Saturday, 23 July 2011

Home educated children on the autistic spectrum

Anybody pushing a child around in a wheelchair may expect generally to receive favourable treatment from the public. People make allowances, move aside and are tolerant of odd behaviour from the person in the wheelchair. It is clear that a disability is involved and so passers-by wish to appear accepting and compassionate. How very different is the attitude encountered if one is with a child who looks like a little angel but who is prone to snatching things away from other children and pushing them over if they object. The indignant looks which parents or carers receive, particularly if they are trying to extinguish such behaviour by not reacting to it when exhibited by the child in question. The kid may have a disability every bit as real as the child in the wheelchair, but of course autism does not show in the same way. The challenging behaviour is perceived as aggression or sheer naughtiness. An unspoken assumption is that it is being tacitly condoned by the adult caring for the child, especially as I say if the adult reacts calmly to the apparently bad behaviour of the child. Other parents will mutter to each other, ’Little thug! And his mother didn’t say a word to him, didn’t even tell him off!’ Useless to explain that shouting at a child on the autistic spectrum will just make everything ten times worse.

One can see why parents who have to endure this sort of thing every day might get a little ratty with those who do not understand the special difficulties which their children have. One can quite understand why they might get irritated when a local authority officer offers well-meaning but foolish advice for dealing with a syndrome about which she so obviously knows nothing at all. To that extent, one can see why some home educating parents of children on the autistic spectrum resolutely refuse to have any dealings with their local authority. There is however another side to this; one which many home educating parents don’t see.

Living with a an autistic child can be an absolute nightmare. In addition to the autistic features, the child might be hyperactive, need little sleep and have a variety of extremely odd habits. One child might have an obsession with collecting shoes and throwing them out of the window. Just imagine that, if you live on the tenth floor of a tower block and are cooking a meal. Your baby is asleep and you realise that your non-verbal eight year-old has managed to get a window open and throw everybody’s shoes out! What do you do? Do you wake the baby and make a family trip downstairs to collect the shoes? The lift is out of order again, so this is no slight adventure. Although you know he can’t help it, won’t you get the tiniest bit irritated at this sudden emergency caused by your child? Or suppose that your daughter has an obsession with laying bottles on their side, because seeing them standing upright makes her distressed? There you are, just getting ready to watch Eastenders and you discover that she has laid a large bottle of cooking oil on its side and the kitchen floor is now awash with the stuff. Ready to snap yet? Of course, some parents do snap. They hit their children or lock them up out of the way in their room. I have seen an autistic child’s bedroom with a padlock fixed to the outside to keep the kid from wandering in the night. For some of these parents, having the child at school all day is the only thing keeping them from going mad themselves. And on top of this, they also need respite care as often as they can get it at weekends.

Children like this are at a greater risk of being hit by their parents. I am not talking about a measured smack, either. I am talking of all the frustration and grief boiling over until the parents beats the child. This sort of thing happens and is a hazard to children with certain syndromes. If a parent who is just about coping were then to have this difficult child with her all day, it is a racing certainty that she would snap at some point. This is not to say that they do not love their children, but nobody who has not spent time with such children can have the remotest idea of the pressures that are at work. A result of this is that when the parent of such a child announces that she is rejecting all future help and will from now on be spending twenty four hours a day with her child; alarm bells start ringing.

I have spent a good part of my life working with both children and adults with various problems and used to foster a five year-old kid with Heller’s Syndrome; a type of late onset autism. By the end of the weekend, I was almost at my wits end. Often, the fears and behaviours of children and young people on the autistic spectrum are not at all accessible to reason. One cannot sometimes explain to them that there is nothing to be afraid of on an escalator going down to a tube station. They might simply go mad with panic and claw and bite until you take them out of the station. Or it might be something else entirely that causes problems. I know that I could not spend twenty four hours a day with some of the children with whom I have worked and I know also that their parents too would be unable to do so. This is one reason why local authority officers are sometimes a little concerned about a decision to home educate such a child. Some parents here have expressed annoyance at the ignorance of these people, but in a sense, the more that they know, the more that they are likely to be uneasy about the idea of home education.

