Friday, 1 October 2010

Home education and autism

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

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

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

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

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

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

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


  1. Well, as I have mentioned often enough before- I actually have 3 disabled children - an autistic 18 year old who we did home educate, a son of 17 with SLD, cerebral palsy, microcephaly etc and a 23 year old with a rare genetic condition which affects skull growth and who is also deaf. These 2 went through the school system (the 17 year old is still at a special school). I have some pretty clear views as to why we home educated our autistic daughter and not the other two.....

    1) The education system for children with autism can be pretty bad. This is partly because it can be an invisible and dificult to define disability whose effects may change over time. This is most marked if the autism isn't associated with a huge mental inpairment - so the children are in mainstream schools, but never fit in.
    2) Removing an autistic child from school can have an almost "magical" effect on their bhaviour at home. The stresses of school life, dealing with lots of people spill over to home; getting rid of that issue makes all the family a lot happier. I wasn't hoping for a cure for autism when I removed her from school; I wanted to make it possible to learn and to improve the quality of all our lives.
    3) If you have a child with SLD or a physical disability, they are usualy identified and labelled from a much earlier age. (In the case of our 2 boys, the issues were obvious from birth). They are therefore more likely to be in specialist educational provision early- sone with SLD was at school from 2 years old (he didn't live with us then.) Older son went (like my dd did) to an SN nursery, but started school with a statement, which gave him full time LSA cover. Starting school was therefore much more successful ; but most AS children don't get anywhere near enough support at school, especially in the early years, so school is more likely to be a disaaster.
    4) IN general the educational provsion for children with bobvious disabilities is better throughout the whole age range. Having been to a mainstream primary, older son went at 11 to a school with a hearing impaired unit; there he had 12 hours a week 1 to 1 support from an qualified teacher and 15 hours from an LSA plus all sorts of whizzy extra communication equipment (including a laptop from Becta - a rare phenomenon 12 years ago).I haven't seen such support given to most (any) autistic children). My 17 year old's special school is wonderfully equipped with an almost 1:1 staff child:pupil ratio, 2 full time nurses always present, sensory rooms, hydrotherapy pool and so on....
    Finally, caring for a profoundly disabled SLD child is challenging and exhausting even when they do go to school. I am sitting here only to aware of the tasks ahead to keep our son safe and happy today- a Saturday.... I could never cope without school. Holidays are a juggling act of momentous proportion. It may be poitically incorrect to regard school as a child minding service; but I make no apologies for doing so!
    It should not be surprising therefore to find that most SLD children are in school, but many AS children are home educated! For my dd I knew we could do better than school, but for the other 2, I am pretty sure we couldn't.

  2. 'I am wondering whether it might be the case that those whose children have a definite, obvious and lifelong handicap come to accept this more readily than those whose children have autism. '

    My adult daughter has a definite, obvious and life-long handicap (although it's now called a disability). It is called Autism.

    Mrs Anon

  3. Simon said "some day something might 'click' and they will see a dramatic improvement in the condition."

    - but the point is that home education (for many AS children, I am sure you can't generalise) doesn't "cure" anything, but does give the families enough time with the child to try and help them understand how the world really works and how to cope with it. School meanwhile can cause more difficulties with the sorts of behaviour and anxieties that occur particularly when dealing with lots of other children.

    I have said before that my daughters massive speech delay disappeared within a couple of years of home education; we followed the same speech therapy programme as school had done, but spending a lot more time with patient adults rather than children who wouldn't wait for her to "find" the right word must have been a crucial factor. Most home educators (including yourself, Simon) recognise that HE is much more time effective than school; so with the spare hours in which we didn't sit down to more bookwork (because we had done it twice as fast as a class would) we spent time reading aloud, being together, sitting under trees drawing them, and so on - so much much more adult - child 1:1 interaction.... which reaped obvious benefits.

