Saturday 10 October 2009

Home education and special educational needs

I suppose that I should say a few words about special educational needs. The reason for this is that some idiots have seized upon a post I put up here on the subject and are now using it to try and prove that I have an unacceptable attitude to disability. Firstly, let us look at the relevant section upon which these complaints are founded. The context is that I was questioning the often made claim that a disproportionate number of home educated children have special educational needs;

"Almost none of these children have what most people would describe as a special need or disability. There do not appear to be quadraplegics, children with spina bifida or Down's Syndrome, the deaf or the blind, those with moderate to severe learning difficulties. Instead, they apparently suffer from a variety of problems which are usually alluded to by a few cryptic letters; AS, ADHD,ME,ODD,OCD and so on. Since many of these mothers, for those on these message boards are almost invariably female, present as articulate, anxious and middle class, it is interesting to speculate about the reason for the sorts of problem which they claim their children are afflicted with.It is a long standing joke among those with whom I work that middle class children are never illiterate. They "suffer" instead from dyslexia. Nor are they naughty and badly behaved; it is that they are displaying the symptoms of ADHD. Clumsy and ill co-ordinated middle class kid? Must be dyspraxia. And so on and so forth. In other words, there is a good chance that there is actually nothing much wrong with many of these children other than the usual childhood problems; namely that they are reluctant to learn, they drop and break things and don't do as they are told."

Observe that I am talking here about problems which some mothers "claim their children are afflicted". I am referring to some of the people one reads on the lists who say that they think that their child must have Aspergers because he is so shy and socially inept. Others have claimed that they suspect that their husband also suffers from Aspergers or AS for short. From this, one recent poster on the HE-UK list has concluded that I am denying the very existence of Asperger's Syndrome. I am actually talking about parents who have been specifically told that their child does not have this syndrome, or whose children have not even been seen by a doctor or psychologist and then use this relatively rare disorder to explain their child's behaviour. I might mention that in the eighties I not only worked for the Alice Hoffmann Homes in this area, but I also fostered a child with autism for a project run by Barnados and LB Tower Hamlets. To suggest that I do not accept the existence of Asperger's Syndrome is utterly mad. I do find it offensive though to see genuine medical conditions used glibly to explain or excuse some child's behaviour.

As for some of the other Alphabet Soup syndromes I mentioned, well, don't even get me started on ODD or oppositional Defiance Disorder. This means that your kid does not do as he is told when you want him to do something. My own children suffered from a particularly intractable form of this syndrome, although I never sought medical help! Just to recap, I was talking about the parents one hears who claim that their child must have ADHD because he is so inattentive. Or those who believe their child to be dyspraxic because he has trouble doing up his shoe laces. I am very happy to discuss disability and special needs at length with anybody, but to try and make out on the strength of the above paragraphs that I am have a poor attitude to disability is ridiculous. A poor attitude to neurotic parents who seize on fashionable syndromes to excuse ordinary childhood behaviour, certainly, I will plead guilty to that!

36 comments:

  1. Hi Simon,

    I'm really glad that you have clarified your beliefs about this. The first I knew of your ideas was the blog entry you mention and I was really shocked that you seemed to consider so many conditions as non-existent. I obviously didn't understand what you were saying.

    When you say that people were 'claiming' their children were afflicted with such conditions, I just wonder what evidence (or even suspicions) you have for believing that they weren't?

    The reason I ask is that, in my neck of the woods, I've found the exact opposite.

    Instead of people claiming non-existent conditions, I see lots of parents who seem to me to be in denial about their children's conditions, out of some sort of misplaced shame or sense of protectiveness about 'labels'.

    I'm a former SEN techer and the mother of an adult child with autism and have done quite a bit of personal (not academic) research in recent years in the condition of Autistic Spectrum Disorders (including Aspergers, PDD-NOS, High Functioning Autism etc) All since my child was diagnosed.

    The pathetic training I was given at the start of my education career consisted of being told authoritatively that autism was either a) the result of an unloving mother or b)what posh parents called their 'retarded' children.

    My 'school phobia' training was similar. I went to a day's training about that, put on by the ed psychs, to be told that the mothers of such children were almost always agoraphobic and grossly overweight. And all we needed to do was to prise the mother from the child and all would be well for the 'school phobic' child, in school.

