Thursday, May 28, 2009

No help from the A Team

After many years of trying to persuade the relevant people to please consider the evidence we were putting before them in terms of his behaviours and obvious anxieties, we've finally got a diagnosis of autism/Asperger's for Buster. He's nearly twenty!

What does this mean for him? Well, very little now. He's living in a small home which is probably as good as any institution's going to be. Probably nothing will change there because the behaviours which have now been given a name were already there and are for the most part (I think/hope!) responded to appropriately.

But how much help might've been available in his early years? The local authority has a dedicated ASD team - maybe they all do.

How lovely to have been able to ask for advice on different issues.

How great to have been able to join a support group.

How wonderful to have been able to use a name for Buster's condition rather than people around thinking he was just miscellaneously strange.

How great it would've been to be able to explain better to Sweetie the reasons for his rages, the fact that he couldn't control his responses, the way his mind might be working. How different might their relationship have been?

Sounds like I think life would've been hunkydory if we'd only known! Not really tho' - life's not easy with any child with disabilities, and many with autism are farther along the spectrum than Buster. But with a bit more knowledge and support we could've done a better job so this morning I just felt like indulging in a few 'if only's.


Casdok said...

Congratulations on getting a diagnosis. But so sorry for you both that it has taken so long. I cant imagine how you must be feeling.
Am glad though to hear that Buster is getting the support he needs and is hopefully happy.

Maddie Moon said...

It's shocking really that it's taken so long, especially when you've been raising the possibility all this time. Only natural, I would have thought, to be indulging in a few what ifs.

I'm really glad you've got a diagnosis at last.

Karen said...

One of my sons is borderline various conditions (Asperger's being one of them) but not so severely that he's ever been diagnosed, therefore we've had no help at all over the years, and he's almost 18 now.

I hope you get the support you all need now :o)

Honeysuckle said...

Thanks, Casdok and Maddie. I think Buster's other disabilities masked the autism. (On the other hand, if we could see it, why couldn't they!!)

Hi Karen - I think that's the hardest situation, when someone's affected but 'not badly enough'. It's so hard to get anyone to take you seriously. A lot of the students I come across are in a similar situation but they haven't benefitted either from a steady home life. It's so sad.

Penny said...

I understand a little how you must feel! I'm glad you have a diagnosis in place now - and the support. I think you're entitled to a few 'if onlys'. On the positive side, your experience of it all may be useful to others...

Honeysuckle said...

Thanks, Penny.