This is going to sound at times like I'm getting off topic, but I'm not.
What really got me about that idiotic "he's no longer autistic" statement, was it was expressed in a way that wouldn't let me object. If I challenged it, then I was clearly trying to find something wrong with my child (which I had been publicly accused of by a local doctor who I found was badmouthing me around town) and if I let it pass then I legitimized it. Since I wouldn't win either way, I figured I would at least challenge it (my reputation was mud anyway, nothing left to lose).
It's acommon tactic in people who don't want to deal with unpleasant realities; deny them in such a way that makes YOU the ogre if you insist on rubbing the person's nose in it. For example, I live with physical disability. The actual mechanism of my health problems are difficult to understand and some doctors just can't be bothered. So when people ask me what's wrong, I tend to summarise quickly and move on ("It's a bit like MS but not progressing much"). But the occasional person who I realise is simply not interested in caring at any depth, will occasionally greet me with, "It's wonderful to see you looking so well!"
I might be feeling like something the cat dragged in, but I've just been told I LOOK wonderful, so clearly how I feel is totally unimportant and devalued. Any attempt to say I feel ghastly will therefore be taken as the equivalent to calling them liars and be obvious evidence that I'm a whingeing malingerer. So I grit my teeth and say something like, "Well, I'm glad I LOOK good. It's good to know..." and leave it at that. Unless I really do feel good as well, in which case I smile, acknowledge it and thank them.
Being told you look well is not the same as being told you look good. Being told you look well, when general knowledge is that you have a chronic condition which has pretty much wiped out any chance of a career, is similar to being told that you're relishing disability and probably making it all up.
Then there are the people (often professional support services and diagnosticians) who try to link my disability to the kids' Pervasive Developmental Disorder (PDD). They also link my physical disability to some imagined mental impairment. I've even had people talk slowly and loudly to me. When I meet these people professionally as people I have to consult with for my kids, I have a great deal of difficulty. Interestingly, I meet most of these people via Dept of Ed.
You have to develop a thick skin and also use any anger you feel to fuel your drive for justice for your kids. Smile, be polite, but do not take any of these sort of attitudes on board. If you are sufficiently close enough to the people expressing them, then tell them that it hurts and why. But be prepared to walk away from friendships where these attitudes seem to prevail; they are not healthy for you and will eventually drag you down and damage your own confidence.
When I became disabled, I lost some friends. I also found others. The same thing happens when you discover your child is not perfect after all. Some people will find it too challenging, but will eventually come back. Some may never come back. Those you lose permanently - well, the sooner you can move on into more valuable and sincere relationships, the better. But it hurts.
And when you find these attitudes in people you have to deal with professionally, try to handle it with class. Humour works well, it can defuse a great deal of potential hostility. But inside yourself, learn to detach and not take it personally. Instead, let your anger find a productive outlet and use it positively. Channel it into letters, summaries, phone calls, insistence on good diagnosis. Action. Calm, confident, effective. And follow-through.
You will win if you do this. You will achieve more than if you had sat back and not tried. Plus your children watch, and learn from your example. Your children learn that you are fightring for them because you value them and consider the battle worthewhile. They also learn the effective, appropriate battlnig techniques and as they move towards independence and adulthood, they begin to follow your example in other ways.
Win-win-win. On so many fronts.
So whenever you meet idiots who are trying to rewrite the diagnostic criteria but don't have the medical cred to do so, then remember this and use it. Becme a bigger expert than them (not difficult!) and remember - every battle you take on and win, makes you vastly stronger.
Marg
Yes, we can encourage him, offer support, help when needed and appropriate but it's still on him. Stooooopid. Get the advocate or at the very least, look up the special education laws in your state. If you have questions about that aspect, post in the Special Education forum and you should get some great ideas.
