Is it worth seeking a diagnosis as an adult?

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Is there any hope that you could contact your adopted mother and ask to try again? With the new knowledge, maybe the two of you could work to build something new? She put many years into trying to be your mother - maybe she thinks it's her fault? She got shafted by this too. Mother-guilt is inevitable, I think. Sometimes mothers even think they caused it <substitute anything for "it">. Could you try to talk to her and take that tack, that you both should have been told? What do you think?

Last edited by Claradoon on 19 May 2014, 10:53 pm, edited 1 time in total.

Vocational Rehabilitation is available.

Maybe another state? Are there any states hopefully not to far from Louisiana and not to urban that would provide something.

Make sure to check on this. I didn't think my insurance would pay either, or at least wouldn't pay much. I was quoted a price of $530 for my assessment interview and $1650 for the testing. All I had to pay was $40 co-pay per visit, so in all it cost me $80.

As far as whether it will be worth it, we'll see. I was preliminarily diagnosed after my assessment interview in February. I'm currently waiting on my results after my testing a week or so ago. Just learning about ASD and my place on the spectrum has made a HUGE difference in my life, and has explained SO much. But whether a Dx will help me in the future remains to be seen. At 54, most of the problems ASD caused me are in the past. I've either learned coping skills for certain issues, others just resolved on their own, and others I just live with. I only wish a diagnosis had been possible when I was so disabled as a teen. But unfortunately, by the time Asperger's was an official diagnosis, I was 34 and was starting to improve.

I just looked that up and here are the criteria for being considered disabled in the state where I live:
By law, Social Security has a very strict definition of adult disability. To be found disabled:

You must be unable to do any substantial work because of your medical condition(s); and
Your medical condition(s) must have lasted, or be expected to last, at least 1 year, or be expected to result in your death

And it did not show up in the copy/paste but in the first sentence the word "any" is bolded and slanted. So they are very serious that you understand that. So I guess whatever the definition of "substantial work" is would matter. So the fact that I am able bodied and high functioning means that I probably can't qualify within the context of this definition. And this is actually what I have been told by Autism counselors. They have literally told me that if someone manages to live to be older than 18 and not diagnosed, they are able to function well enough to not need any help so that is why they don't qualify for anything. I am quoting this almost verbatim.

Last edited by skibum on 20 May 2014, 12:16 am, edited 3 times in total.

Wow, That is amazing. I wonder if it's a state thing with my insurance because they were adamant about it.

I got my plan through the Healthcare Marketplace, aka "Obamacare". People can gripe and complain about that all they want, but so far I am completely happy with it. My plan is with Blue Cross/Blue Shield and costs me $95.57 a month (I get a credit of $358 a month because I'm low-income, all of which goes towards the plan). I haven't had to use it for physical ailments yet, but it really came through for me this go-round. Whether it's a state thing that you're not covered I don't know, because as of the beginning of 2014, federal law mandates that mental issues are to be covered at the same level at physical issues.

My Aunt got Obamacare and she loves it. She says it's the best insurance she has ever had. We have Blue Cross Blue Shield through my husband's job and I talked to them about this last month so it was well into 2014 and they absolutely refuse to pay for an adult diagnosis.

This is the bit I don't understand. If you don't have to tell anybody, then how do you use the power? But if you do tell people, then what difference will it make?

I am confident in my self-diagnosis of 'ADHD plus many many signs of Asperger's'. My family knows the details, and make allowances, but a formal diagnosis would make no difference to anything.

The chaos of my life was caused, I believe, by ADHD, and the loneliness was caused by Asperger's. My anticipated CV/Resume was all about a University education and a professional career, but the reality was a never-ending string of bucket jobs. I was always reliable and hard-working, so my oddities were always tolerated. I am now retired, and I was looking forward to being able at last to become a fully-certificated recluse. The paradox is that I am now able to choose the times when I feel able to deal with the pressures of social interaction, and am beginning to acquire some of the necessary skills.

