faces to excess!

  5. I have said here before (no doubt repetitively) I am the parent of an autistic daughter, now 18. She was diagnosed "late" (at 9) partly because she has other issues which had been apparent from her infancy (and which had meant years of investigations and treatment by other bits of the NHS) and partly because we "knew" - and what difference was in going to make to have it written on paper? In fact the hospital assessment starts with the statement "that her parents seem very accepting of her condition"..... but then again, we have 2 (adopted) disabled children too, so what is a bit of autism compared to their (more visible and unchangeable) issues?

    Taking our daughter out of school at 7 though mae a huge difference to all our lives. The behavioural issues (which were terrible in school and spread over to home) became much more controllable when she was at home all the time, and her educational attainment soared. However we definitely followed a structured routine, and I did have goals for both her learing and her "autism". For example she had a massive language delay (she didn't say a single word until she was 4) and unlike some families experience being out of school got us better access to SLT; we therefore worked daily on the programme we were given... and of course she had my undivided attention during school hours. Whatever the reason she made rapid progress and we were discharged at around aged 10, having caught up. We also worked to eradicate "odd" and obsessive behaviours, which, to be fair, were never that bad, but which had become an issue when she spent hours at school at a desk, ignored because they couldn't engage her. At home, distraction was far easier; and because she is fairly "high functioning" it was possible to teach re things like making eye contact with others; she may not have done it naturally but she has learnt that it is desirable behaviour so she does it. We have always done a lot of positive reinforecement too whenever she copes with a challenge so we are part of the "well done, Robert" category!

    Of course, home ed hasn't wiped away all the issues; she is still occasionally terrified (for example by loud noises, fire alarms or anything where she is stressed) and then behaves completely irrationally. We have had some dreadul incidents in the past year - in a hospital where she needed a scan, she went absolutely berserk and it ended up with me on the ground and a major crisis with 10 or so security guards. She is on daily medication (for health issues) and that is a continual challenge... as is teeth cleaning.

    Don't know whether that answers any of your questions, Simon! Intending to go off out to the Imperial War Museum today (sans children) - they think it is sad we still behave like home educators even when we leave them at home!

  6. There are a couple of pages on Sandra Dodd's site about RUS and autism.

    I don't know how her place on the autonomous spectrum fits with the bulk of AHEing parents with autistic kids, either there or here, but this is what she suggests.

  7. That's very interesting Julie, thanks. The idea that it is the school and other formal settings which provoke the anxiety and cause stressed behaviour sounds absolutley spot on.

    As for your visiting the War Museum, I can top that! While my daughter was in Cambridge, I re-visited the London Transport Museum, in order to look at the trolley bus there which reminds me of my childhood. The look of scorn on Simone's face when I told her this was priceless. Ridding one's self of the home educatin habit can indeed be hard, although my daughter is helping to modify my behaviour with some pretty effective sanctions. She has, for example, made it pretty vlear recently that the old gag of answering a question with a question is now well past its sell-by date. You know the sort of thing, when your kid asks, 'Why do the leaves fall in the autumn?' and you respond with, "Why do you think the leaves fall in the autumn?' I have had good mileage out of this one over the years, not least in order to buy me a bit of time when I don't know the answer to the question.The last time I tried this tactic, the reaction was, shall we say, emphatic. I won't be doing it again. I told my wife the other day that once Simone goes off to university, I was thinking about educating her at home. I didn't even know that she knew words like those with which she greeted this sugestion. Some people can be very ungracious about declining a well meant offer!

  8. It all depends what you mean by autonomous education.

    In a follow-up study involving the children in Kanner’s original paper, Don, whom Kanner describes at some length, had been fostered by a couple who ran a farm. Don was fascinated by the rows of maize on the farm, and the couple used this preoccupation to teach him how to count and to calculate. If I remember correctly, Don ended up working as a bank clerk. Not a scintillating career, perhaps, but infinitely preferable to the fate of some of the other children.

    The couple, very sensibly, used Don’s strong interest in rows of maize as a starting point for learning a useful skill. They did not decide to start by presenting him with a broad, balanced curriculum in order to make him as normal as possible. Was the education they gave him autonomous or not? If so, how autonomous was it? We don’t know and it doesn’t matter that much. The point was that they got him to the point where he could earn a living.

  9. Wanted to add something about stress. Little doubt that many people with autism stim when stressed and that these behaviours can be disconcerting to onlookers. No problem with the behaviours being modified where possible.

