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Maerlyn138
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19 Mar 2012, 12:48 am

Does anyone feel that they may have gained an advantage as far as developing life skills? Or do you feel that your life would have been better if you would have been diagnosed earlier in life?


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DeadalusRex
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19 Mar 2012, 2:12 am

Having a label is a two edged thing-- it can get you services you need, and can help you understand what's going on with your life, and stop blaming yourself for things that are beyond your control, and it can help you explain issues to others-- and for all that the sooner the better. At the same time especially dealing with educational and other institutions it can make it easy for people to write you off. On more than one occasion I've been talking to a professional about some issue or other and they appear genuinely interested in understanding and helping-- and then I've shown them a copy of my psychometric assessment and their response immediately changes to "wow look at the discrepency between those sub tests -- no wonder you have problems! huh... sux to be you sorry, can't help! (well not in so many words-- but even with my limited ability to pick up on body language it's pretty obvious what they are thinking.) Getting stuck in any sort of remedial education is often the kiss of death for actually achieveing your potential.

Having said all that I was diagnosed as having a learning disability in elementary school, but my issues with social skills were never even considered even though they were obvious. It sure would have been helpful to have had some help with it earlier. I guess what I'm trying to say is that it's complicated :D



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19 Mar 2012, 3:44 am

I am self diagnosed through personal research and online testing. My sister also told me she believed I have Asperger's, before she knew that I had found out about it.

I am in my early 50s and first learned about Asperger's Syndrome about 8-10 years ago in a magazine article. I immediately saw myself in the condition, and read any more articles that came my way. I finally started doing online research and testing, which confirmed my belief that I have Asperger's. I am really too old to get any real assistance from the government for this, so I have not bothered to pursue a formal diagnosis, but it did help me in a very real psychological sense, as I now know what is wrong with me. Not knowing why I am the way I am for 4 & 1/2 decades was a terrible burden to bear.

I am glad that I finally found out. It has definitely provided some mental relief, because I now understand why I am different from NTs.


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19 Mar 2012, 6:01 am

I'm exploring the Autism spectrum as it still has a lot to answer for.

In hindsight, I does explain my poor grades in the basics and my extreme disinterest and difficulty in socialising. If it was picked up during school life, I may have been a petter person for it.

Recently with extencive counceling, with having difficulity in learning my degree and personality/sexuality issues, being unable to emotionally connect with people, eratic behavour, limited interests and total inability to understand fiction, plus other things, the concelor suggested i'm within the Autism spectrum somewhere (as people like that will not outright say it).

Alas I have taken a medical and psycological assessment to confirm my suspicions. Numerous online retesting suggests Aspergers. If I do get it confirmed I will not use it as an excuse for things.


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one-A-N
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19 Mar 2012, 6:06 am

Diagnosis just wasn't an option when I was growing up. AS was added to the DSM when I was about 40 years old - and was practically unknown in the English-speaking world until I was in my late 20s. A childhood or teenage diagnosis was simply impossible.

A late diagnosis has helped me to understand myself better, and I have had access to an ASD specialist subsidised under national health insurance, although that was on the basis of my general stress and anxiety levels rather than specifically because of ASD. I chose to see an ASD specialist rather than a generalist, because I knew that people with ASD need to be handled differently to other clients. I think the quality of help for people with ASD now is much better than it would have been when I was growing up.

Despite the lack of knowledge about ASD or a diagnosis in my teens and 20s, I did have access to social skills training and other forms of social support which were beneficial. I guess spending a life of trying to fit into the NT ideal has benefits as well as drawbacks. The benefit is that you do learn skills, you may well learn to "fake it". But the drawback is a lifetime of wondering why you never really fit in, why everyone else can be NT naturally but you always feel unnatural and stilted playing that part. A diagnosis can resolve that tension.



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19 Mar 2012, 7:12 am

I agree with one-A-N that I am too old to have been diagnosed as a child. If anything, I would have ended up in special ed, and that would have destroyed any thought of a career (not that the one I have had has been so great). At this a diagnosis will not do me any good.

Pretending we are talking about the present day, I will rephrase to "is it better to be diagnosed as a child or as an adult?"

It would have made a lot of a difference in my family life. My parents might have actually become involved in my social education, instead of leaving everything up to chance. At school, I might not have been overlooked as "stupid" when i was anything bot, and I may have had some help with the bullying. I might also have known that you are allowed to complain about having rocks thrown at you, or getting hit by others.

So, yes, an earlier diagnosis may have benefited me.



Maerlyn138
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19 Mar 2012, 7:21 pm

I guess that's a part of it i ever thought of. It's true, I went through grade school in the 70's and special ed was defiently more special back then.
I wonder though if it made me a stronger person, I mean I am so relieved to finally has ann explanation and wouldn't go back for anything, but I feel like maybe i gained more by having to struggle for 30+ years as much as it sucked. Any thoughts on that?


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tim1982
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22 Mar 2012, 2:12 am

I cant think of any. I know im so bad off mentally that they are trying to get me disability, but because im 29, and wasnt diagnosed till very recently and never had a job long enough to get the SSI needed points or whatever its called im screwed. I have no way of making a living or going to school. Get diagnosed before your 18, is all I know. They dont seem to care after that.



Maerlyn138
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22 Mar 2012, 3:28 am

They probably figure since you made it this far into life you should be able to make it on your own. I went into the Air Force at 20 and managed my 4 years. I hated it though I did get stationed it Germany, which was cool. I was trained as a respiratory therapist, which ended up being a good civilian job. I have two kids from my first marriage so i had extra motivation to keep jobs even though it was unpleasant at times


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22 Mar 2012, 5:49 pm

Well I was diagnosed with ADHD when I was 6. This helped a bit, but I wasn't diagnosed with AS until I was 17. Now I guess thats early compared to some people here, but still. Honestly, I don't know if I'm bettter off for my late diagnosis. But heck, I didn't turn out too bad.