    Thankfully, diagnosis both of developmental disorders like autism and conditions such as school phobia has moved a long way in the last 25 years.

    So, although my instinct is always to wonder when a middle class parent describes her non-reader as dyslexic for eg (maybe they just haven't been taught how to read properly yet?) and whether a child with ODD is just really naughty, I have to slap my own hand and remember that the diagnosis of these things is improving all the time.

    Thank goodness. Otherwise we'd all still be looking at people with Bipolar Disorder and going, 'Well, he's just mad, isn't he?'{g}

    Diagnosis improves, conditions are described better and distinguished from each other better, and this means that specific therapies/teatments can be appropriately designed for each.

    Mrs Anon

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  2. I have to say, Mrs. Anon, that before I posted that piece I showed it to an Ed Psych, a couple of teachers at a special school and, most importantly, the parents of children with special needs. The Ed Psych and the teachers laughed and the parents saw nothing offensive. What I am really driving at here is children behaving in ordinary ways, for example being rough and boisterous, careless and lazy, rude and defiant and then having their behaviour treated as a medical condition, probably requiring Ritalin. I have noticed this a lot in recent years. The Ed Psych, who had never heard of autonomous home education, thought that the behaviour of some children could be caused by their lack of boundaries, which I had not thought of. I am not going to quote directly any of the posts from EO and HE-UK, but quite a few in the past have involved parents diagnosing their children with various strange syndromes. This might allow them to avoid asking to what extent their children's conduct is a result of the parenting techniques used with them. It's only a thought. I don't think that anybody who has a child with a genuine disability is likely to be offended by what I say, nor are any professionals in the field. The only people who seem to have taken exception to this are middle class, home educating parents.

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  3. Mrs. Anon, here is an example of how people use the label of Aspergers casually these days. This is a comment from my Blog made yesterday;

    Mouse said...
    Joely said: "That you have to ask why this angers people Simon beggars belief really."

    If it really isn't put on, this bewilderment, I suspect a mild form of Aspergers.

    I deplore this tendency to bandy about terms like "Aspergers" and "autistic" simply to mean somebody whose social skills aren't up to scratch! It does not bother me to be described thus, but it can be a little dangerous when people start doing it with naughty children. Imagine how Willima from the Richmal Crompton books would be regarded these days. His parents would have him on Ritalin before you could say "Child Psychiatrist".

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  4. "The Ed Psych, _who had never heard of autonomous home education,_ thought that the behaviour of some children could be caused by their lack of boundaries,"
    I think that remark speaks for itself. On several levels.

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  5. Yes well, all children behave badly on some occasions and well on others. We, as parents, are often delighted to take the credit for their politeness and cultural sensitivity, but reluctant to believe that their rudeness or selfishness have anything to do with how they were raised. Far easier to attribute such conduct to a mental illness, which is of course an increasing trend. I dare say we all know about the over-prescribing of Ritalin, both here and in the United States? As for myself, I know that my parenting skills were woefully inadequate. I can certainly see how I have managed to instill good habits in my child, but I can also see clearly how she has learnt bad attitudes from me in precisely the same way. How we raise our children does have an effect on them and casting around for explantions like MBD to excuse their actions is not likely to be helpful.

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  6. Yes, Joelly's remark was silly and if she knew how the mothers of children with Asperger's etc actually felt when such things are said I am sure she would not have made that comment.

    However, that's not really proof that there are many parents going around diagnosing their own children with imaginary disabilities.

    BTW, many times I've caught myself wishing that my adult child with austism had a visible disability, like Downs, just so people would be a little kinder towards her in her journey through life. Unfortunately, there is no quick blood test to confirm autism. The dx often comes about after *years* of the parent noticing things about their child which doesn't add up, especially when compared to their other neuro-typical children. Careful record-keeping, history-giving, days of assessment at a hospital are likely to be involved in an assesment of Asperger's.

    The comments you may have observed on the various lists (I'm not on the ones you mention) are probably made by parents just beginning to recognise that their children may be different than others. This realisation can be very tentative at first, especially if your child is not at school and can't be compared to peers or is an only or a first child.

