To the undiagnosed aspies: Is diagnosis important to you?

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its not that important. The only thing it would do for me is give me some extra time in classes, thats about it. I'm pretty sure I have it to some milder degree so theres really no need for a formal diagnosis.

No...can't say that I'm much interested in a diagnosis either. I know I have an abysmal memory for faces. Calling it 'prosapagnosia' doesn't change the fact, and just complicates explanations. Perfumes give me migraines and nausea...so what if the cause is 'a sensory issue related to Asperger's' instead of a simple allergy? And as for Asperger's itself, I'm already an oddball. Always have been and always will be. The label won't help and I'll probably end up using it as a crutch and/or excuse, and boring people with explanations they don't need or want.

Yes. It is important to me. It is important because the way my mind works I can't leave such a thing unresolved. It has little to do with what other people think or what might even be best for me in my relationships, work and other aspects of my life. Once fixated on something, I can't let it go until it is answered. It may not even be a good thing. Having invested so much into this exploration of Asperger's and autism, to have a professional pronounce that autism is not a factor would be a blow to my psyche.

Ironically, this fixation is a symptom, isn't it?

I came across my own disgnosis by going through a step by step process whilst trying to help my son. I realized that nothing else would explain his symptoms and issues other than AS and the penny suddenly dropped with me because of my own experiences in childhood. I have shared very little about my childhood with anyone I know because it was such a bad experience as I did not fit in anywhere with family and had no close friends, identical to what my son has gone through. He is now awaiting a formal assessment but as for myself I don't think it would be worth while. I could identify other family members who are on the spectrum too but I have never said anything of what we are going through as I have little connection with them. I was openly critized by relatives early on who wondered when I would become normal and who would ask my mother what she was going to do about me, as if she could do anything! This took place back in the 60's, I was sent for an assessment when I was 5 but AS was not clearly recognised then. I have struggled on many issues but have managed to adapt somewhat and had a successful career along the way. These days I deal with my kids issues and keep to myself and the great benefit they have at least is complete understanding from me. It would be nice to have a few friends but I don't. As for this site it is probably the first place I have felt connected to any form of community.

Yes, VERY. I just don't get the approach which I often come across on this board - that being diagnosed is not important for someone because this person thinks it's the very awareness that he/she isn't alone which matters.

I am pursuing a diagnosis, because I would like objective confirmation that I am not deluding myself, and because I would like to be able to talk more openly about my issues without that "self-labeled" tag hanging over my head. I would like to meet more people like myself.

That said, if I can't get a diagnosis I'm not too worried. I get all the psychological assistance that i need because of other conditions (depression, social phobia, social anxiety, PTSD, general anxiety). There is no real treatment for ASD.

Getting a useful diagnosis as a 49-year old adult is such a challenge that I am not sure it is worth the trouble. Finding an expert who is willing to listen to you is difficult. Poor understanding is common among people who should know better. The system is designed for people with severe disabilities, and those of us who do not meet those requirements are left out.

Currently not interested.

I am vaguely interested in the idea of confirmation but that would require revealing quite a bit about myself to a stranger. The cost/benefit just isnt there for me at the moment.

I'm currently trying to get diagnosis.

Diagnosis is vital for me, I am certain I have asperger's as there are simply too many similarities for me not to be either asperger's or somewhere on the spectrum (HF autism is also a possibility, but I feel asperger's is more likely), however having an objective confirmation would cement the fact that I am aspie. Years of thinking I was a freak, that I was the only person like this, discovering asperger's and becoming a member of the community has meant a lot to me - but that's worth nothing until I really know for sure that I am an aspie.

The main push for me was the job centre and problems they are causing me, throughout my life I've been able to avoid certain situations or found other excuses for not being capable of doing certain things, after all I never had the terminology to explain 'I have Asperger's Syndrome so find X, Y, and Z difficult' or 'That was a meltdown, it doesn't mean I'm overly sensitive' - these sort of explanations don't cut it with the job centre, even after informing them of asperger's their willingness to accommodate is limited. Having a formal diagnosis is being able to explain that I DO have asperger's, it means that when the job centre, employers, companies etc. try to walk all over me or are prejudice towards me that I have a leg to stand on, legally a formal diagnosis is worth more than my claim that I have asperger's.

A diagnosis can be helpful in the workplace environment. Diagnosed people on the Autism Spectrum are covered by the American's With Disabilities Act. So, for instance, if a person suffers from sensory issues with sound, and a co-worker is playing loud music from a radio, an accommodation will be need to be made because of AS.

It might not increase popularity, but it would be better than resigning because the music was making it impossible to do the job.

Another issue is the medical documentation of the diagnosis and associated medical history. If the condition and/or co-morbid conditions become totally and permanently disabling, a history of medical documentation could be the difference in qualifying for financial assistance in a timely manner vs. waiting years.

I have 4/6 kids that are diagnosed and undiagnosed and I know that neither my current wife( very understanding) or my ex(Not at all understanding) do not have AS and I have spotted signs in my mother and grandfather. I would appreciate it if someone could point me to a Doc that knows even the slightest thing about AS in Central Florida USA.

Thanks

Don

I sympathise with the trouble you're havimg with the [REDACTED] Bru. They went out of their way to drive me to the edge of suicide.

If a diagnosis helps, I say go for it.