    That isn't parents of ASD children looking for a cure, but it is parents helping their children to develop their full potential

  4. I agree with Julie. My feeling is that my DD (showing ASD tendencies) would have had a much harder time in school. EHE allowed me to concentrate on what mattered to us - that we could have a pleasant family life where everyone's emotional needs could be met and we were not dealing with pressures caused by needing to conform to a system.

    And before anyone suggests that a parental "diagnosis" of ASD is worth nothing and may be parent looking for excuses, I have no hesitation in saying that my DS is neuro-typical. I have read vast quantities of ASD literature over the years which would back up my observation.

  5. 'My adult daughter has a definite, obvious and life-long handicap (although it's now called a disability). It is called Autism.'

    My point was of course that many people have in the past not viewed autism in this way and treated it as a temporary disorder which can be cured.

  6. I just wanted to say that I completely agree with Julie.

    The other thing that I think may be a factor is that the milder forms of autism such as aspergers often don't get diagnosed until the child is at least 7. I may have mentioned before that our DS is currently being assessed, the various people he has seen so far have said that alot his behaviours 'scream' aspergers, we are using various techniques that are used with children who have aspergers with great success but we have been warned repeatedly that the psychologist who will make the final decision will probably refuse to give a diagnosis until he is 7, he is 5.5 now. I have tried to find out why this is and have been told it's because he might grow out of it. Ok fair enough he might but it's going to be a pretty big jump in 18 months. I understand that it must be incredibly difficult to make a diagnosis and nobody wants to label a child unnecessarily but if my DS was in school he would be left to just get on with it a for another 2 years before a referral was made and then in all likelihood it would take at least a year from referral to diagnosis so my DS would have had to spend at least 4 years in school without the appropriate support. My DS has a friend with downs and because it is a clear and definitive diagnosis he has 1:1 support all day every day at school and is happy, thriving and learning.

  7. I am currently working with an organisation for Adult Aspergians. They state that they are not "disabled" just not "Neuro Typical" and that the education system is set up around those who are neurotypical meaning that it doesn't suit those "on the spectrum" or dyslexics for example.

    Could the idea that the mainstream education system is not set up for "non-NTs" be the main reason that parents who have aspergian or autistic children choose home education????

    In my experience this is the usual reason in such cases.

  8. Yes, the dx for Downs is clear. A blood test is taken soon after birth if it's suspected and it's there, written into the child's chromasomes, in every cell in her body.

    People with ASD can sometimes have to wait years (my dd was 14) before someone feels forced to assess them.

    Alison, all the adults with AS I know are VERY aware that they are disabled. I'm off this afternnon for a social activity with about 15 of them and it's harrowing, what some of them go through on a daily basis, trying to do what we all take for granted.

    Very aware of this this week as I've had to talk down a 21 year old woman from suicide several times this week. Let's not kid ourselves with fluffy words that they are simply 'differently-abled' or non-NT. All that's true, but they also live daily with a serious life-long developmental disability that makes their lives very hard.

    Of course schools can't cope with them. The ones who manage to stagger through the school system are often the most damaged.

    Mrs Anon

  9. 'Autism' is a set of behavioural characteristics. All kinds of things can cause those characteristics. Whether or not the autism can be cured or not will depend on the cause. Whatever the cause, autistic characteristics can change with time and with environment.

    I agree with Julie and Alison that the main reason that parents home educate autistic children is because the education system doesn't make reasonable adjustments for them, whereas parents whose children have a more obvious disability stand a better chance of accessing appropriate educational provision.

    In my experience, parents who are looking for a 'cure' tend to be those whose children have quite severe impairments and who are more likely to be in special schools. Those whose children are home educated often function quite well in an environment better suited to them and so a 'cure' isn't so much of a priority.

  10. 'In my experience, parents who are looking for a 'cure' tend to be those whose children have quite severe impairments and who are more likely to be in special schools.'

    Just to add, they are also often children who developed autistic characteristics after a period of ostensibly normal development, so the parents' perception, which might well be accurate, is that their autism is the result of environmental factors and can therefore be reversed.

