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Should individuals with Aspergers be diagnosed at all?

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gippyden
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31 Aug 2009, 1:41 am

fiddlerpianist wrote:
gippyden wrote:
I am 52 and have been diagnosed for a little over a year. I have a son with high functing autism and a daughter with aspergers. The diagnosis helped my son because he was able to access early intervention and has made an enormous difference to his development.
My daughter was not diagnosed until teens and it has helped her mother and I understand some of the behavoural eccentricities that she displays.

I always felt like a square peg in a round hole and even though have achieved post grad qualifications it has been a difficult road at times. Having a diagnosis, for me, was to answer gnawing suspicions that I might have it but not trusting my own judgement of my own thoughts and behaviour as objective. The diagnosis meant that there was a reason I thought and acted as I do.

If someone has that nagging suspicion that they may have aspergers or something on the autism spectrum then seek out a reliable professional and take the tests to answer your questions.

Also I am happy to discuss my situation with any one who may want more information.

So here is a question. Suppose you have known you are different your entire life and you have had a nagging suspicion of AS, but when you seek out a professional diagnosis they tell you that you definitely do not have it. Then what?


This is a very good question and it is one thing that prevented me from seeking a diagnosis a lot earlier. I was worried about what would happen if I did not have Aspergers ..... then what. In the end I resolved to do exactly as you have described ..... to find out if I did or did not have Aspergers to at least cross this off the list. Then I would persue my situation elsewhere to resolve my question .... why do I feel different to others around me. I think this is a one step at a time journey .... or else trying to make the whole journey all at once is just too much for most minds to cope with



AuntyCC
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31 Aug 2009, 11:45 am

fiddlerpianist wrote:
So here is a question. Suppose you have known you are different your entire life and you have had a nagging suspicion of AS, but when you seek out a professional diagnosis they tell you that you definitely do not have it. Then what?


I'm trying to envisage the situation. If you get as far as being referred to a specialist whose opinion you trust then surely they would offer an alternative diagnosis. Have you got any doubts about your self-diagnosis then? Or do you think you are a "recovered" autistic, if I can put it like that?



fiddlerpianist
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31 Aug 2009, 12:06 pm

AuntyCC wrote:
fiddlerpianist wrote:
So here is a question. Suppose you have known you are different your entire life and you have had a nagging suspicion of AS, but when you seek out a professional diagnosis they tell you that you definitely do not have it. Then what?

I'm trying to envisage the situation. If you get as far as being referred to a specialist whose opinion you trust then surely they would offer an alternative diagnosis.

Or they could simply say, "Well, you have some of the traits, but it doesn't appear to be affecting the quality of your daily life." Am I just imagining a situation like this?

There were times in my life when it certainly was, but how much of that was simply learning how to grow up? I was bullied, but so were a lot of people. I was bad at sports and was clumsy, but I learned to excel in things I was good at. I had some minor sensory issues, but those disappeared in adolescence. I had trouble making friends my own age, so I made friends with people who weren't my own age. In short, I know that I was different, but I don't know that I was that different.

AuntyCC wrote:
Have you got any doubts about your self-diagnosis then?

All the time. In fact, I wouldn't even call it a self-diagnosis. The traits are unquestionably there, I think. The level of impairment, however, is what I often wonder about.


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JohnnyD
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01 Sep 2009, 9:31 am

Over the last few weeks it's dawned on me (finally - I'm 41) that I have Asperger's. I'm still coming to terms with it and in some ways it's quite shocking but mostly it's a tremendous relief. Finally I've found an explanation for everything that's been wrong with my life for all of my life.

I'm not sure about getting a professional diagnosis. One the one hand it would allow me to say to people - "look, this is what the problem has been all along" and that would be important to me because I've always felt that people won't believe me or take me seriously. It could open the door to me being able to rebuild my life along lines which wouldn't cause the kind of anxiety and depression I've suffered from since I was a teenager - I could finally start to live. On the other hand it could stigmatise me, particularly at work where I already have a reputation for being "difficult". Without the understanding of the rest of my team I could easily be forced out. I also want to tell all my friends but I've got no idea how they'll respond.

I'm gay and when I finally came out (you can imagine what it's like trying to come to terms with that when you've got Asperger's - total nightmare!) in many ways it created as many problems as it solved. This feels different, this feels like the "homecoming" that coming out as gay never was. I've never regretted coming out, however problematical, could coming out as Aspie be equally necessary?

Jx



Ralou
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01 Sep 2009, 10:21 am

I knew I had it before I went to grad school (unless, of course, at least two psychiatrists tell me I don't have it in the near future, in which case, I guess I'll take their word for it, then camp on their couches until they tell me what I do have). Anyway, I told my roomies and two study buddies I had it, but never got diagnosed.