    But there seems to be a widespread perception that autistic behaviours stem from high levels of social anxiety and that stimming is something that calms the person down. This might be the case, but I have yet to see any suggestion or evidence for a mechanism. That is, what actually happens in the person’s brain when their anxiety levels rise, and how does stimming lower the anxiety.

    What is far more likely, IMO, and the research supports this, is that stimming regulates sensory input, notoriously abnormal and variable in people with autism. Sensory abnormalities could also underpin the wide range of learning difficulties experienced by people with autism.

    So unless the underlying sensory processing changes - and it often does over time – educating autistic children isn’t simply a case of the autistic child learning how to behave ‘normally’.

  10. "Not a scintillating career"

    I don't know much about autism (I watched Rainman, and a really old film with Elvis Presley as a doctor, that is my entire education, and Hollywood isn’t the most trustworthy of sources), but if he was finding fascination in patterns and numbers maybe to him being a bank clerk, immersed in exactly the concepts that captivated him as a child, wouldn't he find it scintillating even if to some of us it sounds like death by extreme and inhumane boredom ?

  11. You know suzyg, the use of the word 'stimming' is a dead giveawy that you are yourself involved in the world of autism in some capacity or other! I know that you are, or were, a teacher. is that where you picked it up, or was it closer to home?

  12. "educating autistic children isn’t simply a case of the autistic child learning how to behave ‘normally’."

    I do hope everybody realised that I was using this expression ironically. When nervous I chew the inside of my lip. I have drawn blood in this way. This is no different to the client with whom I worked who used to bite his fingers until they bled. The habits which we try to break in those on the autistic spectrum are often no different from our own. If you watch people closely, you can often see rocking, or leg twitching and other rhythmic movements. Mostly, we keep them under control, but they are exactly the same as the less socially acceptable rocking and hand flapping which we sometimes see in those with autism.

  13. @ Sarah

    I wasn't denigrating Don's career at all. Compared to some of the other children who ended up institutionalised he did really well.

    At the back of my mind was an assumption that runs through some strands of educational propaganda that children have to 'excel' - even if they have a disability.

  14. Re 'stimming'. I came across the term in the literature. I think it's really useful. 'Repetitive behaviours' is too broad. 'Repetitive motor movements' isn't broad enough. Lists of specifics are too cumbersome.

    I don't know where the term originated, but the concept was around in the early 60s and had some grounding in work on sensory deprivation.

    I would completely agree that a great many people exhibit similar behaviours and would not be in the least surprised if most of them turn out to be a strategy for achieving sensory homeostasis. As you imply, it's only when they become noticeable or socially unacceptable that people start talking in terms of pathology.

    I identified specific sensory abnormalities in my son some time before he was diagnosed with an ASD. It was only when following those up, that the diagnosis, so-called, emerged.

    Obviously one would try to change behaviours that might do damage. The point I was making is that identifying the immediate, if not the original, causes might help.

  15. "At the back of my mind was an assumption that runs through some strands of educational propaganda that children have to 'excel' - even if they have a disability."

    That sounds rather unfair. Why rise the bar higher for people who are already having to overcome a disadvantage ?

    I didn't think you were putting his acheivements down, I'd go mad if I were a bank clerk from sheer boredom (relived only by the excitement of getting fired cos I buggered it all up), but I can see why the lad you were talking about would find it scintillating if it contains the same elements that he found fascinating in the fields, in a way that your average bank clerk wouldn't.

  16. "a strategy for achieving sensory homeostasis."

    There is of course perseveration, which you see as well in Parkinsons. This manifests sometimes in autism, where the person reaches out or puts a foot forward and then pulls back and this can go on for quite a while. It looks like twitching. This looks a bit like stimming if you aren't used to telling them apart.

  17. 'I find it fascinating that society has a range of behaviours of this sort which are quite accepted. Stray outside those parameters though and you become weird. For instance about a third of people inhale carcinogenic substances into their lungs causing massive and often irreperable damage. That's OK.'

    Oh sure. I'm immensely irritated by the middle-aged men who jangle keys in their pockets and hum indistinguishable tunes when they are nervous. I seem to encounter them often, mainly in the lingerie dept of M&S where they follow their wives like little sheep. I have yet to be able to buy a bra without hearing that key jangle somewhere within a few yards of me.

    Plea to women...leave your poor husbands at home when you are bra-shopping...especially if they are key-janglers.

