(was (B) Bill, chores, and Will ...)

[Guest guest]

Hi ,

At 10:33 PM 10/9/2008, you wrote:

>You are self-dx-ed, but wrote, do not try this at home.

Yeah, I thought that might grab someone's attention. <smile!> Recall

though, I am dx'ing MYSELF .. and this is after long consideration.

When I initially learned about AS about thirteen years ago, at first

it was in the context of my late brother that I realized we probably

had AS in the family. My brother would not have just been a " mild "

case either. He was full blown - possibly high functioning autistic.

Of course, there was no name for what he had when he was alive. Two

psychiatrists I took my brother to back in 1977 came awfully damn

close though. It was their description that came to mind, twenty

years later, when I was reading about AS for the very first time.

They had told me that his symptoms seemed similar schizotypal

personality disorder. This was, in fact, a common label applied to AS

at that time. However, they said they did not believe he was likely

to develop schizophrenia.They went on to describe all the

characteristics that we know today are typical of many AS.

So, when I stumbled over information about AS twenty years later, it

was a " Eureka! " moment for me. It all fit. It brought me a lot of

peace and closure, knowing this about him. Then, I began to take a

long look at myself.

For the first three years after learning about AS, I considered

myself to be half-and-half, sort of straddling the line between AS

and NT. When I joined ASPIRES and another discussion group in 2000

and began talking to other adult AS, and reading first person

accounts of adult AS such as Lianne Holiday-Wiley, and more closely

examining my own developmental history (non verbal until the age of

4, etc.) I then pronounced myself to be AS, albeit one who had " come

a long way, Baby " since childhood.

In the part of the world where I live, however, you don't get a dx of

AS unless you are disabled by it. Seriously. Whether or not it's the

level of awareness that is there, or it's because thanks to our

socialized medicine and social security blanket, they fear that

dx'ing a more " mild " case could result in another person who would

demand services and a guaranteed income, I don't know. I never asked

for, never wanted, any special services. I can look after myself. I

just wanted closure.

I tried to get a dx when I first concluded I was AS, and was told

that " although you do display a strong autistic affect, you are too

social to have AS. " Alas this betrays the ignorance about AS in

general. Early " experts " on AS such as Tony Attwood (a well loved

authority on all things AS especially as it pertains to children) and

Bryna Siegel (who, unfortunately is reviled in the ASD community but

is often right on the money) have both said that many AS desire to be

social, but sometimes can't get it right. As for me, I looooooove

people, always have!

I hope that someday, in a more enlightened time and place, I'll get

that formal dx. But it's no longer that important to me. The most

important thing is knowledge. Keep reading, keep learning. Not just

about AS, but also finding those missing pieces of the puzzle, all

those early social learning lessons I missed, keep trying to

understand how the other half of the world thinks. <smile!>

> I still am tempted to " out " quite a few people who are

> mathematicians who to me- seem more than merely eccentric- one had

> sensory issues, for example. I am not an expert.

My advice to you for now is: don't do it. Unfortunately where it

comes to understanding and tolerance towards ANY neurological

difference, we are still dark ages when they hung black cats for

being possessed by daemons. Unless, of course you decide to go on the

lecture circuit as many some high profile AS and adult autistic folks

do. THEN you'll get a bit of cred - you'll be a curiosity.

My experience with disclosing my anxiety disorder and/or autistic

side has been more negative than positive. There are two types of

folks who are receptive and non-judgemental about my disclosure and

both types are very KNOWLEDGEABLE about neurological differences,

because they are health care providers (and not all of those are

enlightened either), or health care consumers - ie they have a mental

illness and understand first hand the challenges of being a

differently brained person in this world, and the stigma that goes

with it. Normally though, when I did disclose, I sensed a shift, that

I was no longer an equal, but looked upon as a child, someone who is

" less able. "

Bills speaks of AS being a " brain difference " and not a " disease " and

I do believe in the future that AS and other neurological variations

such as ADD will be recognized as such, and educational systems will

be geared to the talents and abilities of each child, and we will

know how to parent each child to their own abilities. Employers will

be very enlightened and will see AS as an asset to the company.

Of course, in order to accomplish this, PERCEPTIONS about ASDs need

to change, and that's kind of hard if the only ADS folks who make the

headlines are the " freak shows " like Darius McCollum, the

40-something psycho who has this thing about stealing subway trains -

and a mother in denial who keeps saying in effect, " he's

misunderstood; why don't they give him in the transit system so he

wouldn't break the law. " How dumb is that? That would be like putting

a petty thief in charge of a charity. THAT is the type of public

perception we don't need!

We need MORE Lars Penner, MORE Meyer, MORE Dawn Prince-.

And how about us ordinary folk " coming out? " Well, it depends. It's

easier when you aren't putting your job, or primary custody of our

children, on the line ... because of a opportunistic co-worker, or

vindictive ex spouse who seeks to pathologize our condition to gain

the upper hand. We have a loooooong way to go......

- Helen