    It is A Very Big Thing for a parent to come face to face with the idea that their child might have what is a serious deveopmental disorder, a life-long condition. There are massive implications, such as the probability that the child will never be able to live independently, so I find it extremely difficult to believe that there are too many HE'ing parents labeling their child with AS at the drop of a hat as you describe, just because they are a bit shy or whatever.

    Oh and I winced at your use of the phrase 'mental illness'. You do know that Austistic Spectrum Disorders are not mental illnesses, don't you? They are developmental disorders. Though sadly, many mental illnesses are co-morbid with ASD.

    Mrs Anon
    PS Good to know that you get so many professionals and SN parents to pre-read your posts. {g}

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  7. Simon said, 'We, as parents, are often delighted to take the credit for their politeness and cultural sensitivity, but reluctant to believe that their rudeness or selfishness have anything to do with how they were raised.'

    So true.

    Mrs Anon

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  8. I've read that teachers diagnosing pupils with these types of disorders and refusing to teach them if they are not 'treated' (read, drugged). Is this a known problem in the UK yet?

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  9. You raise a good point about whether we call Asdpergers and Kanners developmental disorders or mental illnesses. Yes, of course I know that they are not mental illnesses in the normal meaning of the word. However, things like Heller's Syndrome, which is very similar to late onset autism, is also termed Disintegrative Psychosis in the American classifications. I take your point though and did not mean to cause offence.
    I think I understand what you mean about sometimes wishing your child had a more visible syndrome which people could understand as a reson for odd behaviour. When I used to foster the kid with severe autism/Heller's/Disintegrative Psychosis I could sense people watching me disapprovingly when he ran riot. As he was black and I am white, obviously they did not think that he was my child. I could feel them thinking though, "Blasted social workers! Can't they keep these ghastly little children under control".

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  10. I've never heard of this in this country Sharon. It seems to be more the parents who are asking for the stuff. I don't know if anybody else has heard of this?

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  11. Excuse me Mrs Anon, but it was not me who suggested Simon has Aspergers.
    Re-read and apologise please?
    Joely

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  12. Joely, Sorry I misread Simon's quote.
    I have no idea who said it now.

    Mrs Anon

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  13. It was Mouse :) Thnx for the apology which is accepted.
    Joely

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  14. I have heard of many parents wanting their child to get "ritales" as they get more benefit...

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  15. Ah pstar, would this be a DLA scam you are talking about?

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  16. Put the sock puppet away now.
    Joely

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  17. what are we to understand by that gnomic interjection, Joely?

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  18. I run a message board for home educators on a site (mostly used by women) that includes lot of boards for babies and various parenting categories, including "children with special needs". The vast majority of parents who post on that board have children in schools, and there are a large number of children with issues (most of which arise in school) which may or may not turn out to be some kind of ASD or ADHD. They therefore seek support from other parents and whilst DLA does come up, the majority of pressure for diagnosis does seem to come not from the parents themselves but the schools... clearly, for whatever reason the schools cannot cope with a particular child and hope to get more funding for themselves; so if they are encouraged to claim DLA it is all down to the pressure for a diagnosis.

    I have to say that there is more mention of claiming DLA on home ed boards in general than on this special needs board that I have just mentioned. I am not making any judgement about the worthiness or not of such claims, but I do believe that the subject has become of more significance in the lives of some home educators since the govt cut income support for single parents of children over 12, or whatever the new limit is (and it goes down to ?7 next November). Having a child on the middle rate DLA thus exempts single mothers from having to sign on and look for work...so I can see why it is tempting to make a claim if you have a child with unspecified issues and you are in that position.

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  19. "It seems to be more the parents who are asking for the stuff. I don't know if anybody else has heard of this?" Certainly both children of friends and some of the parents at the autism group I belong to have at least been asked by teachers "have you asked about medication?" - so the idea is around if not as yet being insisted on!

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  20. Simon can I just ask what your connection is with special needs at the moment? I understand that you have said that you work with children with special educational needs. Please forgive me if this information is incorrect.

    Carole Rutherford

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  21. No Carole, the information is not incorrect. I act as an advocate for families in East london who have children with special educational needs. I gather that we shall be meeting on Wednesday?
    Simon Webb

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  22. Carole,
    Firing a question at you.... hope that is okay... I have an autistic daughter so do have an interest in all this...do you think that most of the parents that you represent will be happy with the SEN proposals of more support in yesterdays DSCF announcement - or more alarmed?