Stupid of me. I should have gotten the diagnosis and any help that would have come with it. For me, I might as well have been driving with crappy brakes and not bothering to worry about it because it wasn't raining and I didn't think I'd have to stop suddenly. I realize now, the time to get the diagnosis is not after or during a crisis I can't cope with.

That said, telling my (grad student psych major) roomie and her stoner buddy I have this actually caused me great harm in the end and contributed to my leaving grad school. One day, after I'd been particularly withdrawn and cranky, this little snot and stoner boy decide to hold a conversation in front of me, allegedly about stoner boy's autistic sister, but really a laundry list of all my bad qualities. So I don't expect a diagnosis to make people magically kinder. People are people. And well, that's about the worst thing you can say about anyone, really. I do hope that little snot finds herself on the wrong end of an ethics hearing for something someday though.



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02 Sep 2009, 8:06 am

JohnnyD wrote:
I'm gay and when I finally came out (you can imagine what it's like trying to come to terms with that when you've got Asperger's - total nightmare!) in many ways it created as many problems as it solved. This feels different, this feels like the "homecoming" that coming out as gay never was. I've never regretted coming out, however problematical, could coming out as Aspie be equally necessary?

Jx


Hallo JohnnyD, and welcome and hope you like Wrong Planet. I'm quite new here myself, but I feel like I've been accepted already.

I think that being gay is actually quite often associated with Aspergers. I am sure that others on here will know more about that.

As to coming out as Aspergers, I don't know because I haven't done it. I'm still reeling from the discovery myself, after years and years of having people ask me if I'm autistic. It did occur to me the other day that the best thing to do might be not to tell anyone unless they ask. Only kind people have ever asked me, other people use more brutal words.



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02 Sep 2009, 9:42 am

AuntyCC wrote:
I think that being gay is actually quite often associated with Aspergers. I am sure that others on here will know more about that.

No, I don't believe this is true. I do, however, think it's more likely for someone who has AS and is gay to come out of the closet.

It's interesting, though... there is supposedly a large asexual population in the autistic community worldwide. Don't know how that fits in, though. There have been many threads on this issue.


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dadsgotas
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02 Sep 2009, 2:22 pm

fiddlerpianist wrote:
AuntyCC wrote:
I think that being gay is actually quite often associated with Aspergers. I am sure that others on here will know more about that.

No, I don't believe this is true. I do, however, think it's more likely for someone who has AS and is gay to come out of the closet.

It's interesting, though... there is supposedly a large asexual population in the autistic community worldwide. Don't know how that fits in, though. There have been many threads on this issue.


Could it be that some people have given up, in response to their experience? Many of us are asocial, not because we want to be, but because we've learned that for us, social doesn't work; it could be that some are asexual because for them, sexual hasn't worked.

As for the gay question, I agree: I think it's likely that just as we're less influenced by fashion and group behaviour, we're less likely to be persuaded not to think of ourselves as gay by an environment which is generally non-gay.

IMP.



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02 Sep 2009, 2:33 pm

dadsgotas wrote:
fiddlerpianist wrote:
AuntyCC wrote:
I think that being gay is actually quite often associated with Aspergers. I am sure that others on here will know more about that.

No, I don't believe this is true. I do, however, think it's more likely for someone who has AS and is gay to come out of the closet.

It's interesting, though... there is supposedly a large asexual population in the autistic community worldwide. Don't know how that fits in, though. There have been many threads on this issue.


Could it be that some people have given up, in response to their experience? Many of us are asocial, not because we want to be, but because we've learned that for us, social doesn't work; it could be that some are asexual because for them, sexual hasn't worked.

No, I don't believe that's true at all. And I'm pretty sure that's not how sexuality works.


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dadsgotas
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02 Sep 2009, 2:44 pm

It hasn't been my experience, so I'm not an expert. However, I think that's how Stephen Fry described his experience. Perhaps it's how it sometimes works.



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07 Sep 2009, 4:04 am

fiddlerpianist wrote:
Or they could simply say, "Well, you have some of the traits, but it doesn't appear to be affecting the quality of your daily life." Am I just imagining a situation like this?

There were times in my life when it certainly was, but how much of that was simply learning how to grow up? I was bullied, but so were a lot of people. I was bad at sports and was clumsy, but I learned to excel in things I was good at. I had some minor sensory issues, but those disappeared in adolescence. I had trouble making friends my own age, so I made friends with people who weren't my own age. In short, I know that I was different, but I don't know that I was that different.


I've been thinking about this. If my life had gone smoothly, I think I would be pretty much normal, merely an eccentric loner. Because I went through a very bad time in my teens, all my autistic traits got worse and I gained a couple of new ones. The fact is that there is not a separate autism spectrum, there is one personality spectrum and some of us must be somewhere in the middle. A bad or good experience at the crucial times of life such as early childhood and adolescence can tip a person one way or the other perhaps.



gippyden
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26 Sep 2009, 5:33 am

TPE2 wrote:
AuntyCC wrote:
Mdyar, I think there is some circularity in the assertion that is often made that most people with Aspergers are unemployed, (that is what you mean by self-sustain, yes?) It seems that anyone who can cope well enough to get a job, or in childhood who looks like they will be employable, is not given an assessment.