  11. "I have no idea whether this hypothesis has any merit, but if it has none, then there must be another reason for the number of autistic children one hears of being educated at home."

    School (as it is currently) is unsuitable for most children, most manage to fit in by having the corners knocked off them. I see AS children as some of the sensitive canaries in the mine. Their parents can more easily see the unsuitability of school than can the parents of NT children.

    One problem for NT children is they are overly social and fit into crazy social environments like school too easily, thus leading to personal suffering, constraints on learning and further damage to our society. (coming at this from the "NT is a disability too" perspective, tongue slightly in cheek here)

    May not be relevant here but Asperger himself described the condition as "extreme maleness", it is a spectrum. Those towards the AS end of the spectrum are less likely to find school suitable, they may be more likely to have parents who are not NT and can think out of the box. That might be one reason there are more of them in the HE population than the school population.

  12. i totally agree with julie,
    i have a daughter due to move to seniors in september, she has a diagnosis of urticaria pigmentosa which means she has numerous allergies that cause skin conditions such as rashes and blisters, she has pollen allergies and suffers from rhinitus which is aggravated by the heating in the house, she has been diagnosed with adhd, asd trates a learning disability she has high anxiety levels and massive sensory issues and she doesn`t sleep at night, due to these problems she has been put on medications to help her and they have improved some things for her but she has serious difficulties coping in mainstream school, she doesnt socialise with the other children and has no friends at school, she is a very bright girl but i feel school is holding her back because she cant cope with the enviroment she is in and yet the school say she doesnt require statementing where they get that from i dont know because she is in yr 5 and yet the work she is having to do is for yr 1 so straight away i can see a problem, they say they can meet her needs then why after all these yrs hasnt she caught up and still cant accept being around other children she wont even go to childrens parties and she doesnt even like to socialise with her own direct family, they have messed it up twice when i put in for a statement of educational needs because they say they are not allowed to comment on medical issues well i say why not if its her medical issues that are affecting her being able to cope in school, i am so angry and frustrated right now and i am waiting for a hearing for the appeal of her statementing, she only learned to read and write over the last 2 yrs because of me im seriously looking at taking her out of school and teaching her at home but dont know where to start as i have never done this before, i have 4 daughters and 3 out of 4 have different levels of autism one of them has severe disabilities which i feel has labeled her and people look at her and see disability the other 2 have no physical disability on the outside there for it appears they are so called normal, i have tried so hard but feel i am failing my children if i dont take them out before its to late and then i cant reverse the damage mainstream school is inflicting on my daughter. :(

    1. My daughter has sensory processing disorder traits of asperges & traits of add. School was a disaster! Home ed has been the best choice I ever made. Having a diagnosis for your child works both ways schools are happy to have ltd expectations. Taylor made learning can only by a good thing. Anything to do with the brain is a soft science, and yes I've tried everything and anything to help my child I've spent money I shouldn't have on treatments that I now feel are nothing more than scams praying on desperate parents. However thing are better than they were, because symptoms do get better with time. Simon you write like there is no point in doing all you can. Is it not something as parents we are obligated to do? In my opinion if a parent feels home education is a better option for their child it probably is! A lot of people are still so ignorant of these conditions. We have a life again, no more letter writing, appointments, professionals, sleepless nights. Simon having to answer skeptics is exhausting if your a parent of one of these children. Going shopping is exhausting. Getting them in the bath is exhausting. Their obsessions are exhausting. Feeling guilty because it affects their siblings is exhausting. Etc etc. Why not try writing something supportive?

  13. I know I'm coming late to this. This is my experience. In children with ASD:

    1. The school environment causes extraordinary levels of anxiety
    2. Anxiety causes behavioural problems

    Take away the school environment and levels of anxiety and distress fall dramatically, as do behavioural problems.

    Why wouldn't you home educate them?

  14. Just to add to this - hence, parents are generally not seeking to cure autism. They are seeking to stop causing their children unnecessary distress and anxiety - like any parent.

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