Self-diagnosed people: why have you not obtained...

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A year ago I would have said the same thing... Here is my new perspective....

http://asdculture.wikispaces.com/To+Lab ... o+Label%3F

I would add that there isn't a facility diagnosing adults within 100 miles of where I live.

Only the rich or dependent children get diagnosed.

It doesn't matter. Even if I don't say the right words for the Terminology Police, it's helpful to have something to suspect and useful information to help me cope.

If someone self diagnoses it is because they feel they have an autistic neurology. Just becasue someone can 'fit in' and feel that they do well enough to not ask for intervention doesn't mean they do not still struggle with their autism.

puff never said he thought he had a disability, that was your word. He merely implied that he feels he is on the spectrum but doesn't see why he needs an official dx if he's not getting help. Just because he doesn't want or feel he needs help doesn't invalidate his autistic traits. Faking it can be exhausting to the point of depression, anxiety and breakdown.

I suppose the question is - is it possible to be autistic and not be disabled? Or does an autism dx automatically make you disabled?

I never self diagnosed with an ASD, however I am self diagnosed with Post Traumatic Stress Disorder,

I am not seeking a professional diagnoses due to the difficulty in talking about, my thoughts that it wont be helpful and I figure I have so much already that I don't want to rock the boat.

I already have an official diagnosis of ADD-PI, and take meds for it (Adderall at the moment due to the Amphetamine Famine, but straight dextroamphetamine is much better for me).

I could pay for the tests to make my aspiedom official, but what's the point? I might go for it if it meant my dr. would let me try desoxyn, but otherwise, it's not like I'd get anything tangible from an official diagnosis besides formal bragging rights here @ WP. By any standard, I'm a blatantly and painfully-obvious aspie (ok, no major sensory-integration issues I'm aware of, but everything else (stimming, socialization difficulties, obsessive special interests, inability to read others' feelings, faceblindness, meltdowns, and more) is off the scale.

I rarely progress all the way to outright meltdown as an adult, but that's mostly because long ago I became aggressive & unapologetic about removing myself from triggering situations long before I get pushed over the edge. As a child, I wasn't allowed to do that, and my mom in particular was an expert at escalating even the slightest bit of stress into a full-blown screaming tantrum. Now, I just leave and turn off my phone if she tries doing it to me

This is the specific question that led me to register on this forum, so I find it a great and fortuitous coincidence that there is a current topic devoted to it.

A little over a year ago I broached the subject of AS with my GP, and she was like, "Oh heck yes!" She gave me a self-assessment and I "aced" it. (Ha.) She made a referral and I got up the gumption after a few days to give them a call. I had to leave a message, and they didn't respond, and for some reason this kept me from wanting/being able to call again.

I go back and forth about wanting an official diagnosis. There are aspects of my life with which I'm not as happy as I could be, and I think that that might be related to ASD. Maybe additional coping skills or even just another perspective might be of some use. Perhaps I could just read a book? (Or a forum?) I'm lucky in that there's a local university-based nonprofit that offers assessment and other resources free of charge, so money is not an issue that will prevent me from pursuing this.

In any case, I'm very interested in reading everyone else's perspectives and making an informed decision about what to do next.

[First post; I guess I should do a proper one of those introductory things in the designated area as well.]

Here is the relevant text from my blog (above)

Pros of Labels and Labeling:
Recently I had dinner with a renowned ASD specialist (professional sort) who was so impressed with my abilities to cater to her whims and needs on our outing that she assumed that my autism was not significant enough to warrant a label. What she did not know or understand was the sum total number of hours and stress that I had put into making that outing pleasant for us both. I had actually driven into the area where we were to meet the night before so that I could acclimate to the environment of the town. Then during the day, I had visited the place where we were to eat and had walked the path to the restaurant several times to acclimate to that as well. The result was that I could be very "social" in her eyes and I could care about her since my sensory processing issues and my anxiety were fairly minimized.

One of the hot topics in the ASD adult community today is the question of what are the Benefits to Adult Diangosis?I do not fault this ASD specialist for her assumption that I did not need to be diangosed. Many people might assume that an adult who is working in a job such as mine would not need to be formally diagnosed. Heck, even I assumed this. But a year after the formal DX here is what is happening...

I would have lost my job last year if not for my DX. I am going to receive the very best review of my career this year because of my DX. I have avoided going to the hospital this year for panic attacks, ulcers, high blood pressure and/or physical exhaustion this year because of my DX (this is the first year in my adult life that I have managed this). I was able to ask for help with my finances and actually find someone willing to work with me because of my DX. I am able to go to the doctor now without being ridiculed because of my DX. I no longer have any arguments with any of my friends over things that I do not understand because of my DX. I recently avoided "theft" charges at work because of my DX when I had to quickly exit an overwhelming cafe scene. I could go on and on.... The point is that one does not receive a DX of ASD without the "significant impairment of everyday functioning" part (at least not in my circle).

Having ASD as an entry point to "Karla" makes relationships, jobs and overall life awareness so much easier and more clear.

