Is it worth pursuing a diagnosis as an adult?

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I started working as an aide at an elementary school two years ago. I felt an immediate connection to our ASD kids. I started to work specifically in our Autism program as a 1:1 aide. I now work in a private preschool as a 1:1 with a little boy with severe autism.

Over the past two years I have read countless books (including Temple Grandin) and done hours of internet and library research. During my pursuits I began to discover that all the things I was reading about applied to my life. I was in denial about it at first, but over time it just became more obvious.

I sincerely think that I am somewhere on the spectrum, may aspergers, not sure. Anyway, I am debating whether there is any point, or any benefits in pursuing an official diagnosis?? I am in my early twenties, currently with a full time job but with hopes of going back to school to finish my degree (in Special Education).

Last edited by jlym on 05 Oct 2012, 10:09 pm, edited 1 time in total.

Really, the decision needs to be up to you. There are advantages in getting accommodations and being able to participate in research, but beyond that, official diagnosis might be self-validating, but there's also the stigma behind having an official diagnosis.

Thanks ... I guess I don't really know that many adults on the spectrum, mostly just kids. So I feel totally lost, not sure what to do. I think the self-validation would definitely be good for me though. So as to not be in denial or always curious.

I think that it is worthwhile to get a diagnosis, eggspecially since you are planning to go to school in the future. You may benefit from having accommodations to function well in school, and you need a diagnosis to get accommodations.

I don't think there is a point in getting a autism diagnoses until the new DSM comes out. You could get diagnosed with AS or PDD-NOS and then end up not being on the spectrum anymore and also because they are merging it all together and calling it all autism. Unless you need it now such as for work or school or for getting a job through voc rehab or for disability, then for for it.

The doctors will mind as well stop diagnosing their patients with PDD-NOS and AS and just diagnose them with autism.

I would. I want a straight answer; just to bring some closure within me.

I think you summed it up well. I'd add though that in case you needed some kind of therapy it would greatly improve understanding. Personally, I value its benefits so that I'm not afraid of the the stigma. I don't disclose it if I don't want to.

I'd be a bit concerned about future job prospects and ease of getting insurance.

I highly value having a diagnosis as an adult. The constant second guessing I had "Do I really have it or not?" drove me nuts after a while. It is very confirming and helpful for me.

I didn't see much value in it, but did it as part of Asperger's related sessions, since, for me, it was more about what I could do about it, than the categorization itself. All the diagnosis really did was give me more comfort in looking at other people's experiences so I could learn more neurotypical behaviors better and faster than I would, otherwise.

And, I'm in my mid-30s.

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I agree that you should take the negatives into high consideration, and also Aspergers may be disappearing as an official diagnosis so we are right back where we started 20 years ago. I agree with Eric that it has the potential (probability) to affect your life in a negative way like it will affect your ability to get jobs... and you sound like you are high functioning enough to hold a normal job so I wouldn't throw the ability to work away or take it for granted.

I can't hold a job so definitly count your blessings and don't do anything that will make it harder for yourself in the future, especially as it is so competitive nowdays with the s**t economy. Also, speaking of the economy for people who can't work and need Social Security.. well we all know it may not be around very much longer. I remember Nazi Germany and how they shipped people with disabilities to concentration camps and killed them so that makes me leery of an official diangosis as well. What if???

Wow I sound so negative.. but I hope this helps and good luck w/ your decision

If you're impaired in the ways outlined, then yes.

After all, you may be experiencing accommodations now and you don't know it, and if something changes and they're no longer there, then...bang, jobless then homeless with it all on you to get government assistance.

If you're getting along fine like everyone else, then you wouldn't be given a diagnosis.

This topic makes me scared. I was told a diagnosis didn't affect anything and the only who would know is yourself. I knew it would have bad consequences. I don't feel like getting a diagnosis and i'm going to tell that next time i'm there as i haven't been diagnosed yet. Also i don't need outside help so basically it's pointless.

I don't know how it works in other countries but in the US you do NOT have to tell your employer or anyone else except that you have to disclose the information to your insurer and in some instances the government. There may be employers that require you to disclose (or background check) that kind of information but it's your choice if you want to work there or not.

If you have group insurance then you will probably see no issue but many people have reported having problems with private insurance where there are not as many laws protecting the individual. So if you ever become self employed or otherwise need private insurance you may have issues.

A diagnosis may prevent you from joining the military.

By HIPAA rules "law enforcement is entitled to your records simply by asserting that you are a suspect or the victim of a crime."

Here a nice link to the ACLU site and government access to medical records
http://www.aclu.org/technology-and-libe ... al-records

If you will benefit from a diagnosis them by all means go for it! None of these things are likely to be an issue to most people but they are out there.

It depends. I would like an official Dx myself to settle the matter but I am apprehensive because of the possible negative consequences and the cost. It could make it harder to find a job or get health insurance in the future if it were in my official medical records. My idea would be to have the official Dx done privately and not let them share the information with my general practitioner. This way, if I were to get insured in the future, I have plausible deniability and can omit it from the questionnaire with little fear that it will ever be discovered.

I am in the same boat: scared. I think the trend I am seeing is "change". The DSM is constantly changing (no more Aspergers?), privacy laws are constantly changing, Social Security is changing (being done away with), the economy is changing (crashing?) and the economy in this particular state and thus the aid my brother who is low functioning is receiving (or not receiving) and the world economy is changing and globalizing along with every aspect of life being globalized including health (WHO will someday define autism and diagnosis?)... the constant change of not being able to keep jobs and the traumatic change I am going through as I am finding out I have AS too.

Anyway I think for my own self that I am not ready to rush out and get a diagnosis until things settle down, if they ever settle down. I know once I have one it is there probably forever whether I like it or not and that is not something I am comfortable rushing into ... not to mention I like to keep my personal business personal and it is no ones business that I have AS except those others I choose to share it with.