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  23. Yes Simon I gather that we will be meeting on Wednedsay. Thank you for answering my question.

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  24. Julie I have two autistic sons with a firm diagnosis of autism, one also has a serious visual impairment. I am also aware that some families can have a torrid time actually getting a diagnosis, which does not make their children any less autistic.

    I am in contact with parents who are all eager to comment on the SEN proposals of more support included in yesterday's announcement. I hope that by Wednesday I will have a clear picture as to what the parents that have contacted me and who I am in contact with think about this.

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  25. Carole,
    I am someone who elected to HE because my daughter's autism made school a nightmare; in retrospect I suspect that I would have enjoyed home educating the majority of my children had I even considered it (or really known about it) at the time. I do also have a profoundly disabled son too for whom school is a "good thing" - he gets 1:1 care there and there are 2 full time nurses on the staff to cope with his medical needs. So although I am someone who came into home ed as a matter of need rather than choice (we did later take another son out too for different reasons) I wouldn't change the path my daughter has taken for a moment - I can't see that she would have benefitted from any type of school (mainstream or specialised ) more than she has at home.
    That isn't always the case though with some of the families in my HE group - they do struggle to meet their childrens needs at home and some probably wish things had turned out differently for them. We are fortunate that in our area we have been able to access the ed psych service relatively easily for home educators, and the primary and adolescent mental health services, I also had good service from speech therapy even when out of school; but I know there are families who would appreciate some flexi schooling, if only to give themelves some respite care and those with children with either SLD or a learning disability would welcome more access to teachers with appropriate qualifications and to materials especially!

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  26. I have tried (and failed) to paste in this box some comments about the origins of some SEN so have emailed them to Simon. I hope he will be willing to share them with his readers.

    Sue

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  27. If you are using Firefox you need to right click in the comments box, go down to 'This Frame' and choose 'Open Frame in New Window'. You will be able to copy and paste in the comment box that opens.

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  28. "what are we to understand by that gnomic interjection, "

    What's not to understand? Put the sock puppet away please. Easy.
    Joely

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  29. You are so judgemental!. I too have a child I have managed to find ways around helping their Hyperactivity. But I don't go shouting of at other parents they are doing wrong or right. One thing works for one child and not another.
    I can hardly believe that with an attitude like yours, you even are allowed to work with children.
    Good Grief you should be sacked with an attitude like that. So you have time to joke about children's disablities while working. SICK!!!

    You provoke and deserve the comments you get. About time you taught your self some decency if you don't want flap, then don't be cruel about children and decent parents.

    Charles.

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  30. Joely, I am honestly not sure what all the talk about sock puppets is. Could you explain?

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  31. I was not joking about disability, Charles. I was pointing out that a lot of the disorders that people on the HE-UK and EO lists say that their children are suffering from are actually common childhood behaviour. I can tell you now that I find it very offensive, working as I do with families of severly disabled children, to hear the mother of a child who is late reading or who is a little more impulsive and careless than is usual, describing her child as having special educational needs.

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  32. Too many characters. I'll split it.

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  33. Part 1

    A few years back, puzzled by the wide divergence in explanations of my son’s failure to meet some of his ‘milestones’ and by the apparent lack of agreement in how his learning difficulties should be supported, I read a book on inclusion. The authors, both as far as I can ascertain respected academics working in education, were of the opinion that the some of the perception of children with special educational needs as being qualitatively different to other children arose from an unproven assumption that there was some inherent abnormality in the child’s brain.

    The example they cite is ‘phonological awareness’, questioning the existence of such a phenomenon. Their understanding of how the brain works appears to be derived largely from the work of philosophers, with a nod to biology in the form of Lashley’s work on engrams in the 1940s, and Wittgenstein’s thoughts on cell differentiation (or not) in seeds, although more recent work questioning the concept of innate abilities does get a look in. A similar critique of brain research has been published by an eminent Oxford philosopher.

