Sunday, 31 July 2011

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.

37 comments:

  1. 'However, I shall keep off this topic in future.

    Simon.'

    Obviously, we knew you wouldn't.

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  2. '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.'

    Yes, but 'we' (you and your blog commenters) aren't likely to come up with such discoveries here, are we? Read Simon Barron Cohen's research from the Cambridge Autism Centre if you are really interested in the research in this area.

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  3. Simon said "This topic is important for home educators, because autism seems to be commoner among home educated children than in the wider school population"

    - but I thought we had discussed this before; it doesn't seem at all surprising to me... whether school education in general is good or bad , the one thing that is obvious is that state education struggles to cope with children on the autistic spectrum. If they have associated learning difficulties their needs may be well met in "special education" but most ASD children are expected to survive in mainstream education. There they not only have problems with actual learning but are often the target of bullies and end up both emotionally miserable but floundering educationally.

    In fact I am not sure I have actually come across any autistic children who are from families who chose HE - every single family (ours included) who have an ASD child have withdrawn them from school.

    Whether we as parents are in any way different from the population as a whole is therefore irrelevant. We HE because it works, whereas school didn't.

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  4. I would second everything that Julie said so well and simply add that the one parent I do know who 'chose' HE from the start 'chose' it because after looking at schools they were well aware that it would be a disaster to send their child there. Your discussion is not research and making these sorts of biased posts is not helping autistic children, no matter what you may be trying to pretend.

    In fact, I am at a loss to understand what you are trying to achieve. If it was my autistic son, I would assume that he was using obnoxious behaviour as a terror tactic to try to stop me from doing something... but I am sure, firstly, that you are not autistic, because you have so often said so, and secondly that you would not make these sort of attacks in an attempt to drive people away from your site because they dared to challenge your theories with facts.

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  5. 'Your discussion is not research and making these sorts of biased posts is not helping autistic children, no matter what you may be trying to pretend.'

    No, my discussion is not research; it is about research.

    'you would not make these sort of attacks in an attempt to drive people away from your site because they dared to challenge your theories with facts.'

    No idea what this means. These are not attacks, nor have I put forward any theories. I am simply mulling over the fact that many home educated children seem to be on the autistic spectrum and wondering why this should be. The obvious answer is that the school system is not geared to their needs and that their parents reluctantly withdraw them from school as a consequence of this. Sometimes, the obvious answer is not the correct one. I am by no means convinced that children on the autistic spectrum are uniquely badly served by state education, which leads us to ask why it is those on the spectrum who seem particularly likely to be home educated, rather than those with other syndromes. Since it is parents who deregister their children, it is possible that the parents of children on the autistic spectrum are more liable to take this step than other parents of children with special educational needs. I was wondering why this might be so; if indeed it is so. How this would constitute an 'attack' or reveal me to be displaying 'ignorant idiocy' is something of a mystery. As I say, the message seems to be, 'Don't ask questions or draw attention to this matter'.

    Simon.

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  6. No, Simon, the message seems to be 'parents of autistic children do not deserve to be treated as human beings with feelings. They deserve sly insinuations and constant criticism. If they dare to say that they find this offensive then obviously there must be something wrong with them.' You said a few days ago that you would refrain from commenting on this matter, then promptly came back to it, this time with the added and very distasteful quirk that not discussing it would only harm the children.

    You say you are not convinced that children on the autistic spectrum are uniquely badly served by state education. Have you read the NAS submissions on this to various select committees? Or the Treehouse reports on educational provision? Have you read the study that shows that children with EBD are likely to be more segregated as a result of alleged 'inclusion?'

    Did you read the recent NAS report highlighting how long it takes to arrange suitable educational provision in schools? Or how many parents fail to get it at all? Or how many of the cases taken to SEND tribunals involve autistic children? Or that the majority are found in favour of the parents, and hence the children? Or that many parents go to tribunal several times to try to get this provision?

