Article on late diagnosis of adults with AS

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whirlingmind
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03 Mar 2013, 9:46 am

http://www.iancommunity.org/cs/articles ... r_syndrome


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LabPet
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03 Mar 2013, 10:47 am

Thanks for the link. I wonder if AS is now being over Dx'd in many adults.....with all respects, I do think that AS has become a catch-phrase, even trendy, amongst some self-diagnosed adults who maybe did not experience signs/symptoms as children. I am skeptical of certain adults who may be experiencing, say, relationship or adjust difficulties (which are pretty much normal for anybody!) and then suddenly AS dawns on them, which becomes a handy alternate explanation. (Certainly there are exceptions, and I am sorry for those adults who truly suffered with being badly misunderstood as children). Maybe diagnostics, especially for adults, needs to be more stringent. The diagnostic waters have become cloudy indeed.


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whirlingmind
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03 Mar 2013, 11:19 am

That's not a response I was expecting!

The article is basically saying how difficult that missed generation of adults with AS which went unrecognised, have had it.


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Robdemanc
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03 Mar 2013, 11:34 am

LabPet wrote:
Thanks for the link. I wonder if AS is now being over Dx'd in many adults.....with all respects, I do think that AS has become a catch-phrase, even trendy, amongst some self-diagnosed adults who maybe did not experience signs/symptoms as children. I am skeptical of certain adults who may be experiencing, say, relationship or adjust difficulties (which are pretty much normal for anybody!) and then suddenly AS dawns on them, which becomes a handy alternate explanation. (Certainly there are exceptions, and I am sorry for those adults who truly suffered with being badly misunderstood as children). Maybe diagnostics, especially for adults, needs to be more stringent. The diagnostic waters have become cloudy indeed.


I think an adult would have to be jumping to conclusions if they read about AS and assumed they had it simply because a relationship broke down for them.

I am 40+ and first came to know about AS 3 years ago after going to a specialist due to exhaustion. After reading a lot about AS I found it explained my whole life and did not see it only as a convenient reason for a specific problem I had at the time.

The problem my generation face is not whether we may mistakenly diagnosis ourselves (who could be so stupid?), but it is the idea that we must convince others that we have AS before any help may be accessible. And it is not our fault the medical world failed to recognize AS when we were children.

I don't think the problem is over diagnosis in adults, because as adults we would be lucky to be even considered for an assessment in the UK. The problem is that most of our generation still don't know what AS is.



Thelibrarian
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03 Mar 2013, 11:36 am

I'm fifty and am one of those adults referred to in the article. In fact, I was in my early thirties before AS was included in the DSM in 1994.

As a result, I spent most of my life being told, and believing to some point, that I am uniquely weird, defective, and I need to get my act together. What I went through is not something I would wish on anybody. On the other hand, as a big-time loner, I am fully self-supporting and can live pretty much how I want without being accountable to anyone. Nor do I have the insufferable entitlement mentality that has been taught to so many young aspies I see in here. So, despite what I had to go through, today I'm glad I did.

What irritates me more now than what occurred in the past is how almost everything having to do with autism or AS has to do with kids. I get the feeling that those writing on AS think that when aspies hit eighteen, they either become normal or disappear.



Robdemanc
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03 Mar 2013, 11:39 am

whirlingmind wrote:
That's not a response I was expecting!

The article is basically saying how difficult that missed generation of adults with AS which went unrecognised, have had it.


It was refreshing to read the article and I feel I am in the group the article is discussing. It was written in 2007 and unfortunately I still think in the UK were have not progressed. The NHS don't appear equipped to deal with AS in adults, and as far as I can gather there is little or no understanding of it amongst GP's.

I will return to the link you provided and try to learn more about the charity involved.

Thanks



dyingofpoetry
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03 Mar 2013, 1:47 pm

LabPet wrote:
Thanks for the link. I wonder if AS is now being over Dx'd in many adults.....with all respects, I do think that AS has become a catch-phrase, even trendy, amongst some self-diagnosed adults who maybe did not experience signs/symptoms as children. I am skeptical of certain adults who may be experiencing, say, relationship or adjust difficulties (which are pretty much normal for anybody!) and then suddenly AS dawns on them, which becomes a handy alternate explanation. (Certainly there are exceptions, and I am sorry for those adults who truly suffered with being badly misunderstood as children). Maybe diagnostics, especially for adults, needs to be more stringent. The diagnostic waters have become cloudy indeed.


The problem with all that is that some adults, especially those over, say 40, don't have thorough or complete childhood records regarding their deficits, assessments, social observations, etc. Relying on memory just doesn't cut it if we are making diagnostics more stringent, even when memories can be helpful, and they are often not as people with ASD tend to have difficulty looking at their experiences objectively. Many adults have fallen through the cracks, as Asperger syndrome was not added to rthe DSM until 1994... so it may be worth looking at more adults instead of fewer.

P.S. I wrote all this from personal experience.


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bethmc
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03 Mar 2013, 1:55 pm

When Uta Frith published the book "Asperger Syndrome" in 1991, I was 23 years old.
It still had no effect in my life because AS was an unknown entity in the larger world.

It was almost 20 year later when I finally sought answers, based on my belief that yes, I did indeed have AS - and I was right.

It's strange to have a new identity thrust upon you, especially when you thought you had figured yourself out. I welcome the identity of AS into my life - it's helped me to understand A LOT of my previous patterns of behavior and it's also helped me to not give a fig about what people think - although I was already doing that before my diagnosis.