22 comments:

  1. However, this kind of autism (non verbal,v aggressive, v challenging behaviour) and this kind of parent (ready to snap) is not a combination which readily leads to home education. In my experience, I've never known this combo. Most parents in this postion would welcome school as a break.

    I think you are thinking of a very unlikely scenario.

    Parent of adult child with HFA who was happily HE'd for 12 years.

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  2. 'One cannot explain to them that there is nothing to be afraid of on an escalator going down to a tube station.'

    Well, you can. I did with my child. You just have to do it frequently and patiently. Perhaps not all ASD kids will respond, but mine eventually did.

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  3. 'I think you are thinking of a very unlikely scenario.'

    I'm not thinking on a scenario at all; I am describing what I have witnessed myself.

    Simon.

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  4. 'Well, you can. I did with my child. You just have to do it frequently and patiently. Perhaps not all ASD kids will respond, but mine eventually did.'

    And of course this is perfectly true, there is huge variety in the way that individual children react to the things which disturb them. I have lived and worked with adults on the spectrum though who would go wild at the sight of splashing water, react with terror to dogs and lash out violently at anybody wearing glasses. these behaviours exist in children as well as adults and sometimes make life with the kid almost unendurable. I have also known the parents of such children take them out of school and then be worn to a frazzle just trying to keep on top of things. I am not talking about all children or all parents; I am saying that the things I talk of above happen and that some local authority officers get anxious as a result about the ability of parents to cope twenty four hours a day.

    Simon.

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  5. Have you got any statistics about the number of autistic children assaulted by parents? I know a horrifying number end up being killed by their parents, but as far as I am aware none of them have been home educated and these were the actions of people who had begged and pleaded for support for years and been ignored by the same services that you say are 'concerned about a decision to home educate a child.' before snapping. I believe several judges have pointed this out very eloquently, and made it clear where a proportion of the blame for a child's death lay and how dedicated these parents have been until they reached the point when they could no longer cope . The 'concerned' people to whom you refer then announce inquiries, express regret... and seem to go on exactly as before.

    You may not be aware of a recent National Autistic Society report that higlighted the delays in arranging appropriate provision for autistic children and the chronic shortage of appropriate facilities and the effect that these shortages have on the children's behaviour at home and at school. One part of it that interested me was that none of the parents in their survey who home educated felt that they had come to it as a free choice, but that it had been a response to a lack of provision by those people who are 'concerned about a decision to home educate the child'.

    Obviously, this does not reflect the position of everyone in the HE community. I know many who made a choice at the outset to avoid a failing education system. In hindsight I wish I had done the same. What it does show up those is that those people who are 'concerned about a decision to home educate the child' are not concerned enough to ensure that proper provision is available in schools. Or respite care. Or speech therapy. Or any form of support whatsoever. Their lack of concern condemns a child to 30 or so hours a week in a totally unsuitable environment and may well be a major cause of the type of behaviour you describe (which I do recognise, because my son was like that when he was at school. Four years later, like many other HE children with a similar diagnosis, he is no worse than any other stroppy, argumentative 8 year old as long as his sensory needs and need for explanations and routine is respected.)

    If a local authority is 'concerned about a decision to home educate a child', then may I suggest that they look at why that child has been removed from school? You have posted in the past about supporting parents whose children have not received the support and care that they not only need and deserve, but that a council is paying a school substantial sums to provide.

    Being 'concerned' is cheap. Giving 'well meaning but foolish advice about a situation about which they know nothing at all' again costs very little. Writing posts like this puts you firmly into the 'well meaning but foolish' category.

    Frankly, Simon, given your experience in working with people with autism, I expected a lot better than this of you.

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  6. The majority of children with ASD who are home educated though exhibit tend to be either those who are "higher functioning" ( like my dd) or who have quite appreciable learning difficulties and who are often passive.