I got a long-term sick line on the basis of a comorbid problem (the *current* diagnosis is Borderline Personality Disorder). While I'm the first to accept I'd rather be working, when employers won't take you on because you can't interact with other(?) humans getting the vermin at the DWP off your neck counts for a lot (although there's always those nasty, vindictive, intrusive "medical" examinations).

So, good luck wth that!

Hmm. Why am I not surprised at this news?

If you could get a formal diagnosis from the NHS it would be easier to get Disability Living Allowance.

Niall

(Cynic is an optimist's term for a realist!)

I didn't see that comment before, and I call B.S. on your doctor's claim.

It's a health issue so NHS do cover it, I'm going through NHS myself, at the moment they are stalled because the assessment isn't available in my area (whatever that means), I have to go via a regional pervasive development disorder service about five minutes bus ride away - this will cost £2000 for which separate funding is required from the primary care trust...which seems a lot, but really isn't. It's just bureaucracy - it may be that your primary care trust doesn't cover this, that it may be more effort or cost to them, but there WILL be a way.

What tall-p said about "empathy" is 100% me:

People I work with think those things about me when I say that some things people talk about are best left to the imagination. They expect others to join in with them in this ritual or whatever it is. I am viewed as cold and self-involved.

Reptilian said:



I have been forced to do so and heavily criticized for not complying. It was a source of family misunderstandings.

A thread I started also has some insight.

http://www.wrongplanet.net/postt151726.html

Is diagnosis important? Yes and no. No because I already have an understanding and identification. But it is important because I have someone who is willing to be of assistance and because of what my PCP said. I feel the need to follow through. Of course, there is always the possibility that I could be totally dismissed by someone who looks only at my current situation and places more weight on the fact that I have a job or that I have friends without going deeper and finding out what challenges I have had in dealing with those things and other areas of life.

theWanderer said it best:

Good thread...this is something I've been mulling over since I came to discover that I probably have AS five months ago. I'm 46, and so at this point in my life I really don't see an 'official' diagnosis as really helping me in any way, but can see how it might hurt me in some areas. I'm not entirely sure this is something I'd want in my medical records. I've taken the online tests several times, and my analysis of the results seems to indicate that I'm on the edge of NT/AS 'dividing line' (if there is such a thing), and so I'm able to cope with my AS-like traits by following 'scripts' I've composed many years ago. I read the following in a thread last week and totally agree with him:

The main areas where AS is affecting me is in the social arena. Though I've been married for about 7 years, I've got a very understanding and patient wife. She's my only real friend, but I'm not overly interested in making any more. However, I do have concerns about my daily interactions with my four young children. My lack of empathy towards them and the general lack of interest in the day-to-day details of their lives is causing me to write new 'scripts' in order to fake interest, and I can only hope I get them written and enacted before they write me off as a self-centered SOB.

I guess the bottom line is....if there was actually some form of effective treatment, I might consider getting diagnosed. My negative feelings about a diagnosis probably wouldn't change, but I would do it anyway, for the sake of my children. The fact that it's difficult and expensive to even get diagnosed in the first place, combined with the lack of effective treatment, leads me to the conclusion that I'd just be better off learning how to cope with the AS traits I have and letting everyone dismiss my behavior as just a quirky personality.

My Husband is an "Undiagnosed" Aspie. He and his mother did not know anything really about Aspergers. Before I came into there life. His mother had met one person who was Autistic, and that was all she knew about it really.. was what she knew from meeting that one person. Well, my husband Xane and I was talking, and we believed he had it. I started to tell my mother, and before I really had a chance, she told me how her and my father believed it too. We of course did alot of research and he now "knows" he is an Aspie. We were talking to his sister, who was in a foster home at the time. AND!! SURPRISE!! When we started to tell her that we seriously believe he had it (this was a few years back).. she had a little surprise for us, she is an ASPIE too. But, the CA Goverment never informed her mother of her DX, she also has Bi-polar Mania. But, they never informed her. They hid it!! ! She was taken away from them, due to her "Outburts", etc. Because of her problems, she was ripped from her home and placed into the foster care system in CA. After turning 18, she now lives in SC with us.

My husband is not wanting to get a DX, because I am an Aspie. Out daughter is Autistic.. (DX: Autistic Disorder) He is worried if he does get a DX, that the government will take out baby girl from us. That is something he is terrified about. We already had probs. when I was in the hosp. (During delivery) Some nurse, took and twisted my words, and because I had Aspergers and was not on meds. She tried to call CPS on me. So before even leaving the Hosp. I had the CPS called, and was trying to take my daughter away. Like her father said, the birth of your daughter is suppose to be a beautiful thing. But, it was tainted with blood, because of what the hospital did to us. (They also treated us like crap, thinking the only insurance I had was my medicaid, but I was also on my fathers insurance. Once they found that out they changed there tune.) They even said, that I "pushed" them into taking her to the nursery. Which was so not true. They asked me, I was so weak, was so tired (from being up for a couple of days straight), so I said "Please, I need some sleep." But, the CPS lady said that, they said I "Pushed" them into taking her. the only nice person at that Hospital was the lady who worked in the nursery. Though, after we found out what they said. We only allowed her to go to the nursery once after that.
My husband told my since then, that the hospital no longer has a maturity ward. Which is great, but I feel for the old sweet lady who cared for the babys.

I had something else to say, but I do not remember. -.-