Aspies For Freedom

May I put in my tuppence worth?

It is well known by most here that the collection of traits we share was first described by Hans Asperger during WWII and his clinic was destroyed in the bombing. It took a further 40-odd years (VERY odd years, some of them, e.g. the 'Seventies! ) before the notes were translated by Lorna Wing and a further ten or so before they were written up in DSMIV. With me so far? In other words, a 'diagnosis of Asperger's Syndrome' is a very recent (say, last 15 years) approach to us. Even some of my children are too old to have been diagnosed whilst still at school!

However, people with our brain-wiring have been around forever. We self-diagnosed or our families diagnosed us as 'shy', 'hermits', a bit 'peculiar' etc.

And don't put too much faith in professional diagnosis - as many here have said it is a bit of a lottery. Good grief, I have several other conditions which were very easy to diagnose once the doctors did the right tests, but their prejudices excluded me from those very tests for DECADES. What joy would I have had getting a diagnosis of AS?

If you are female, forget it.

"Doctor, I believe I have a duck'

'Why do you say that?'

"Well, it looks like a duck, walks like a duck, quacks like a duck...."

'Ah, common mistake you ladies make - it's a chicken. Women don't get ducks.'

I actually saw a doctor have an amazing "aha" moment when I was talking to him.

'How long have you had Atrial Fibrillation?'

"Since my teens."

'Gosh, that's young. Women don't usually get diagnosed with that until they are much older.'

"I was diagnosed a couple of months ago"

Doctor's face looks puzzled, then realises what I've said (I'm 49) and suddenly twigs - women don't suddenly get disorders at the time of diagnosis! (Well, duh as my kids might say!)

Boy, do we need that sadly non-existent 'edit button'!

I agree that people have been known to fake back disorders (which was probably why it took so long for my severe arthritis to be diagnosed ) but an ASD? When there is SO much prejudice around? I somehow doubt it. Most people have never even HEARD of Asperger's until someone they know is diagnosed.

Given the attitude amongst a large segment of the population why would anyone want to risk being labelled '***' by their mates just to say

Sorry, Batman.

I really wasn't directing my post at you - that is why I left your name off the quote as it was a quote, I thought, from a previous post that I could not immediately find. I just thought that it was succinct, and in understandable vernacular for all the age groups here.

I happen to agree that sometimes it is tempting to look back at our struggles through life to fit in and decide in our heads that we now have an excuse to give up.

But, as I said to my son, a diagnosis means that we know WHY we struggle - and we still HAVE to struggle - BUT IT IS NO LONGER OUR FAULT.

I suffered a lot of mental anguish over my bouts of extreme tiredness; I wondered if others were correct in their assumptions that I was just very lazy until I was diagnosed with serious cardiovascular disorders. Now I still don't like having to retire to bed for days on end but at least I'm no longer beating myself up over it because I now get understanding instead of censure.

(1)I think that it would depend on the wording of the question. If it said 'medical condition' you could legitimately answer "No".

(2)I cannot get travel insurance at the moment because I was diagnosed with two heart conditions in June this year. I had to have an angiogram, so I am excluded from heart-related claims (the only kind I'm likely to make ) for a year. I wouldn't mind if I were at home, but I'm on the wrong side of the planet, and the thought of risking spending a few very expensive nights in a Singapore hospital is keeping me here....

I don't think that insurance would be a problem as far as Asperger's is concerned, but I would be worried about it being a factor in employment.

Hi matthe!

WELCOME!

I know what you mean about the "really great warm feeling inside"; I get that too! It is like coming home...

Self-discovered (with assistance) Aspie grandmother.

Oh, nobody minds welcomes peppering a thread!

But, at your request we'll get back on topic.

Self diagnosis, or discovery, or epiphany should not be regarded as second best to formal diagnosis.

Those who have read about Asperger's syndrome and recognised themselves in what they have read will generally go on to do at least as much research into it as any psychologist other than an ASD specialist. The latter are rare, busy and often expensive. Having done the research and finding that we 'fit' into Aspie society in ways that we never 'fit' into wider society is as much confirmation as most of us need or desire.

Only if there are serious issues do I believe that making the label official is necessary. As others have said, official dx is the only way to access many support systems. For those of us that do not need such support systems it is a moot point whether we 'need' to pay out large wads of cash so that someone can tell us what we already know.