    Those of us with children in the former category have often withdrawn their children from school because we know that we can do better educationally. With lots of adult input my dd's speech deficit corrected it self within a year - she went from being about 5 years "behind" to a more average level. She went from sitting in a corner colouring everything blue at aged 8 to a girl who has achieved a huge amount academically. No it isn't all perfect - and she is clearly still "autistic" if you spend more than a few minutes speaking to her, but I am sure many parents in my situation made the decisions for similar reasons.

    I do know a few ASD children with much greater LD and whose behaviour is more challenging, but taking the child out of school has improved that behaviour enormously, and in addition having come out of special school, not only do the children have statements which are maintained and reviewed (which should reassure you Simon that the children are "seen"!) they also have some social work input. However it is evident to all that without school, the children’s lives are much happier and so the stress on the parents is less.

    I wonder Simon, whether this post is prompted by the SCR
    on the autistic boy from your side of London whose mother killed him? I would remind you that we have also just had a court case on another similar "murder" in Wales- but that boy was in school, so HE can't have been a common factor. I think I am right in saying both mothers did have mental health issues??

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  7. Couldn't agree with you more, Julie, and thanks for putting it so beautifully. My 2 are both still autistic. They always will be. At home they are learning to cope with what is to them an alien and illogical world and can shut it out when they need to. It's not perfect, but no parent I know has a 'perfect' child. It's simply a whole lot better than it was, which is enough.

    And thinking about Simon's post some more - the child in the tower block shouldn't BE there! Those 'concerned' people should have made sure the family had appropriate accommodation- at the very least at the bottom of the tower block. Or were they not quite 'concerned' enough?

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  8. This post was in response to the comments of some parents with children on the autistic spectrum who feel that local authority officers are unsympathetic or hotile about their decision to home educate. I am aware of the lack of support which leads some parents to take this step. However, the people at the schools or in the local authority who have let them down are not the same people as the officer who turns up to ask about the educational provision which they are making. I am explaining why such people might exhibit certain concerns; not saying that I agree with them. I was simply trying to put the other side's point of view here and do not wish it to be thoguht that I always agree with this point of view.

    I don't think that children are more likely to be killed or beaten by their parents if they are home educating; I am explaining where the anxieties come from in loal authorities about these things.

    Simon.

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  9. 'And thinking about Simon's post some more - the child in the tower block shouldn't BE there! Those 'concerned' people should have made sure the family had appropriate accommodation- at the very least at the bottom of the tower block. Or were they not quite 'concerned' enough?'

    I could not agree with you more. The fact is though that they were there. The shortcomings and slackness in the Housing Department are another thing entirely from the duties of an officer charged with keeping an eye on home education. If such a person encounters a situation, no matter how it arose and despite the fact that his employers may have been partly responsible for creating that situation; he may still feel worried about the ability of a parent to cope.

    Simon.

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  10. walking here with a smile.. have a nice day ~ =D

    Regards,
    http://www.lonelyreload.com (A Growing Teenager Diary) ..

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  11. This seems as good a place as any to mention a specific incedent relating to an ASD child, seeing as it petains to your first paragraph, Simon. I hope I might be able to get a few responses please with how to deal in this and similar situations.

    When my child left school she was withdrawn and needed to control her experiences (i.e. she didn't like strange people touching her, talking to her, taking her things) We went along to a HE group for the first time and there was an ASD child there for the first time also (don't ask me for specifics, all I knew was the child was 2 years behind developmentally).

    This child proceeded to take her unbrella, which caused her great distress. Now, WWYD?

    The parents of the other child didn't want to try to take it away because of the situation that would ensue. I, however, was rapidly approaching a situation of my own, with a child distressed at it being taken and fearful that it would be broken. Good manners meant I asked whether she could have it back, but I didn't push.

    These days my daughter has become much more relaxed about things such as this, and understand that if she takes something somewhere, someone else might want it. Now she never takes her things to groups. She learnt a lesson from it, but I thought it was unneccessary. If they had taken it away straight away I would have put it somewhere no child could have it and problem solved but it became such a drawn out process that both kids ended up pretty irate.

    That family never came back to the group. What would have been better for everyone?

