Mar. 16th, 2007

margaret_r: (bridge)
My friend Alex [profile] alexhogan has a 9 year old son, Shannon, who is autistic.  Life isn't always easy for Shannon, his mum and dad and his older sister but Alex and her husband do a wonderful job of trying to make life as normal as possible for all of them.  Alex has written an essay that gives some insight into what it means to be autistic.  She has given me permission to reprint it here.  

Thanks Alex

THIS IS ALEX'S STORY:

I am sure that some of society's crime problems are due to unrecognised mental disorders - unrecognised because work in that area has only been progressing since the late 20th century. I think ADHD was only recognised in the 1980s or 90s, or at least to any large extent. I know high functioning autism and aspergers syndrome has only been recognised to a large degree in the 1990s, before that time only severe autism was diagnosed. The figures used to be 1 in 3,000, now it’s 1 in 300 or less. My son is a high functioning autistic, and if he had been born ten years earlier would not have been diagnosed, he would have been considered an unco-operative ‘dreamer’ and we would have had severe discipline problems with him, because we would have been parenting him inappropriately and expected behaviour out of him that he would not have been able to comply to, hence he would have ended up with behavioural problems at school and presumably in adulthood. (eg: it took us 2 years to toilet train him.)

Because of the widening of definition of autism and more detailed understanding of other develomental and behavioural disorders, there are far more people diagnosed with these disorders. Some people in society, who have no expereince with these disorders, seem to think the increased diagnoses is a problem. I guess on the surface it does sound like it - why suddenly are there so many diagnoses when there weren’t before? Is it because suddenly medicos have “invented” a lable to tag badly parented kids? No - these disorders have always existed, but were not recognised and understood, therefore a mildly autistic boy was seen as an unco-operative dreamer, and an ADHD child was seen as naughty and cheeky and disruptive. The increase in diagnoses has come about because now these people are finally getting the chance to have their behavioural disorder recognised, and helped. So the increase in diagnoses is good. I am grateful for it. My older brother is very similar to my son, but has no diagnosis of autism, because mild autism wasn’t recognised when he was a kid. His childhood, education and life has been very difficult, and my mother has searched all her life to find out why.

When you get such a diagnosis for your child, a parent is victim to many thoughts, one of them being guilt, “is it my fault?”. It isn’t helped by strangers who see you with your child in the street and assume they know more about parenting him than you, who have been with them 24/7 since the day he was born.

I know that attempting to “discipline” an autistic child according to techniques suitable for neurotypical (“normal”) children will not work, but will only make their behaviour worse, and from the little I know of ADHD, I suspect it would be much the same. ADHD kids are full of restless energy, too much to dispel in a normal child’s life. Attempts to “discipline” them according to practises for normal kids, i.e. restrict their disruptive behaviour, I would imagine would just make things worse. These kids, like autistic kids, need to be managed (“disciplined”) according to what suits them, and that at times is quite different to what suits other kids.

Problems occur when you take these kids out into the public with other people who know nothing of your child, you, or your parenting needs. I’ve had looks from strangers that definitly say “why don’t you control that child!” My son will run about, talking to himself, he walks in the way of people, walks too close to them, touches people barely known to him, will not sit still in a cafe - general unsociable behaviour like that, and of course the temper tantrums in the middle of the shops. Nothing to what some autistic kids do and to what ADHD kids would do, but enough to make these strangers think I know nothing about parenting (even though my 14 year old daughter is perfect ). One particularly bad day I had someone tell me my son should be taken away from me, I was such a bad parent. At the time I would have been quite happy for them to have done so.

As for the medication issue. I have heard stories about how it seems to be more prevelant in the US. I wonder if this is so, or is it because the dioagnosing and treatment started there, and there are more people there, so there are more stories of it, or because Americans, being generally more outgoing people, are simply more likely to talk about it.

I think it’s very easy for others who have nothing to do with it to say “too much medication! you should simply discipline them better”. There is far more to parenting than “discipline”. Sure, there are people with bad parenting skills, and some of them may have a ADHD kid. And, as I indicated before, once you get a diagnosis for you child of some behavioural disorder, many people react in many different ways. The worst I think is those who refuse to recognise it and go on as if their child has no such disorder.

I have heard of people who have been very grateful for the medication they were able to have to control their ADHD. Before having it their attention was all over the place and they were acting like a stressed out mum, doing a hundred things at once and not being able to focus on any. With the medication they could calm down and concentrate on things. I imagine parenting a ADHD kid would be a great challenge, and much of what you would do would not “work”. It is a condition in them and no amount of ‘discipline’ will take it away, all you can do is manage the behaviour to suit the child and the degree of his disability. The same with autism, you manage them to help them function as much as they can and so they can fit into society as much as possible, but you can’t take the autism away.

The decision to medicate I imagine would be a hard one. It’s probablay not the best solution, but until something better comes along... After all, we use long term medication to control physical problems like asthma, and diabetes and blood pressure.

On the other hand, I have heard stories of kids who seem so drugged out that they just sit and watch TV. Those stories would support what Liz said she had heard about adults who have lived through this. There are similar reports for autism. There is no medication for autism but there is a behavioural program called ABA - which is meant to train autistic people to behave like ‘normal’ people. I’ve heard parents say it’s great, but I’ve heard of adult autistics who have been through it who have absolutely hated it. To me I feel its aim is to try and mould these people into being someone they are not. Change them through a Pavlovian type of conditioning into acting in a way foreign to their natural thinking. Not allow them to *be* autistic. (bit like those who try and change homosexuals into heterosexuals through behaviour. Behaving heterosexually doesn’t make you heterosexual, just makes you miserable).

But there are probabaly stories from adult autistics who liked ABA - I don’t know - since I rejected it as a therapy, then I haven’t pursued the matter.

There is no medication for autism, so I’m not faced with that dilemma. If I were told there was medication to take away my son’s autism, would I do it? I would be very tempted, for me yes, but mainly for him - so he could function better and live a more fulfilling life. Yes, I know I just said he should be allowed to *be* autistic. But the behavioural therapy doesn’t make him not autistic, just conditions him to behave in a socially acceptable way, to non-autistics, not to themselves. But if medication could genuinely take away the autism, that would be a different issue. If your child were blind, and you were told there were medication he could take which would allow him to see, but he would have to take it all his life, would you give it to him?

That’s all folks
Alex

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