    Working with people with autism is not the same as living with them. You have said in your previous post that you struggled to provide respite care for a single weekend. Many of us don't struggle. Instead we fight for our gorgeous, unique and sometimes infuriating children. We see what they could be, not what it is most convenient and cheapest for them to be.


    To get them what they need to achieve as much as they possibly can, we get used to fighting self-appointed experts and challenging bias and prejudice.

    We also get used to working out which battles cannot be won, which is why I home educate my children and why I will be deleting this blog from my bookmark list and finding something more useful and productive to do with my time.

    I wish I could say that I wish you well for the future, but the truth is that I hope that someday you come up against someone exactly like you at a time when you are feeling vulnerable.

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  7. 'the message seems to be 'parents of autistic children do not deserve to be treated as human beings with feelings.'

    Utterly bizarre.

    'If they dare to say that they find this offensive then obviously there must be something wrong with them.'

    I neither said nor implied anything of the kind.

    'Did you read '

    Yes, I am up-to-date with all this and know verey well of the difficulties which EBD kids have in mainstream education. This is a broad topic; I was talking about one aspect of the situation.

    Simon.

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  8. "I wish I could say that I wish you well for the future, but the truth is that I hope that someday you come up against someone exactly like you at a time when you are feeling vulnerable."

    Well he may have had a tiny taste of this in another area. He has been derogatory about CFS/ME/Fibro in the past, suggesting that they are psychological and people should be able to pull themselves together. I wonder if he still feels the same now his wife has fibro?

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  9. ' He has been derogatory about CFS/ME/Fibro in the past'

    I wouldn't have said so. I have certainly observed that home educated children with special educational needs seldom seem to be blind, deaf, confined to wheelchairs or suffering from severe learning difficulties. Rather, they tend to present with more obscure and difficult to diagnose objectively disorders such as CFS and ME. This is simply something which happens to be the case; drawing attention to it is hardly derogatory.

    ' I wonder if he still feels the same now his wife has fibro?'

    I do love schadenfreude!

    Simon.

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  10. I'm not at all happy that your wife has fibro and felt quite sorry for your daughter and wife when I read about it. I'm not sure why you would think I'm happy. Projection maybe?

    For what it's worth, there were several children in wheelchairs at HESFES, but then, since you spent so little time with groups of real life home educators, how would you know how many visibly disabled children are home educated? You should know better than to rely on email lists for information like this.

    I'll leave it for others to decide if your posts and the subsequent comments were derogatory or not.

    http://homeeducationheretic.blogspot.com/2010/08/home-education-as-pavlovian-reaction.html

    http://homeeducationheretic.blogspot.com/2009/11/munchausens-by-proxy-and-certain-home.html

    http://homeeducationheretic.blogspot.com/2010/10/special-needs.html

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  11. I'm quite happy to discuss the research. However, I can't see the point of doing so if you are couching your contribution in terms of behaviour being 'weird' or 'bizarre' without any attempt to define what you mean by those categories.

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  12. 'I'll leave it for others to decide if your posts and the subsequent comments were derogatory or not.'

    Always important carefully to distinguish between a word like 'derogatory and one like 'sceptical'.

    Simon.

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  13. 'I can't see the point of doing so if you are couching your contribution in terms of behaviour being 'weird' or 'bizarre' without any attempt to define what you mean by those categories. '

    Well of course I quoted Laura Schreibman above:

    'bizarre behaviour of their autistic children '

    I am afraid that words like 'bizarre' are used in the literature, whether you like it or not.

    Simon.

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  14. "Always important carefully to distinguish between a word like 'derogatory and one like 'sceptical'."

    So are you sceptical about your wife's fibro? Or just about it and similar conditions in home educators and their children?

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  15. '"Always important carefully to distinguish between a word like 'derogatory and one like 'sceptical'."

    So are you sceptical about your wife's fibro? Or just about it and similar conditions in home educators and their children?'

