Dear Aspie: Should I Get a Diagnosis?

Dear Aspie:
“I only recently stumbled on this website and I’ve found it really interesting. I’m 24 years old, and I was wondering what steps I would take if I thought I had Asperger’s. Also, if I did have it and I was diagnosed, would it even be beneficial to know?”

–ip_outcast

Read on for GroovyDruid’s response!
Dear Aspie:
“I only recently stumbled on this website and I’ve found it really interesting. I’m 24 years old, and I was wondering what steps I would take if I thought I had Asperger’s. Also, if I did have it and I was diagnosed, would it even be beneficial to know?”

–ip_outcast

[NOTE: ip_outcast lives in the London-Surrey area, and would be grateful to any WrongPlanet members who would PM him information on recommended diagnosis resources in the area. Thanks!]

Most aspies who seek diagnosis as adults struggle with these questions: how do I get diagnosed, and is it worthwhile or even wise?

It is hard to generalize, but I will put it this way: I’ve never heard anyone regret getting a diagnosis. Many aspies find that a diagnosis helps them build agreement with people, to explain their peculiarities in a way the public can comprehend. Adults who get a diagnosis often describe an unexpected relief after a diagnosis. A diagnosis gives closure to search that, for many, has been ongoing ever since they could remember. I was diagnosed as an adult, and I found it helped me a great deal. I’m glad I got an official diagnosis.

In addition to the personal closure, a diagnosis has a more serious side to it: it gives you legal status as socially and cognitively disabled. Some aspies don’t feel they need this status. Others do. For example, many aspies would find university untenable without their special dispensations to have more time on tests, receive help with note-taking, and complete alternative projects in place of ones they find impossibly difficult. Without an official diagnosis, you might as well whistle in the wind as ask the university for these accommodations. Unless you are certified, they couldn’t care less.

The same goes for the workplace. Some aspies need no accommodation and don’t even tell anyone they have AS, while others find that they can only work in certain aspects of a business, usually away from frequent personal interaction. With a diagnosis, you have far more leverage to negotiate accommodations in the workplace. If you inform your employer that you have a disability and ask for accommodation, and the employer fires you or refuses to accommodate your request, you have grounds for a damaging and embarrassing lawsuit. Without an official diagnosis, the employer simply says that the supposedly-AS employee wasn’t helpful with customers, and that’s that. Getting a diagnosis after being fired will work, but it packs much less of a punch, as you can probably imagine.

Medical doctors, psychologists, and psychiatrists render diagnoses of AS in the United States. The patient goes in for an evaluation—usually accompanied by a parent to fill in childhood history—and afterwards receives a written report containing the offered diagnosis. The interview usually takes from two to four hours. The evaluating professional covers childhood and adult history, family and friendships, social and personal habits, subjective feelings, and often gives an abbreviated or full IQ test.

I do not know equivalent procedure in the UK, where you reside, but I suspect it’s the same, or nearly so. Wherever you are, though, I can offer you one golden piece of advice: seek a diagnosis from a health profession who deals regularly with patients on the autism spectrum. First, a psychologist or doctor who deals with aspies regularly will know how to make you feel comfortable, and that comfort makes a big difference when you are in the vulnerable position of having your entire life evaluated and possibly labeled. More important, though, I have heard one horror story after another of aspies who went into their local head shrinker—or two, or three—and received several wrong diagnoses before finally going to someone who knew what they were doing. This can be frustrating and traumatic, since a possible diagnosis of autism is hard in itself. But when an ignorant mental health professional follows up with a blithe diagnosis of this-is-all-in-your-head-itis and mild social anxiety, it can knock you flat. Don’t do that to yourself. Go to a pro.

I hope that some of our members here on WrongPlanet can point you toward a good professional in your area. In the absence of that, you might contact the Nation Autistic Society, a UK-based group, and ask for a referral: http://www.autism.org.uk/

Best of luck, whichever way you decide to go!

Send your questions to “Dear Aspie”! Just PM your question to GroovyDruid or send an e-mail to [email protected] Questions of a personal nature may be submitted anonymously, though printing a user name is preferred. “Dear Aspie” reserves the privilege of editing for spelling and clarity. Thanks for your submissions!

7 thoughts on “Dear Aspie: Should I Get a Diagnosis?”

    Comments

    • Hellen Nichols on March 18, 2015

      I’m 17, everyone around me, friends, family, classmates always found me weird, I read about the Syndrome Aspeger and have all the features, but it’s still better to have an official diagnosis, we should talk to proficionais even to have the municipalities to do and look for, how to explain to everyone the reason for our behavior “flashy” …

    • Marduk1965 on May 21, 2015

      Thank you so much for this. This is the most helpful thing I have seen on this ever. I have been asking around and people just tell me go see a doctor. I saw a psychologist last year for four visits and then he tells me he doesn’t have any way to test me for Autism. Jerk. That was expensive. I don’t know if I’m on the spectrum but I have so many of the traits that it makes it hard for me to navigate the system and get a diagnosis. This has caused me a lot of emotional pain and I have had no help to find the right doctor. I may not need help now.

      Thank you so incredibly much.

    • Chickadeesingingonthewrongplanet on February 10, 2016

      Marduk, are you in the UK or elsewhere? In the UK there’s a legal requirement about the pathway to diagnosis. GPs should refer people who make a case for it on to appropriate specialists.

      There’s information about that here: http://www.autism.org.uk/About/Diagnosis/Adults/process

      You could print out a ASD test from the web, fill it in and bring it along if you feel as if you might find it hard to explain things enough.
      There is actually a large number of diagnostic tools for adults, but it seems they have to be administered by qualified experienced practitioners.
      If you aren’t in the UK, then it sounds as if you might need to do much more advocating for yourself, but maybe people from your country here will post.

    • Explorer on March 3, 2016

      I’m an older woman with Aspergers but don’t have an official diagnosis. I’m pondering the same question you are. On the one hand, I’d like to have it confirmed, but on the other, I’ve lived this long with it, and probably have acquired most of the coping skills I need. If I were younger, I’d definitely go for an official diagnosis because I’d probably learn a lot that would be useful.

    • balaam on March 12, 2016

      I would like a diagnosis. A psychologist has recommended I get a dignosis, but there is none to be had in this health authority (Calderdale and Huddersfield in the UK) and no funding for out of area funding.

      Is there a way I can get a private diagnosis, and how much would it cost?

    • brookviv on May 9, 2016

      I’m 23 and considering seeing a psychiatrist regarding possible AS. The more I read about it and talk to aspies the more it seems to fit and even if I’m not on the spectrum it’s a relief to talk to people who understand a lot of my struggles. Getting an accurate diagnosis would be a literal lifesaver for me. It would give me a path to recovery and a way to communicate with people close to me.

      Best of luck to all of you seeking answers!

    • ursaerigor on September 8, 2016

      I need to be diagnosed.
      I have Russian citizenship and right now am studying abroad in Israel. It’s vital to get the diagnosis before I’m kicked out of the university. I asked my advisor but she has no clue what should I do and where should I go with this. She said I need a psychologist who speaks Russian, but I highly doubt there are any Russian-speaking specialists who work with anything besides correction. I also doubt that I really need a Russian-speaking specialist since I’m fluent enough in English and it doesn’t seem to be a diagnostic criteria, but that’s what my advisor said. I also doubt it’s a psychologist and not psychiatrist. I’m confused beyond bearable so I registered in this community and wrote this message.

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alex

By alex
February 21, 2006

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