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  12. 'That family never came back to the group.'

    That about sums up the experience of many HE parents with spectrum kids. Thankfully, at last, in our area at least, they are finding creative solutions to the problems of HE groups.

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  13. 'However it is evident to all that without school, the children’s lives are much happier and so the stress on the parents is less.'

    This is true and also my experience. This is another reason why LA idiots who think they know something about autism would not be welcome in the homes of many HE families. Until they understand certain basic facts, such as this, they will keep making idiotic assumptions about HE.

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  14. 'Have you got any statistics about the number of autistic children assaulted by parents? I know a horrifying number end up being killed by their parents, but as far as I am aware none of them have been home educated and these were the actions of people who had begged and pleaded for support for years and been ignored by the same services that you say are 'concerned about a decision to home educate a child.''

    Let's also not forget the children pulled from special schools because they were being abused in those very institutions!

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  15. Simon

    You say that the people who turn up to ask about educational provision are not the same ones who failed them. Could you explain how you reached this conclusion? Because my children have statements I still have annual contact with the same 'charming' pair who failed my children totally at school, and who continue to judge my provision even though I have now had 3 separate complaints against them upheld.

    Maybe they are separate in larger areas, but in smaller ones they are not.

    And as for your other comments, I thought we were meant to have 'integrated services'?' If the council officer is 'worried about the ability of a parent to cope' then I suggest that he/she/it talks to their colleagues and does something useful to help them. There are, after all, Government guidelines that say that the Council should look to SUPPORT children with SEN being home educated when such a support would make a difference to the parents ability to HE.

    What you seem to be saying is that councils feel they should particularly scrutinise the parents of all autistic children because some of them may have difficulty coping. Would you care to rephrase that swapping the word 'autistic' for the word 'black''? Or maybe 'Muslim?'

    Doesn't sound so acceptable then, does it?

    I appreciate that you are 'putting the other side's point of view.' I hope, in return, that you will appreciate that this post will arouse very strong emotions in people who have experienced long term prejudice from the staff you are defending.

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  16. "'That family never came back to the group.'

    That about sums up the experience of many HE parents with spectrum kids. Thankfully, at last, in our area at least, they are finding creative solutions to the problems of HE groups."

    Thank you for the examples of creative solutions, 'What would have been better for everyone?'

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  17. 'What you seem to be saying is that councils feel they should particularly scrutinise the parents of all autistic children because some of them may have difficulty coping. Would you care to rephrase that swapping the word 'autistic' for the word 'black''? Or maybe 'Muslim?''

    I was, needless to say, suggesting nothing of the sort. I was actually trying to get across the idea that when a child displays many challenging behvaiours of such a type and intensity that even the school has trouble coping with them, then the idea of the parents being with their child for twenty four hours a day raises eyebrows sometimes. Many such children are on the autistic spectrum. This is not really my view and I have helped parents to remove their children from special schools against the advice of the 'experts'. What I was doing here was putting the case as presented to me by these people, without comment.

    Simon.

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  18. RE ASD and umbrellas

    Creative, my solution isn't, but I've learned to accept that things sometimes go wrong. I hate it when it happens because I feel as if I've failed because I should have been able to foresee the 'trigger' situation and stop it. Of course, if I could do that, then I could also foresee the winning lottery numbers and an awful lot of other problems would be solved too!

    ASD children are more fragile and vulnerable than most and it's an incredible tightrope between stopping their self-esteem being squished on a regular basis and not doing all we can to help them prepare to be as independent as it's going to be possible for them to be. So if we fall off occasionally, then it's actually a miracle that it doesn't happen more often.

    I think I'd have remembered an urgent appointment somewhere else, retrieved the umbrella because we 'had' to leave, and stopped off somewhere nice by the child's standards on the way home to make it clear that they hadn't failed. Then I'd have tried again the next week without the umbrella.