    I honestly wonder sometimes if I am speaking the same language as some of the people who comment here! I shall have to spell this out very simply. One can be sceptical about a claim that somebody is suffering from a certain disorder, without denying that this disorder exists. For example, a man might be on incapacity benefit because he claims to be crippled by back pain. If one is sceptical of this claim, perhaps he is seen playing golf or jogging, it does not amount to scepticism that such a thing as back pain actually exists. I might be sceptical that a child suffers from a neurological deficit called 'dyslexia'; this does not mean that I am asserting that dyslexia does not exist.

    Is this really so hard to understand? Either I am a good deal less articulate than I had supposed or some of the people here are being wilfully obtuse. It is perfectly possible to believe in the existence of some illness or syndrome, while at the same time doubting that all those who believe that they suffer from this disorder actually have it. This happens a lot. Many people claim to be victims of lactose or gluten intolerance, for instance. Few of those tested actually turn out to have these problems. Again, this does not mean that I am sceptical about the existence of gluten intolerance; merely that it is unwise to place too much credence on self-diagnosis. The Ofsted report on home edcuation last year, by the way, found many diagnoses of special needs in home educated children which had only been diagnosed by their parents. This might be a fruitful area for debate.

    Simon.

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  16. "I am afraid that words like 'bizarre' are used in the literature, whether you like it or not."

    But we know generally what is meant by bizarre behaviour in autistic children because the syndrome (and the behaviour) has been described extensively in the literature. You are talking about the behaviour of the parents. Are you saying that their behaviour is the same bizarre behaviour as their children, or is it a different type of bizarre? If it's different, you obviously have to describe it for your comments to make any sense. If it's the same, wouldn't they have the same diagnosis?

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  17. Simon said "I am afraid that words like 'bizarre' are used in the literature, whether you like it or not. "

    Yes and look where it's got us.

    I remember submitting a chemistry paper when I was 14 in which I stated 'the powder in the crucible appeared to have increased in weight'. The teacher's comment in the margin, rightly, was "Did it weigh more or didn't it?"

    Laura Schreibman, yourself or anyone else using a term like 'bizarre' in a psychology practical write-up when I was a gel would have got short shrift.

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  18. 'You are talking about the behaviour of the parents. Are you saying that their behaviour is the same bizarre behaviour as their children, or is it a different type of bizarre? '

    This really is becoming like Alice in Wonderland. I have not described the parents of autistic children as being bizarre or behaving bizarrely. Where on earth has this idea come from?

    Simon.

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  19. 'Laura Schreibman, yourself or anyone else using a term like 'bizarre' in a psychology practical write-up when I was a gel would have got short shrift.'

    This is raving mad. I quoted a standard work on autism which used the word 'bizarre' to descibe the behaviour of children on the autistic spectrum. Now I am being accused of using the word about the parents of such children.

    Simon.

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  20. "It is perfectly possible to believe in the existence of some illness or syndrome, while at the same time doubting that all those who believe that they suffer from this disorder actually have it."

    That's obvious, but shouldn't you have evidence (such as the golf playing person with a bad back) before assuming they are not suffering from a disorder? Many doctors do not believe that fibro is a real condition. They believe that it is psychosomatic. Your previous comments suggested that you held similar beliefs (suggesting that some home educators only suffered from it because another family member did - they were copying modelled behaviour).

    Even the golf player with a bad back may be genuine. It seems likely that pressure on a nerve would cause debilitating back pain and it seems equally possible that movements within the body might change the amount or presence of pressure on the nerve resulting in a temporary reduction of pain/debility.

    Some conditions are likely to be genuine even if medicine hasn't devised or discovered a test to prove it or even show that it exists. It is impossible to test for fibro; maybe it's also impossible to test for gluten intolerance that is affecting the body in a different (or reduced) way compared to coeliac disease? For all we know, fibro could be all in the mind, but does this mean we should treat sufferers with any less care and consideration or accuse them of faking it if it is?

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  21. "This is raving mad. I quoted a standard work on autism which used the word 'bizarre' to descibe the behaviour of children on the autistic spectrum. Now I am being accused of using the word about the parents of such children."