I am regularly invited by the UK National Health Service to join their screening programmes for the elderly, but, TBH, I am hoping for a simple, and reasonably soon, death - no way do I want to need help to empty my bowels. If the NHS were to invite me to join a research programme into the life-long effects of Autism, then I would jump at the opportunity. But since I have never been diagnosed, it is unlikely to happen.

I think that a formal diagnosis of Autism-related conditions is of very little use to the individual, unless it is part of a well-funded research programme.

I think it depends upon your situation whether it's worth paying for an official diagnosis. For me, it was totally what I needed for the reason that no one ever takes anything I have to say about my problems I have seriously. Being validated and knowing exactly what's wrong was very emotionally satisfying.

Teyverus - I know exactly where you are coming from. But now that you are 'validated', are you taken more seriously? Have you felt able to be more assertive in your attempts to explain your difficulties? Has the diagnosis helped you to overcome some of your difficulties, or has it simply confirmed that your difficulties are insurmountable?

For me it was worth getting a diagnosis as an adult. I had gone through life wondering why I was different. I wasn't miserable being different, but I wanted to know why. And getting the professional diagnosis of Asperger's brought me closer to learning who I was. Now as I allow certain people around me to know I am autistic, they have a better understanding of why I am different.

If you'll excuse me playing Devil's Advocate, if I were to be formally diagnosed few would believe it anyway, most of all my parents. My mother even gets angry when I tell I was looking to get formally diagnosed, almost like I was (in)voluntarily committing myself for life. The ones who know I have it told me I have it all say it's pointless to get diagnosed at my age, even the local Autism society. Again, the obvious reason is the cost. I would have to sell my car, cripple my career prospects and be set back in life for what? To be told I'm not mentally ill, schizophrenic and have ASD level 1/Aspergers? To tell me what I already know? What's the point? Sacrifice my life to be a martyr just so I can advocate for HFA adults? To me, this is not like cancer or diabetes and more like a Doctor telling me $1500 later that I am a tall, straight male aged 31. Gee, I think I already figured that out. My whole life I have had to correct "experts" anyway starting in Grade 2.

I am sorry so to hear that this has happened to you. I remember being at the employment centre about 8 years ago and the hardest part was not being unemployed but the fact I did not fit the profile of their typical client in any way. I was the only one there with a University Degree, the only one who didn't smoke and probably the only one not on drugs. Without being rude, the people there were the dregs of society that not only were they very low class, but they had no motivation to change or accept responsibility and would be happy collecting welfare all day long. I felt so out of place in that there is no way someone of my intelligence should be in that situation and it was embarrassing having to go there. Even the counselor who visited me and my mother and said "you slip through the cracks. There is no help unless you have a criminal record or are in trouble with the law." This was before I knew of Aspergers. Can't tell you how tempted I was to punch her and say "how about now?" All the help is designed to get 'freeloaders' off the books and nothing more (and make the employment numbers look good) although at least one counselor tried to help me but failed miserably because she had no idea what to do with me.

If I was diagnosed as a child, counselors might have been at least able to point me in areas that could have improved my chances at success but at the same time I also did the "impossible" because I had to. I could not live with myself not working full time and was willing to do what it took to succeed.

Yes; I felt it gave me some closure within my life, and I feel like I am ready to take on whatever journey is next for me.

It sure made a difference, but I am still working to integrate it. 60 years is many layers of experience, and, of course every single incident has to be reevaluated.
(Difficulty generalizing, I suppose).
I would have likde to have been dx´ed in my 20es. It would have saved me a lot of misery from low self esteem and contempt from family and employers.
It is a relief to know, what was wrong and a pain looking at what was. A mixed pleasure, but generally to the positive side.

Jensen - the problem is that 40 years ago, autism was even less well-defined that it is now. And, so far, we are still lacking a clear and universally accepted description of the 'condition'.

Asperger's Syndrome is mostly a matter of opinion, rather than a matter of fact.