    A problem is that the students of Thomas, Loxley and Hacker do not rush off to check these assertions against work by people who spend their days comparing MRI scans or mapping brain tissue under a microscope, because they don’t have the time or possibly the inclination to do the necessary crash course in biology. However, they show no reluctance in inflicting their lack of knowledge on small children who might have had an undetected ear infection as toddlers or whose glutamate levels might be a bit variable. Auditory processing abnormalities are not uncommon in young children, many of them originating in the narrowness and angle of the Eustachian tubes, leading to frequent infections. And of course complex auditory skills such as speech processing depend on reliable auditory input, as does auditory attention and working memory, essential pre-requisites in the modern school.

    Fine-grained auditory processing difficulties are not generally picked up because they are not tested for unless the child has significant problems with speech and language. So mothers of every social class can find themselves with a child who, for no apparent reason has significant problems with concentration and comprehension absent in his siblings, and who then gets a label of ADHD or being badly behaved or worse, depending on the opinion of whoever bestows the label. Of course, middle class mothers are much more likely to read up on their child’s symptoms, so the conclusion mothers from different social groups come to might be a function of their educational level rather than their denial that there can be anything lacking about their child. Which brings us to the ‘cryptic letters’ to which you refer. I think what you are actually criticising is the outmoded categorisation system used by psychiatrists for what are broadly referred to as ‘mental disorders’. You are right to do so. This system, and often the practitioners who apply it, are 150 years out of date and in urgent need of what I believe is euphemistically called ‘modernisation’. (Why is it, I wonder, that psychiatry appears to have escaped the Blair/Brown modernisations?)

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  34. Part 2

    I want to emphasise that although the psychiatric taxonomic system might not be fit for purpose, this does not mean that the children who acquire labels through it do not experience developmental, learning and behavioural problems of organic origin. Many children with Alphabet Soup syndrome have subtle sensory abnormalities; in my son’s case, his large saccadic eye movements mean that although he can read using whole word recognition, novel words and spelling present significant problems, because he cannot reliably track the position of the letters within the word. Ironically, like many other children with similar difficulties, he would not have been seen as having an Alphabet Soup Disorder or even special needs at the primary school I attended in the 1960s, since all pupils there were seen as having a unique range of strengths and weaknesses that were developed or supported as appropriate. Of course there is no clear dividing line between a child with SEN and a child without. Many children who are slightly unco-ordinated and clumsy may actually have the same cause for their poor co-ordination as a child diagnosed with dyspraxia, but in the former the clumsiness is not sufficiently severe to impact on their ability to participate as expected in school life.

    Now a word about ODD. There’s a book about ODD by Philip and Nancy Hall called “Educating Oppositional and Defiant Children”. I borrowed a copy from the library because I thought ODD was such a daft name that I wanted to see how anyone could possibly justify its use. I was surprised. What is apparent from this very insightful and practical volume is that children diagnosed with ODD might or might not have a ‘condition’ and might or might not have the same ‘condition’, but they clearly have visual and/or auditory abnormalities and Hall & Hall share some very practical strategies for coaxing these children into developing sound interactive relationships with their parents or peers.

    I’m happy to continue this discussion if you are interested.

    Sue

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  35. Dear Sue,
    Sorry I have not yet got round to responding to you. I was looking through my old stuff and came up with the sort of thing that you seem to be talking about. A child of almost four had not yet started to talk. His hearing had been tested and so that was not the problem. He seemed to have difficulty not just with expressive language (talking), but also with receptive language (understanding). He was very active and easily furstrated and a provisional diagnosis of MBD was made. This was over twenty years ago. MBD stands for Minimal Brain Dysfunction or Minimal Brain Damage. A beautiful diagnosis, because of course it is impossible to prove or disprove. In other words, the child's problems were assumed to be neurological. If the child's mother had left it at that, she would have simply accepted that her child suffered from MBD and that would have been the end of it.
    I wonder if you would care to guess what the real nature of the problem was? It actually required a simple operation to cure. In fact he had Glue Ear. The gunk in his ears was not draining properly and so grommets were fitted. This worked perfectly. When he had his hearing tested, it was one of those times when his ears were OK. Later, when he was being tested, he was, in essence, deaf. So the assumption was made that he simply did not understand what was being said to him because he had some sort of learning difficulty.
    I loved the reference to Diary of a Nobody. How long have you been a fan of the Grossmiths? Have you read the very clever seuqls written by Keith Waterhouse? If not, you might enjoy them. I have to say that my wife chuckled over your post!

    Simon.

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