17 Feb 2006

How to be superhuman

There’s an autism charity in NI. I haven’t had many dealings with it; I did talk to a member on the phone when we moved here and I was going to attend a group meeting one evening, but I couldn’t get away and I’ve not pursued it again. But a few days ago I got a leaflet back from Duncan’s school about a course the charity is organising for the parents of autistic children (or children with autism; mustn’t forget to use person first language ;-) ). The course is designed to help parents understand autism and their children better and give more information on the practical support available. I considered applying to take part, especially to find out more about services I could make use of in this area. But I think I would probably sit through most of it squirming in my seat as I was forced to listen to obvious, boring or irrelevant information. I also have a low tolerance for those people who like to whine and ask loads of stupid questions, you know the kind of people who always talk the most at antenatal classes.
Then I was thinking, what services could I possibly use anyway? How could outside agencies benefit my family? The answer is, I don’t think they could. I don’t think the risk would be worth any potential benefits. I don’t want to have our names written on any more files. Since we moved here I have had just 1 paediatrician visit with Duncan, initiated by us, and he has seen the educational psychologist a few times at school. One of the things I used to hate was all the visits to paediatricians and dieticians that we used to make when we lived in London.
I watched an episode of ‘Without a Trace’ late last year in which a young boy with autism went missing for a while. In the program, the parent characters tells the story of how they went to some autism support meeting at which all the couples were informed that 80% of them would divorce ‘cause autism is so bad and it rips families apart’ and all that. I remember reading that sot of stuff when Duncan was 1st diagnosed too and feeling a bit freaked out. I mean, we’d need to be superhuman to hold out against that kind of statistic! (It’s probably not true anyway.)
But I think that these statistics could actually influence you in a negative manner. If you’re having problems you might feel more likely to ‘blame it on the autism’ and admit defeat, because after all, ‘nearly every couple with an autistic child, split up’. My child’s autism does limit our family in some ways but there are so many things that are much more awful than having an extraordinary child. Everyone faces difficulties in their lives, whether with money, illness, gambling or drug use or even awkward in-laws. It has helped me to accept things the way they are, to enjoy my child and laugh at some of his funny ways. If I was constantly saying poor me look at all the things our family can’t do, then I’d be feeling totally depressed. I am so very far from being a saint and sometimes I do just need to get away from them all, but that’s what Gordon’s here for!


elderfairy said...

Gotta make a comment. Have the same problem with the educational psychologists and Willow..they just love to be on our f’ing case (scuze my french), pushing us closer and closer to seeing ourselves as a family living with the diagnosis. Willow is who he is. It’s not a ‘problem’ to us. We are not going to let Willow be diagnosed with anything (even though it’s tantamount to’child abuse’ here if you don’t put your kid in the relevant ‘pocket’). We’re supposed to put him into the system to recieve a label, but we don’t want to, cannot see how it will benefit us. And anyway, they’ve given him the labels anyway. We’ve been told he’s gonna ‘get’ ad/hd or aspergers syndrome. Fine. Whatever. But what comes with it? We’ve also been told that most families with ad/hd type kids fall apart, that we’ll be lucky if our marriage survives. Jeez - like we need extra crap. I sympathise, me darlin’. You just hang in there and keep them at bay. Sounds like you know your son and he knows you. Now all you have to do is navigate all these misguided professionals. Excuse my openess, but it does make my blood boil.

Carol said...

I saw that episode too. I have three Children all on the Autistic Spectrum, all diagnosed. I just wanted to write and say I know how you feel. Being “interfered with” by health professionals is so awful.
I initiated the diagnostic process, for my benefit so i knew how to help them best, BUT now I want shot of the “help” and it wont go away. Anyway, thats my trauma not yours, just wanted to say I’m thinking of you.

Sharon said...

One of Duncan’s teachers told me he was behaving as though he had adhd. All he needed at that time was a chance to run around a bit more. Knowing he is autistic has been helpful because I knew where to turn for help (the writings of autistic adults and a few professional types). I don’t think he has adhd and don’t care. That label won’t help me understand him any more and that’s all that matters.

elderfairy said...

I hope I din’t say anything untoward about diagnosis. There is nothing wrong with diagnosis per se, it’s just that as far as Willow is concerned it won’t help a jot. When I was a kid I had definite ad/hd symptoms, but was also gifted (for a brief period before school teachers pushed me too far). I reckon that if I had of been diagnosed with something like ad/hd (and obviously, not medicated) then I could have recieved a lot more understanding at school and therefore been able to complete my studies. If I had of been diagnosed with ad/hd and carried that into adulthood I would not be ashamed or hindered by it. It’s just the whole medication thingy and the way it goes hand in hand with the diagnosis that bugs me.

Sharon said...

You’ve said nothing wrong at all!
I agree with you, having a diagnosis only helps if it lets the diagnosed person or their parents, have more insight and understanding. The pressure to medicate people is very wrong.

amanda said...

Hi, one of my boys has A.S, he saw an ed.psych at nursery, he has’nt been ‘officially’ diagnosed just because we (& the Ed. psych) felt it would cause problems with H.E. I’m glad we know what it is, now we understand. But sometimes ‘help’ isnt always helpful - just my opinion.

carol said...

You’ve said nothing wrong at all. I agree that labels arent always helpful and medication less so. I was a “difficult child” -adhd/AS type thing and due to lack of understanding etc I left school at 14 , never completing my studies. Would a diagnosis of helped? - who knows