I really believe it's the larger world that is the problem: the general population's so intolerant of quirks and strangeness that I am driven to seek out the strange people among us, and definitely not the "normal" ones.

When I was a kid, all I wanted was to be normal - to fit in.

I'm so glad I never got that wish. :D



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03 Mar 2013, 2:28 pm

I am in my mid 50s and first learned about Asperger's when I was in my mid 40s. All my life I have had these problems, so no, I am not using it as an excuse for a current problems. I have always had these traits, and had to deal with the problems this condition causes, even though I didn't know just what was wrong with me until about 10 years ago. Finally finding out what is wrong with me helped reduce the frustration and stress caused by not knowing why I am the way I am.



mikassyna
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03 Mar 2013, 3:50 pm

Being AS is not an elitist club that people go to feel trendy. Last I heard, having impairments is not an aspiration for many intelligent people. I tend to think that people seek diagnosis at a late stage because they each have a need to figure out the fragmented pieces of a confusing puzzle that has been their life.



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03 Mar 2013, 4:22 pm

Well, I'm not diagnosed with AS, but I do think that it's not about whether it's an elitist group or not. I know for certain that some people with high IQs and subthreshold ASDs like to think of it as such, like it or not. The question is, if a late diagnosis can help, at least by explaining many traits of self, it is OK in my opinion. At least now we can have a valid explanation of what have caused our struggles, even if there's no real help, that must have had come much earlier anyway to have a significant effect upon our life. (In other words, it's already too late, but why not, if it makes you feel better.)


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04 Mar 2013, 12:20 am

I have to admit as a semi-diagnosed Aspie it's eating me up that I don't have 100% closure on something I know for sure and probably never will because the only expert I can find refuses to diagnose without a parental interview that will not happen. It still frustrates me that nobody could see what is so blatantly obvious I would have to be crazy to deny. I was literally a 100% textbook case of Aspergers (or HFA if you prefer) as a child there's no way any 'expert' should have missed it because I met ALL the criteria and had ALL the quirks and stereotypes right down to refusing to eat foods that touched each other no matter how hungry I got.

My mother recently admitted she always knew I had "VERY mild Aspergers" so I wonder if she just refused to pursue it further to protect me from thinking I was diseased, just as she refused to tell me doctors seriously thought I might have childhood leukemia. She doesn't realize that not knowing what I had as a teen almost drove me to suicide because I could not understand why such a sweet, caring boy who tried to help everyone could be both well liked by adults yet be treated like the black sheep by relatives and downright hated by most classmates. Many classmates even told me to my face privately how they hated me more than anyone in the world when I never even spoke to these people one on one at all!



MissMoneypenny
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04 Mar 2013, 8:49 am

Thanks for posting this article. Interesting site generally.

Parental involvement - for gawd's sake. What do they do when the person has no living relatives? Or if the parents are so opposed to the idea that their offspring could be on the spectrum that they won't co-operate - even though the person displayed all the signs as a child?

Maybe those doctors and health authorities who are opposed to, or won't help facilitate, adult diagnosis and support think that we've sat on the dole or flipped burgers all our lives, so just carry on. Where is the support to get us into more appropriate work?



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04 Mar 2013, 9:05 am

I was diagnosed 2 years ago age 49. Haven't told my mum yet. She's 79, not sure what she'd make of it.

I had to go through the process just to settle the question. Couldn't go on being 'self-diagnosed'. One could question what use it would be at this age. After all, my life is ruined already...although I've actually been lucky in later life.

But what a difference it would have made 20-30 years ago. Not being able to 'fit-in' made me feel that nothing was open to me, that I suffered from a deep moral failing, that I don't deserve to succeed in any area - social, academic, or professional. That I had let people down, thrown away opportunities.

What a weight off my shoulders it's been to realise that I was battling something that those around me never had to deal with. It's a long process and hard to do when you're set in your ways, but I'm slowly reinventing myself towards being the person I could have been had I always known what I was dealing with.



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04 Mar 2013, 9:33 am

MissMoneypenny wrote:
Parental involvement - for gawd's sake. What do they do when the person has no living relatives? Or if the parents are so opposed to the idea that their offspring could be on the spectrum that they won't co-operate - even though the person displayed all the signs as a child?

My mother is only now coming out of denial and even admits dad has autistic traits (he's a stereotypical computer geek) but she would NEVER accept that I'm autistic because her ego wouldn't be able to take the idea she was a 'failed' mother. Trust me anytime I mention Aspergers she gets irate and warns me not to tell anyone and constantly downplays how "minor" my Aspergers is. I mention I felt it was not worth diagnosing and she practically jumped for joy so I know that I'm going to be wasting my time having her interviewed. As for other relatives, nobody else knew me enough as a child including my father so it's her or nobody and I already know what side I'm going to (not) pick.

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Maybe those doctors and health authorities who are opposed to, or won't help facilitate, adult diagnosis and support think that we've sat on the dole or flipped burgers all our lives, so just carry on. Where is the support to get us into more appropriate work?

Well, according to decision makers as long as we work at all we are "employed" and are not a statistic. Long story but I had this battle with the Canadian social service system years ago. That's why I was so angry with the psychiatrist. He said since I work I'm not 'significantly impaired" for a diagnosis though I'm VASTLY underemployed and am told all the time it's unreal how someone with my intelligence is doing such a basic job.