    Mrs Anon

  18. suzyg said: "At the back of my mind was an assumption that runs through some strands of educational propaganda that children have to 'excel' - even if they have a disability."

    sarah said: "That sounds rather unfair. Why rise the bar higher for people who are already having to overcome a disadvantage ?"

    It is rather unfair. But not if you adopt a social model of disability. A previous government minister could see no reason why children with autism shouldn't get 5 A-C GCSEs. Of course *some* of them might. But others would only if you made significant adjustments - which would then also be necessary in the world of work and would somewhat defeat the point of having a standardised exam.

  19. "A previous government minister could see no reason why children with autism shouldn't get 5 A-C GCSEs."

    But isn't there a huge range of possible level of learning disability included on the autism spectrum ? The single person I have known personally with autism got a perfect score for her law degree at Statale in Milan, so I'm sure some kids with autism would get fistfuls of GCSEs, but don't see how he could make such a generalized statement.

    All big companies here HAVE TO employ a certain percentage of people with disabilities, unfortunately I think they look less at the individual abilities of the people they employ and more of the ease at which they can include them in the company without any great adaptation required, is that what you mean by a social model of disability ?

  20. The wikipedia entry on the social model of disability is a pretty accurate description of the model adopted by the previous UK government, Sarah. They actually reference the definition given by a charity but I can't find it at the moment.

    The social model of disability basically says that many disabilities are disabilities only because the rest of society has not made reasonable adjustments for all its members to participate in its communal life. I wouldn't disagree with that.

    However, the social model of disability is often extended beyond its range of convenience and assumed to explain *all* disabilities. This is particularly the case with behavioural, rather than overtly physical disabilities. In short, because autistic people are assumed to have problems only with social interaction, I suspect that some policy makers have assumed that they can therefore get GCSEs like everyone else, if only their social issues were dealt with properly.

    I don't subscribe to this idea - but the previous UK govt seems to have done. Your point about the individual abilities of the people employed is a very important one, often overlooked by over-enthusiastic proponents of human rights.

  21. Here's an example - this is Scope

  22. "However, the social model of disability is often extended beyond its range of convenience and assumed to explain *all* disabilities. This is particularly the case with behavioral,"

    I read the list on Scope and I understand the thrust completely. The problem is that words alone don't change the underlying mindset anymore than our current mode of insisting that people employ disabled people achieves companies viewing them as individuals who are a valuable resource based on the abilities they DO have.

    I don't remember which blue chip it was, but when I was teaching in Milan one multinational client chose to employ their national quota of disabled people by refitting one call centre and staffing it with exclusively blind people. They were isolated in that single off-site centre, there was no integration with the rest of the company, they got the job based on nothing more than the specific code on their "registered disabled" ID, graduates and high school dropouts in one single box labled “cheaper by the dozen, job lot”. Which I found utterly dehumanizing. Maybe it is a very workable solution, but the attitude behind it felt so, so wrong.

    Taking a sharp left, my MIL is registered disabled because she has bipolar I, and not the sort of manifestation that people expect based on knowing that Stephen Fry has bipolar.

    Society would be hard pushed to remove the social barriers that disable in that case. Unless we choose to make hurling stuff (inc knives) off balconies at passersby on the off chance they are Ukrainian Spies a socially acceptable behavior. The only “removal of social barriers” I have seen is the raising of the bar before a family can protect a member (or passersby), from themselves without running the risk of being charged with kidnap and unlawful imprisonment, because the stark choice is frequently let somebody get hurt or restrain her via a locked door.

    While I think what they described as the social model of disability is workable on many levels and sounds “right”,… without qualification and detail, it seem awfully simplistic.

    Words are powerful and can help elicit change, but not all by themselves as a silver bullet, they need nuance and action to let them be part of the solution to a range of complex issues.

    I think at the very least the mode of real world application of the model has to be "policed" to make sure it doesn't add to dehumanization (shove “the blinds” off into call centre apartheid). Not to mention making some people collateral damage.

    I’ve never heard of the model before so if I have grabbed the wrong end of the stick and run with it, feel free to yank me back and set me straight.

  23. As I see it, there are two basic approaches to public policy. A bit like parenting, really. You can adopt a coercive approach - thing A is bad so we'll make it illegal and thing B is good so we'll make people do it; or you can look at the very complex way in which people interact with the law and say - how can we tweak this complicated network of relationships and behaviours to make people do thing A less and thing B more?

    The second approach is more challenging and expensive, but probably more effective. The first is more obvious and cheaper, but often doesn't work.

    The first approach has been in vogue for some time, in the UK at least, and we're still picking up the pieces.