But (like I said in another thread) you have to draw the line between "AS" and "regular social akwardness" somewhere, and the capacity to live an independent live is a possible criteria.


I think your comment is too simplistic because it ignores all of the far reaching ramifications of anyone who has some level of AS. Employment and independence are just two of the challenges those with AS may have to deal with. Another important challenge is relationships and the physical and emotional overhead that is experienced in an AS partnership, particularly if one of the partners is neurotypical. Peopl with AS can learn to recognise AS traits and behaviours and develop strategies to succeed in their own personal relationships. I have not canvased all possible issues related with AS but the relationship issues alone indicate that all those with AS should be diagnosed, not just those with more severe presentations of an Austistic Spectrum Disorder.



AMD
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26 Sep 2009, 9:06 am

That lady sounded like she was ashamed of her son! While i don't go around telling everyone my son is dx'd with AS (except school staff and drs), i have no problem talking about it. I do not tell anyone that i think i may have it as well. That part is kept to myself. I don't know if i want to get a formal dx, but i definitely need to see someone about my social anxiety cause it is interferring with my daily life, i am just wondering if i should bring it all out into the open. My bf thinks i don't love him cause my libido is so low and i hate for him to touch or hug me. It would at least give him a reason why i am like this, but i am not even sure i would want to tell him cause he's the "you're full of sh*t" type of person. My idea of support is only through forums cause, well, my social anxiety gets in the way of human contact. I would have LOVED to have playdates for the kids or attend the parents support group for kids on the spectrum at our local autism place, but i just can't do it. I have tried to adapt. Tried to play the part, but i just can't. I will only have to get a dx for it and therapy (or the dreaded meds) to be able to function to at least a semi normal level.

I'm rambling. I guess what i am trying to say is maybe for some of us it is a good idea to get dx'd if you cannot adapt. As for the children, i think that is they need help in certain areas and they have a hard time adapting or not adapting at all, it is necessary to dx and get the help they need.



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27 Sep 2009, 10:38 am

Until now, i'm still escaping my diagnosis...I accept myself the way I am..I don't need a diagnosis.It will just label me!! ! :( how I wish my aunt would stop telling me "hey,you need to go to your psychiatrist!" which really sucks...I will try my very best not to get diagnosed :P


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28 Sep 2009, 2:50 am

Feeling split.

No doubt within myself I'm an aspie, with official diagnosis possibly coming up soon in a month or two, depending on the slow wheels of red tape bureauacracy. It's a relief after sixty years of not getting why I'm not getting it. Thinking it might ease my situation with professionals who label me criminal for nonviolent verbal meltdowns when they frustrate me, demanding behavior I can't produce and explanations why I can't keep friends without really listening to me.

But they're so sure institutionalization is the only recourse now, I'm not sure that wouldn't help them out in the wrong direction. I'd love to write a book to reduce social ostracism but fear social ostracism doing it. The things I read about NT reeactions to this stuff is way out there SCARY!!



gippyden
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03 Jul 2010, 6:46 am

fiddlerpianist wrote:
gippyden wrote:
I am 52 and have been diagnosed for a little over a year. I have a son with high functing autism and a daughter with aspergers. The diagnosis helped my son because he was able to access early intervention and has made an enormous difference to his development.
My daughter was not diagnosed until teens and it has helped her mother and I understand some of the behavoural eccentricities that she displays.

I always felt like a square peg in a round hole and even though have achieved post grad qualifications it has been a difficult road at times. Having a diagnosis, for me, was to answer gnawing suspicions that I might have it but not trusting my own judgement of my own thoughts and behaviour as objective. The diagnosis meant that there was a reason I thought and acted as I do.

If someone has that nagging suspicion that they may have aspergers or something on the autism spectrum then seek out a reliable professional and take the tests to answer your questions.

Also I am happy to discuss my situation with any one who may want more information.

So here is a question. Suppose you have known you are different your entire life and you have had a nagging suspicion of AS, but when you seek out a professional diagnosis they tell you that you definitely do not have it. Then what?


This is a good question and one which I do not have an answer. I was nervous when I went for the assessment that all this waa in my head and that I really may not have aspergers but perhaps some other underlying personallity disorder. I guess what made me get the assessment was that if I never found out what was different about me I would not be satisfied and I knew that this was the first step toward that, whether the diagnosis was positive or negative. I would have been frustrated if I had got a negative diagnosis but at least I would have know what it wasn't. It is really a personal thing whether you are going to take that step or not, and it took me a long time of thinking before I did.