    I accused you of using terms such as 'bizarre' and 'weird'. Using words like 'bizarre' and 'weird' and even 'raving mad' isn't helpful, whether you are talking about the children or their parents since such terminology can mean different things to different people.

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  22. "I am a good deal less articulate than I had supposed"

    Sounds about right.

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  23. 'For all we know, fibro could be all in the mind, but does this mean we should treat sufferers with any less care and consideration or accuse them of faking it if it is?'

    Nobody has accused anybody of faking anything. It is perfectly possible for somebody to believe that she suffers from lactose intolerance and then for it to be discovered that this is not the case. This is not, as you rather unfortunately describe it, 'faking'. It is similarly possible for parents to have the honest belief that their children are dyslexic or on the autistic spectrum without this being so. There is a lot of this sort of thing going on in the world of British home edcuation. The Ofsted report on Local Authorities and Home Education, published in June 2010, noted on page 19 that many children had been diagnosed by their parents alone as being on the autistic spectrum. I am always a little sceptical of people diagnosing obscure conditions in either themselves or other members of their family. When there are no objective tests for the conditions in question, the situation is even more uncertain.

    Simon.

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  24. 'Anonymous said...
    "I am a good deal less articulate than I had supposed"

    Sounds about right.'

    The two possibilities which I suggested, that I am less articulate than I hoped or that people commenting here are wilfully obtuse, are not of course mutually exclusive!

    Simon.

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  25. 'Using words like 'bizarre' and 'weird' and even 'raving mad' isn't helpful'

    It is not, but when I quote an expert on autism who refers to the behaviour of some autistic children as 'bizarre' and then find myself accused of calling the behavior of such children's parents as 'bizarre'; then 'raving mad' is the most charitable way of decribing the situation.


    Simon.

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  26. "I am always a little sceptical of people diagnosing obscure conditions in either themselves or other members of their family. When there are no objective tests for the conditions in question, the situation is even more uncertain."

    Yet you feel capable of disputing their experiences without ever meeting them or their children in person? Autistic spectrum conditions are a diagnosis based on behaviour, aren't they? If their children are behaving in the way described in the literature, does it really matter if they have the condition diagnosed officially or not? The name is being used as a shorthand to describe the child's behaviour. They cannot claim benefits based on their own diagnosis so I'm not sure why it bothers you so much. Is there any benefit to an official diagnosis? Maybe someone who knows more about this can say?

    If your wife had gone to a different doctor (assuming she has an official diagnosis), she may have received a completely different diagnosis. Some doctors would have decided she was suffering from some kind of mental health issue. Would this have changed her physical experience of her condition in any way?

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  27. Simon said "then find myself accused of calling the behavior of such children's parents as 'bizarre'"

    I said *such* terms as 'bizarre'. You have called the parents' behaviour odd, strange and weird, without saying what you mean by any of these adjectives.

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  28. 'Yet you feel capable of disputing their experiences without ever meeting them or their children in person?'

    I doing nothing of the sort; I am counselling caution about taking too much at face value.

    ' If their children are behaving in the way described in the literature, does it really matter if they have the condition diagnosed officially or not?'

    It matters hugely to the children concerned. If a child's behaviour is caused by a problem in the brain, then there is sometimes little that can be done to alter the behaviour. In other words, no matter how much you work with that child, the problems will remain. You can ease them a little, but the autism will remain. Despite all the excitement over the years about things like Holding Therapy, this is essentially the way that a person will always be.

    If on the other hand a child's conduct stems from his upbringing and parenting, then there is hope that his behaviour can be changed and that he will stop behaving in certain ways or exhibiting certain traits.

    If we muddle these two situations up and persuade ourselves that our child is behaving in a certain way because he is on the autistic spectrum when the problem is really quite different, then we might not try to help him change. It would be as though we diagnosed a child with a broken leg as hopelessly crippled and made no attemtpt to help him to walk again after his injury. This is not a very good analogy, but I hope you see the point. This then is the danger of self-diagnosis in this field; that parents will accept as inevitable some behaviours which can actually be altered to their child's benefit. My concern here is for the children and their future welfare.

