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.