Excuse me coming somewhat late to this but I'm still waiting for the vital piece of paper! I quoted this bit above since it relates very much to my own experience. My employer tried to use the fact that I was at the time self-diagnosed to argue that I did not have AS - they even produced a report from what I now regard as a "fake" psychologist to say this - and that I was using this to excuse laziness and other shortcomings. This went on from the time I first self diagnosed myself in late 2005 to just last month! (November 2007). Being able to verbally quote the "real" psychologist who said I am definitely on the spectrum has made a world of difference to their attitude.

From a practical point of view, those with a self-dx will almost definitely find that in a medical scenario doctors/consultants will largely ignore a self-dx.

We found this problem when my dad was in and out of hospital with dementia...he/we had realised he had AS when my DS was diagnosed years ago. But when we tried to tell the staff about his AS and how it affected him, we were asked where he was diagnosed, and when we explained it was a self-dx, it was ignored. This was actually very important, as he was doing things that were part of his AS, not his dementia, but we weren't listened to at all.

Ironically, he was later identified as having 'mild autism' during the various mental health assessments he underwent due to his dementia!

My DS has a formal dx, and I was diagnosed at CLASS last summer. I also think that having a formal dx has helped me at work, as I have had a lot of support from my line managers and colleagues. I wouldn't have felt comfortable telling them I had a self-dx, as I wouldn't have felt that it would have been taken seriously.

B

No, sadly he did have vascular dementia caused by one massive stroke followed by a series of smaller ones over the course of about 5 years or so

Glad you got your dx!

For me, I needed the affirmation of an official dx. Before my dx, I felt very much as though people saw a self-dx as attention-seeking, being neurotic, etc. Not that I did self-dx, my DS' paed. recommended I go for an assessment, but even telling people this while I was waiting for my referral, etc, got the 'disbelieving' attitude...

Even with an official dx, one of my bros still thinks all of the above!!

B

Mind you, when I first posted here, I was basically accused of lying by one member for saying my DS and my dad had a dx, and that I had been referred, oh also that my bestfriend had a dx.

All of which is true, BTW

So you can't win, really!

(I think when you have a child with a dx, your life becomes one of additional needs, IYSWIM. I know more people with a dx, or kids with a dx, than NT people, because my DS went to a residesi special school, I helped run a parent support forum, and I work in additional needs. Plus my DS is an a young adult now, so that's a long time in this alternative world!  

I think it must be different/harder if you are an adult on your own who has a dx or feels they might have AS.)

To be honest, some people with a self-dx can seem quite aggressive about it?? (I'm not meaning you, Batman, just other things I've read on here).

For me, before I got my formal dx, I said things along the lines of 'I think I might have AS' or I explained that I'd been referred for an assessment. I didn't feel comfortable saying 'I have AS' before my dx was professionally confirmed, bnut obviously that's a personal thing.

I hope I don't get flamed for saying this I do know how hard it can be to get a dx as an adult, and have had my fair share of horrific experiences at the hands of my local, general mental health team before I was referred to CLASS.

B

It's difficult, because on the one hand I'm not ashamed of being autistic, but on the other hand I don't want to go around shouting it from the rooftops, because I feel it should just be something that is accepted with as little fuss as the colour of my eyes or the fact I'm female, IYSWIM.

Don't know if that makes any sense...probably a bit idealistic!

B

But there are actually quite a lot of different conditions that have elements that can present, or seem to present, like AS.

I am probably being too pedantic, but I don't see how someone can say 'I have AS', if they haven't been diagnosed??

Before my dx, I used to say that I thought I might have AS.

And sadly, as far as the medical world, education or SS are concerned, a self-dx will be treated as no dx

I agree, it isn't even possible to speculate.  But I would suggest that I don't think your brain would be any stronger.  I think the reason the OT would like our son to develop his physical skills is simply because having solid physical skills makes life easier.  Being able to enjoy some sort of physical activity has health benefits, and social benefits.  As some one who struggles to stay physically fit (I currently am not), I can see the difference enjoying something physical makes.  You have more energy, and there is a broader range of things to do.  But to achieve that at a cost of high stress, or problems with a condition like asthma?  That would not be worth it.  When might be gained always has to be balanced against what might be lost.

Without wanting to get flamed or anything, can I just clarify that certainly in the UK, the majority of adult dx requires input from other people in just the same way.

I am 42, but my mother (and my DH) were an intrinsic part of my dx process.

I was diagnosed at Cambridge, at Simon Baron Cohen's clinic, and someone who knew me as a child (in my case, my mum) had to be involved from the very beginning of the process, and she had to attend my final clinic appointment, which resulted in my dx.

At Cambridge, it is a diagnostic process, not just one assessment appointment.

B