    Simon.

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  29. "If a child's behaviour is caused by a problem in the brain, then there is sometimes little that can be done to alter the behaviour."

    So can a doctor diagnose autistic spectrum disorders based on looking at the brain? Or do they look at behaviour?

    "This then is the danger of self-diagnosis in this field; that parents will accept as inevitable some behaviours which can actually be altered to their child's benefit."

    There are also dangers in a doctors diagnosis, as the people suffering from fibro who go to the wrong doctors know only too well. Also, do parent's really accept these behaviours as inevitable and not attempt to change them?

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  30. "This then is the danger of self-diagnosis in this field; that parents will accept as inevitable some behaviours which can actually be altered to their child's benefit. My concern here is for the children and their future welfare."

    You seem to be relying heavily on expert opinion here, yet are happy enough to ignore expert opinion that claims schools are the best place for children. How do you decide when to listen to an expert and when to ignore them when making decisions? How do you decide that someone who you've read on the internet is making the wrong decision (or may be making wrong decisions) about their own child?

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  31. 'Also, do parent's really accept these behaviours as inevitable and not attempt to change them?'

    Very definitely the case with ASD. All that is achieved sometimes in nagging a child to stop doing something is to create distress. I have known parents deregister their kids from school because the school continues to push and push at certain things which the child is doing or failing to do and which are very unlikely to change. Suppose for instance that a child goes mad at the sight of small dogs. If this is a 'normal' child, you can sometimes work to change this; by desensitisation, for example. In other words, if you gradually introduce the kid to increasingly smaller and yappier dogs over a period of weeks or months, she may get used to them. Often, these tactics are a waste of time with children who are on the autistic specutrum. Not always of course, but frequently. I have worked with adults on the spectrum who have the same irrational fears and anxieties which they had at the age of three, at least according to their parents. Knowing whether a child is genuinely on the autistic spectrum can thus save a lot of heartbreak for both parent and child. Making this diagnosis is not something which most parents are able to do unaided.

    Simon.

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  32. 'You seem to be relying heavily on expert opinion here, yet are happy enough to ignore expert opinion that claims schools are the best place for children'

    Which expert opinion is this and from which experts?

    Simon.

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  33. The ones trotted out by discussion programmes when a HE issue crops up. Various professors of education.

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  34. 'Also, do parent's really accept these behaviours as inevitable and not attempt to change them?'

    Of course they don't accept that. Over and over again, I've seen kids (with consultant level dx's) with ASD change (moderate or eradicate) certain behaviours with the right encouragement from a parent after they have been removed from school.

    Many such behaviours (tics) and phobias come about as a result of the stress of being in an inappropriate schooling situation. Take school out of the picture and these issues can be addressed.

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  35. 'I have worked with adults on the spectrum who have the same irrational fears and anxieties which they had at the age of three, at least according to their parents.'

    Were any of them home educated for any length of time?

    My dd with HFA was able to lose many of the irrational fears very soon after she left school, at age 5. Some persisted for a couple of years, but her overall anxiety levels and OCD behaviours are dramatically improved now she is an adult.

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  36. Page 19 of the Ofsted report to which Simon refers to back up his dubious claims states "Over a quarter of the 130 children whose parents spoke to inspectors had a statement of special educational needs or were previously at the stage known as ‘school action plus’. There were also those whose parents, often supported by medical diagnosis, identified the children (many of whom were very able) as having some form of autistic spectrum disorder."

    That is not the same as his comment - 'The Ofsted report on Local Authorities and Home Education, published in June 2010, noted on page 19 that many children had been diagnosed by their parents alone as being on the autistic spectrum.' and 'The Ofsted report on home edcuation last year, by the way, found many diagnoses of special needs in home educated children which had only been diagnosed by their parents.'

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  37. "Of course they don't accept that. Over and over again, I've seen kids (with consultant level dx's) with ASD change (moderate or eradicate) certain behaviours with the right encouragement from a parent after they have been removed from school."

    Thank you, that was my impression from talking to parents over the years.

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