    A psychologist friend once pointed out to me that you wouldn't go into a Rangers pub wearing a Celtic scarf when the two teams were playing. You'd assess the atmosphere, realise that staying would be a health and safety hazard and go somewhere else. Nor, was his theory, should you leave an ASD child in a situation where they aren't coping. You get them to a safe place, then replan and go back in better prepared so that they experience success, not failure. We view going into a HE group as a success and don't expect to last a whole session if it's noisy. I swallowed my pride and explained this to the leader at the start and they're fine about them joining in as much as they can on that day. It's frustrating sometimes, but we are moving steadily forward even if it sometimes feels as if we're going at a snail's pace.

    I think Simon's right about one thing. (Well, it's probably more than one, but one definitely in this post.) It would be so much easier if you could SEE autism!

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  19. Thanks for clarifying, Simon. I am relieved that it isn't your opinion. One last thought. You say 'even' the school has difficulty coping with them. Could this be because the school is not the right sensory environment for them, so they are inadvertently exacerbating the problem?

    Even with mature adults such as yourself, a day spent in a place you hate, doing tasks you do not understand the relevance of and that end just as you are getting into them while surrounded by smells, sights and sounds that are too intense for you and with no way to escape is not likely to leave you in a cooperative mood by the evening. A week of that makes you high on a Friday night because you've escaped, and progressively grouchier as the weekend speeds by and you know you'll be stuck there again for another week.

    Many children who are unbearable after a day at school (of which I sometimes had 2!) calm right down after 6 weeks or so at home when they start to realise that they can have some control over their sensory inputs. Then, once you've got a stable child, you can start to increase the inputs, with them knowing they can stop and pull back if they need to. I am not saying it is a cure. Like all children, they have their moments, but there are nothing like as many of them now they aren't in a hostile environment for 39 weeks of the year.

    The only environments I can think of where you are forced into such close contact with so many people in adult life are prison or a war zone and I suspect that the behaviour you report is as much linked to combat stress as autism.

    That child stuck on the top floor of a tower block is not likely to get as much of a chance to run off his energy in a safe space as he needs. All that energy then goes somewhere... and the old saying 'the devil finds work for idle hands' is all too true.

    I'd be very interested in your experience of inner city autism as opposed to mine of small town autism with easy access to a large, mostly traffic free park where a child can run off excess energy and a trampoline at home where they can do the same as necessary. The image you conjured up reminded me of rats trapped in a cage, gnawing at themselves and made me feel thoroughly sick.

    So if I seem more passionate than usual, then please put it down to anger at people who stand back and allow that to happen to children when there are so many simple, cheap things you can try. I have a sneaking suspicion that you might even feel that anger yourself sometimes. If you could somehow get this across to those officials who have voiced this point of view, then you could make such a difference.

    I am not saying HE will cure everything. I am saying give it a chance if the existing system isn't working and support rather than assume that it'll all end in tears. So often I have come across the attitude 'well, if we can't do it, you certainly can't.' when I can do it because I am NOT a teacher or a health professional. At its extreme you are left with the suspicion that people would rather a child failed conventionally than succeeded outside the system.

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  20. 'At its extreme you are left with the suspicion that people would rather a child failed conventionally than succeeded outside the system.'

    Ain't that the truth.

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  21. That's not my experience of people, they're simply not that opinionated on the subject. They tend to be rather underinformed about the Autism spectrum when it doesn't affect them directly, it is a very complicated field.
    I feel that your suspicions are informed by those who are similarly underinformed but have political motives to maintain.

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  22. "That's not my experience of people, they're simply not that opinionated on the subject. They tend to be rather underinformed about the Autism spectrum when it doesn't affect them directly, it is a very complicated field.
    I feel that your suspicions are informed by those who are similarly underinformed but have political motives to maintain."

    You could well be right. Usually I am too busy biting my tongue and resisting the urge to shake them warmly by the throat to look deeply into their motives! I just have this strange, old-fashioned feeling that people who are paid to provide a service should actually be capable of doing their jobs properly. If that job includes assessing the suitability of educational provision for a child with autism then they should look at sites like the National Autistic Society and get a basic idea of what that child might need before offering their 'wisdom'!

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