When I peruse forums for AS/ASD, I see the subject of diagnosis come up frequently.  People are wondering if they should get one, if it’s worth it, what’s the bother, and so on and so forth.  I figured I would go ahead and be very opinionated on the subject.

My basic thought process is as follows: DIAGNOSIS IS IMPORTANT!

Ok, so that is simplistic.  The reality is more nuanced, and I get that.  First of all, I don’t believe in self-diagnosis.  Most of us are not people who work in the mental health industry who are qualified to diagnose ASD.  Those of us who are should probably still not diagnose themselves, under the basic idea that one should never diagnose oneself, and we are too close to the problem.  So until there is an official diagnosis given by someone qualified to do so, it is impossible to know for certain if we are right.  As I have mentioned before, I suspected that I had AS for 12 years before I got diagnosed.  The entire time, I was very strict with myself about this.  I never knew for certain.  I suspected, with varying degrees of certainty and/or denial, but I never, ever let myself be sure.  In my highly opinionated way, I think everyone should do that.  I could have been wrong.

All that said, diagnosis, especially for people who aren’t children anymore, is kind of a big deal.  I don’t know much about what diagnosing children is like, so I’m not really going to talk about that, except to say that it’s very, very important.  That said, if you are an adult, it’s a bit different.  Getting a diagnosis is time consuming, expensive, and stressful.  Often it requires the involvement of parents or other family members, to lend a perspective on your childhood.  Plus, it’s difficult just to find a place to do it – it took me years and a rather fortuitous turn of events for me to manage even that much.  So in reality, it’s probably only worth going through all that if you actually have some reason to really want to know for sure.  For me, 12 years of suspecting but not being sure on top of a lifetime of being odd in lots of different ways and not knowing why on top of various functional difficulties made it worth it.

I guess the only big thing is that I get a little tweaked when someone who is self-diagnosed says “I have AS.”  But I suppose that’s my issue, as much as I am convinced I am right.  ^_^


Filed under ramble

4 responses to “Diagnosis

  1. Neeneko

    well said ^_^

  2. I get your point, and I feel very much like an imposter for calling myself autistic while I’m not diagnosed yet. However, I find that I do need to feel that conviction within myself to be able to continue fighting to get diagnosed. Maybe it’s wrong of me to think of it as having to convince anyone, that maybe I should just accept their initial response saying I can’t be autistic. Because I taught myself how to make eye contact. Because I have friends. Because I have a job most of the time. Because I’m functioning. But they don’t know at what cost. They don’t know how precariously close to the edge of non-functioning I am. And if I don’t have that conviction of self-diagnosis, I comply and give up and hide. I’m a good girl. Nothing to see here. Don’t worry about me.

    It’s really hard at what point I’m allowed to say that yes, these are professionals with a lot of experience diagnosing ASD, but mostly in children and mostly boys at that. Maybe it is possible that I have more knowledge in the particular niche of adult ASD in women – and specifically how it manifests in me – than they do, even though they have more knowledge about ASD and mental health in general. So I keep on bringing evidence and knowledge and opinions to the diagnosis, even though I’m supposed to let them do the work. Getting a diagnosis is very important to me, I won’t be satisfied with just self-diagnosing, but for all the work I need to put into it I might as well be self-diagnosed. Simply because for the outside world, I don’t seem to have that many problems. I’m just a bit odd. On my best days. I make sure nobody sees me on my worst ones.

    • I can certainly understand finding it important to get a diagnosis. When I was looking into it I was more thinking in terms of “finding out for sure” but it was extremely important to me.

      If you were in the philly/NJ general area I could point you to the person who diagnosed me, as they are experienced in diagnosing adults and had diagnosed women before me as well. Which is to say – I definitely agree that diagnosing and adult is very different from diagnosing a child and diagnosing a woman is very different from diagnosing a man, and I hope you manage to find someone experienced in working with and diagnosing adult women on the spectrum.

      • I’m from the Netherlands, but thanks for the offer! It would be nice to have some sort of register for professionals with (some) experience. Here it’s hard enough finding a place that specialises in autism, never mind autism in adult women. Even the GP who did my referral had to google for a place able to do my diagnosis. 😛