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Maerlyn138
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22 Mar 2012, 7:08 pm

Exactly. I'm wondering if having to deal with AS over a long period, without knowing precisely what is wrong, can actually improve your overall functioning through the development of a set of coping skills that a person diagnosed as a child would not have? I guess I am also wondering if I had been diagnosed years ago would it have altered my overall social development from what it is now? I am guessing that it would have , but still.


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bergie
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22 Mar 2012, 11:46 pm

My early adulthood was a series of failures. I think that if I had been diagnosed as Aspergers then, I would have given up instead of picking myself up every time I fell down. I was diagnosed last year at age 30 and know that I will never be "normal" but I think I can make myself be comfortable as myself.



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23 Mar 2012, 1:51 pm

Yeah. I see one big advantage.

I've spent my whole life fighting tooth and nail to be myself and be functional. I falter and fail more often than others, it's still obvious that there's something "wrong" with me, but by and large I've made it.

I am, in short, doing great-- for someone with Asperger's.

Given the attitude of a lot of the professionals-- medical, educational, and mental health-- that I've crossed paths with, if I'd been diagnosed at 19 (1997, shortly after the diagnosis hit the DSM), I would have either been forcibly normalized or told to give up so eloquently and so many times that I would have simply done it.

"You have Asperger's syndrome. You can't do that. You should be thankful you're not living alone in the street. What more do you want? Now take your Risperdal and come back next week..."

Just from a little more than a year of seeking help-- to deal with a situation that would throw a lot of NTs for a loop-- I've heard that so many times that now I fight a daily battle to believe that I'm as good as anyone else, that it may come harder (and sometimes may not be worth it) but to believe that "If they can do it, I can do it."

To teach my son the same thing, so he'll have a better road than his momma.

It might have helped with some things-- or a lot of things, if I'd found the right help-- but by and large I think an earlier diagnosis would have killed me. A late diagnosis almost did, and I was a lot more impressionable when I was young.


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Maerlyn138
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24 Mar 2012, 3:12 am

Good answers all around. I came of age in the '80's. I am confident that if I'd been given a diagnosis of ASD back then I would've been marginalized and not had the opportunites that I've had. I owuldn't have gotten in to the Air Force, been trained as an respiratory therapist, and I wouldn't have the good paying job I had today. That's not to say something else would not have come up, but at least in this reality :) my finances are secure.
It's almost funny though. I can tell that the people I work with know something is different but can't quite lock it down. I can act NT enough for awhile (not my whole 12 hour shift) but I stillneed breaks.


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27 Mar 2012, 10:47 pm

I see too many younger people investing too much of their identity and sense of worth in their diagnosis. I see PARENTS of dx'd kids doing this to their kids too. All during my pre-dx life, I never wanted to be a label or dx or a posterchild of anything--I just wanted to understand why i had the issues I had so I live the life I wanted. I don't see that in many younger people in the autism community--they want to "spread autism awareness" or "be a positive face for autism" or "show how autism is a difference, not a disorder." I have to wonder how exhausting that is. When I was these people's ages, I wanted to be a musician and writer, and to study art, music, philosophy, and travel, make friends, do stuff I liked. I just wanted to live life, not go on a crusade because I felt obligated to some community. That's the more obvious difference to me between someone like me who was dx'd late in life (and also, before the advent of Autism Speaks and such) and people dx'd younger and more recently.



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28 Mar 2012, 4:39 pm

one-A-N wrote:
Despite the lack of knowledge about ASD or a diagnosis in my teens and 20s, I did have access to social skills training and other forms of social support which were beneficial. I guess spending a life of trying to fit into the NT ideal has benefits as well as drawbacks. The benefit is that you do learn skills, you may well learn to "fake it". But the drawback is a lifetime of wondering why you never really fit in, why everyone else can be NT naturally but you always feel unnatural and stilted playing that part. A diagnosis can resolve that tension.


This is how I feel, and for the same reasons.

I've spent 35 years not knowing anything BUT how to continually adjust myself to be "more normal" and to better fit in. Being a "loner" as a child and never asking for help from others wasn't seen as symptoms of a problem; my parents and teachers treated it as a good, positive sign that I was really smart and didn't need their intervention, and so they left me alone as long as I got my homework done and kept making good grades. I never took bullying personal and instead chalked it up to their own issues. My behaviors were never seen as something to be "fixed". Autistic was a diagnosis reserved for very low-functioning individuals, usually combined with the diagnosis of low IQ or ret*d and a belief that there was no hope. I didn't fit that particular bill.

The pluses: I grew up as a weird NT despite it not being who I really am, simply because no other label existed for someone like me. I know when it feels fake and when I'm expending more energy to maintain a facade (and that's also when I'm most likely to screw up or otherwise fail), and I know when I really wish I could just be myself (which I'm working on now), but I've been doing this for so long that "fitting in" doesn't feel quite so much like a chore as much as it's just a bad habit.

The negatives: I am expected to continue to be a weird NT who "knows better". I am expected to continue to act this part that has grown up and around me my whole life, and I am expected to answer for any deviations that creep in without using the "a" word. I'm not allowed to use "autistic" or "Asperger's" as an excuse, even if I were to go and get an official diagnosis. In my world, that's seen as a cop out, and it would probably take more effort to defend a diagnosis against others' accusations than the effort it is now costing me to back off from being too much not myself and gradually reintroducing my natural, native tendencies. Being called a sociopath because I made some mistakes hurts, but walking away from those people and finding other friends that can accept me more for who I really am instead of trying and failing at getting others to accept the fake me will be worth it in the long run.