An ASD label gives me a framework. It gives me permission to take more frequent rests and to lower the expectations I had imposed on myself. Yep. That is exactly the thing that these well-meaning caregivers want to avoid. But here is the thing.... Their way of looking at it assumes that I am a lazy person and that I am seeking the "easy" way out. They use the reasoning that they are saving me from the negativities associated with "disability" and therefore wonder why I am not grateful to them for their care/concern. The thing is, they fail to realize that what they are actually doing is imposing "normal" on me by refusing to let me say that I am disabled. Without the label, I am left to wonder why it is that all the people around me seem to be able to do more than me. They do not get as tired. They do not go to the hospital for exhaustion. I am left to feel like an idiot because I have no awareness of my limitations. I am left to feel like a failure because there is no excuse. The "excuse" is important to my life. It is important to the quality of my life. So far 100% of the ASD adults I talk to agree.

No, it doesn't mean they are cured. Thinking in terms of having it or being cured is too black and white. Even thinking in terms of having it or not is too black and white.

Why should those of us who are different have to have a certification from a psychiatrist (or other mental health professional) to say we are different? Homosexuals don't, so why should people on the autistic spectrum?

There are aspects of autism that are just differences, not better or worse than being normal. "Cured" would mean no more autism. Which is something very different from getting to a point where being certified as autistic won't benefit us.

My own answer to the question, because I don't see it as benefiting me, and because I don't think I'd qualify for a diagnosis. (At least not based on the present, if they were to retroactively diagnose based on childhood, who knows.) That doesn't mean if I ever could have qualified for a diagnosis, I'm "cured".

I actually don't like that term "broader autistic phenotype" because it too much assumes a genetic basis, and I don't think it's that simple, though genetics are involved.

I have a few reasons for not getting an official diagnosis. This does not mean that I will never attempt to get one, if the proper opportunity presents itsself.
1) Lack of competent, knowledgeable medical professional to diagnose me
2) Money
3)The growing belief that it would do little for me other than satisfy my curiousity and possibly confirm my beliefs about myself. When I started the process of obtaining a diagnosis, I was very hopeful and very naive and believed that I could obtain a diagnosis and that it would be helpful to me in the form of self-knowledge, possibly accomodations at school and work, and therapies to help me to function more effectively and happily. What I have learned is that finding someone qualified to give me an accurate diagnosis may be impossible, all psychological treatment is ridiculously expensive, and that the therapy I have found is minimally helpful. I have also found that in the real world, educators and employers are not often happy to accomodate differences, and that to ask for accomodation and understanding can be a big mistake that can cause additional problems.

I also do not see myself as "disabled"-although my dx of ADHD is technically enough for that designation. What I believe to be AS definetely presents difficulties and problems for me in my everyday life. I have learned to adapt and overcome or work around many problems. At the end of the day, I feel I have no choice not to support myself and manage a "normal" life as I have done since I was pushed out into the world on my own at sixteen. I haven't always done it well, and I don't always do it well now. But I survive.

Right now I'm not pursuing a diagnosis because all of my energy is going to dealing with my daughter's issues. That is taking a lot of energy.

Ok, I'm going to get snarky for a bit here. Unless Alex decides to require some proof of diagnosis before anyone can become a member of this forum I have as much right here as anyone. The particular constellation of difficulties that add up to ASD has caused me no end of difficulties all through my life. It has affected my relationships, my finances, my children, every single aspect of my life. You have no idea and no right to judge. (I am not meaning that to any particular person.)

I am on Medicare because I finally hit the wall so I'm on disability. I can't afford a private diagnosis, even if I could find someone who can diagnose adults. Perhaps I will find someone through my daughter's process. After I have her settled maybe I'll have the energy to find options.

In the meantime, this all makes sense out of a lot of my life.

You're right, and there's not likely to ever be such a requirement.

According to the DSM V proposal one must have limits and impairment in everyday life.

That would suggest a disability, no?

I'm not self-diagnosed, I just have a suspicion. I've tried bringing up the topic of having an ASD or ADHD with social anxiety with my parents but I couldn't express the reasons well enough so I've been ignored. I'm not old enough to seek a diagnosis by myself but I'm trying to talk about it with a psychologist in my family to see if she can help. It's going to take a lot of time, though.

same here for me as SylviaLynn, all my energy goes into helping my child.

Although I would be lying if I said i wasn't finding great comfort in the realization that I do have Asperger's as it explains so much that I thought i was just so wrong in, now I don't think wrong, I just think different.

It is crystal clear to me as I have so much of the same tendencies as my son who has been diagnosed that I am on the spectrum. That's enough for me at this point.

Although it does impair me from having a job out of the home, if there was a way that I could get career training help due to this 'disability' then I would go for a formal diagnosis. But at 43 and spending so much time helping my child, I don't see how I would have time or energy for a job anyway, so i'll probably just keep going the way I am.

I also have a worry that the school that my son goes to would listen to me less if I had a formal diagnosis and they found out, I already have to fight so hard and appear so competent as it is to get any help for him from them. (it's sad, I have to pretend that I don't work because I'm a spoiled house wife rather then let on that I can't handle working out of the home.)

So I guess add worried about prejudism to the list of reasons not to.

Perhaps your school has a counsellor you could talk about it with.

I did not pursue a diagnosis for a long time because I was ridiculed by my family for believing that I have AS. When I was a kid, AS didn't exist and the only kids that got help were the really, really, really bad ones or really intellectually impaired individuals. I fit neither criteria. I've always been socially awkward, but it's getting even worse. I can't take it any more so I'm going to attempt a diagnosis next month.