Tuesday, April 5, 2011

ASD - So, You're an Expert, Are You?

This is not the post I am meant to be working on, nooooo. There are two posts I was supposed to be focusing on today: one for my first born's yucky birth story for Tork's award comp - which I will add I came runner-up in with the first award presentation; the second actually for the usurper winner of said award: Romina over at Martyrhood. Cause she is havin' a ba-aby. And a breakdown. And needs someone to curse and blaspheme and shake stuff up a little whilst she enjoys a teeny pause in blogging.

But I'm not. Why? Well because I am an avid reader of other blogs and a lot of times my ideas and inspiration strike from a thought provoking post by one of them. Today it was this one. Heartbreaking, especially to one mother of a child on the spectrum to another.

See, I have this great fear. It may well be an unrealised concern, but it is something that keeps me awake at night. You see, my oldest son has Asperger Syndrome. He is thirteen. And in my eyes he is something of a legend. If you are a regular here you will know what a big heart and amazing depth my oldest has. He inspires most who get to know him, he makes my heart fill with pride. He is generous, loving, articulate, confident, happy, intelligent... just all round amazing really.

To think that someone who does not know him may well take one look at his diagnosis or label and presume to be able to categorise and judge him scares me senseless. And people do. So-called experts do. Other children do. And with their judgements come assumptions, and interferring and demoralising. My fear is that some ignorant person will undermine all the positiveness we have encouraged, pushed and persistently re-inforced in my child. The pack mentality people - "seen one, seen 'em all."

You know what? EVERY ONE OF THESE KIDS ARE INDIVIDUALS. They can no more be boxed or grouped or even taught or dealt with the same way than ANY OTHER CHILD. They are unique - every single one of them.

Do not assume because you read or train or know Joe Blow's second cousin down the road who may be ASD, or was it ADD... DO NOT DARE TO PRESUME YOU KNOW EVERY KID WITH AN ASD DIAGNOSIS. Because you do not. I do not. What works for my child could well not be the way for another, in fact it may be the worst thing for another. All I can do is tell you about my son, how he is, what helps him, and maybe, just maybe you can take some of it and see if it works for another. Same as I listen and learn and take from others what I think will work for my child. But there is also a lot I disregard because it will not.

All I can say to you all is to follow your gut. Whatever your mother/father/sibling instinct tells you to do - go with it.

We did. Or more to the point, I did and the rest just trusted me. I fought against specialists, educators, other parents, you name them, I probably pissed them off.

And it worked. It helped him - MY CHILD - and in some small way contributed to the glorious young man in our lives today.

Seriously - who else will know these amazing kids as well as their own families, eh?

Off soapbox.

Oh, and I'll give the last word to my glorious child.

Four years old and seriously aware of how others treated him he had a dream, a bad dream, a nightmare: "Mum, I was in this box and I didn't fit but the teacher kept pushing me in and closing the top. But I didn't fit!"


Tara @ Our Whirlwind Adventures said...

Beautiful post.
It's horrible that you have to say it, because it's so darn obvious that each child is different, but you said it well x

LikeaDumptruck! said...

oh absolutely! It really bothers me when our kids are all lumped together. Okay, I get that they do have all those similar ASD characteristics that all relate to diagnostic criteria, blah blah. But the assumption that this itself makes the child and that's why they can be lumped together really ticks me off.

I've recently corresponded with a psychology PhD student who has a special needs child (why she got in to this field) and she said in the psychiatry and psychology fields they are the worst when it comes to understanding ASD kids :(

Thanks for linking to me!

E. said...

Well said!

Leanne said...

This is a great post, and your son's dream sums it up so well it seems. I kinda think labels disable our kids ... shove them in boxes they don't fit ... I mean, we need labels at times to summarise a situation or issue, but at the same time the labels can take away from a child's limitless abilities ...

MaidInAustralia said...

Well said. And wow about the dream!

Kakka said...

Boxes, yep everyone puts everyone into boxes - I'm overweight - why because I eat too much - wrong. You have ASD - well we know all about you - wrong.

Never, ever get off your soapbox about this one.

Torkona said...

Yucky birth story? :-) argh, yur scaring us :-)

i am so glad though that your are an avid blog reader and that other folks inspire you. its great :-) lovin it hehehe

- tork