Getting an ASD diagnosis as an adult, some tips!

Post Reply New Topic

Personally, I think you should just be as honest as possible. You can use your coping strategies, but explain them in thorough detail. The Psychologist won't care if you're long winded. I personally went in with papers of research, drawings, online tests, everything I've uncovered about the autism spectrum. I wrote down every DSM IV criteria that applied to me and all the ones that didn't as well. I knew I didn't quite have enough criteria for an AS diagnosis (because I have an active imagination) but I wanted to get a professional opinion anyway. I wasn't diagnosed with AS but I was diagnosed with PDD-NOS. That was honestly fine with me. I needed a label to describe what I've been going through all my life but it didn't NEED to be AS. I'm happy with what she said, "You're somwhere on the autistic spectrum, that's for sure. You're just too high functioning to have AS." I have a feeling this is what most of you all, who are worried you won't get a diagnosis, would be diagnosed with.

I don't think I was doctor-bashing.. not across the board, anyway. I mean, you can't get an AS diagnosis from a doctor who doesn't know anything about it, so finding a doctor who is familiar with it and works with adults is a huge part of getting a diagnosis as an adult. A lot of symptoms can also be interpreted in multiple ways, so that the same symptoms could be re-interpreted to be caused by completely different underlying problems. A huge part of my eventual realization that I must be somewhere on the autism spectrum came from ruling out other problems, partially because the treatments would backfire. For example, treating social problems as stemming from social anxiety works on the assumption that if you eliminate the anxiety, the person already has a basic idea of human interactions, how to relate to people, what is appropriate, how to take social cues, how to tell when someone is joking, etc., but that those things are blocked by fear and nervousness. So the goal of treatment is to "trust yourself," eliminate anxiety, etc. But for me, the social problems aren't so much caused by fear as the other way around. I'm afraid in social situations because I tend to screw them up, because I don't know how to recognize intentions, because I have trouble knowing what is appropriate, because I can't relate to people correctly. So giving me confidence without first teaching me how to correctly interact with people will lead to me being inappropriate, getting into trouble when I can't figure out if someone is joking or not, stuff like that.
I'm fairly certain that the importance of finding a professional who understands all that is at least as important, if not more so, than anything that you can say once you've already met them, because a lot of people just don't change their minds about things. You can give information to some people, but others you have to be able to recognize and just avoid. Someone who thinks that autism only occurs in boys, or is synonymous with mental retardation, is not going to diagnose me no matter what I say or do.
Recognizing when people are making things up is something that's really difficult for people on the autism spectrum, but most professionals don't admit when they don't know about something, so the process of looking for a diagnosis kinda hinges on being able to tell if the doctor knows what they're talking about. My psychiatrist seemed to think it was silly that she would know about autism. She said she's not a developmental psychiatrist, that's just not something she works with, so how would she know about it?
In order to get an accurate diagnosis, anybody here really needs to see someone who does know about autism, because if a doctor isn't qualified to diagnose it, they're also really not qualified to rule it out either. I don't think that's doctor-bashing, it's information that's necessary to getting a diagnosis, whether that diagnosis is autism or not. If it seems like it could be autism, a professional would have to be familiar with autism and how it presents in less stereotypical populations not only to diagnose it, but also to diagnose those symptoms as something else.

Nice thread. I thought it might be good to add in these, which are some tips about how to ask about a professional's experience & qualifications. This is excerpted from a post by Jim Sinclair on the AutreatInfo group (Yahoo group):

great post apple in my eye, i didn't think it was doctor-bashing at all, just a good addition! thanks!!

I'm 26, and I don't make eye contact at all, and I know it'll be the same if I live till I'm in my forties (hey, one can't see the future). All of my symptoms are just as profound now as they were when I was a child (except the problems with semantics, but that caught up); some are worst, some are a little better, but they're all there just the same.

It's not due to a lack of learnt behaviour (I've learnt a lot about social interaction in theory), it's due to the pain involved, and the pain isn't worth experiencing.

Though, behavior is going to be someone's level of pain vs how willing & able they are to abuse themselves. Not that I like the idea, but there are the programs that "train" autistic kids to make eye contact, and they do have some "success" in doing that, so behavior can be modified, even if it's not a good idea.

The kid may develop PTSD in the process, and be in constant pain, but s/he might be able to pull it off if punished hard enough. ie If a kid gets yelled at enough to "look at me!", the pain of doing it for a second might seem worth it if it makes the yelling stop.

i think kids with ASDs are more prone to suffer from PTSD stuff anyway. just because of the trauma involved with simple existence. not that i agree that they should suffer from treatment, but it is easy to traumatize kids with ASDs.

Yes!

I was diagnosed as an adult. It went something like this:

*We got an AS dx for our daughter. I read everything I could. I recognized myself and my husband in what I was reading. The curiosity became enough that we sought a formal dx.

*Found a psychologist who said he did dx for adults on the spectrum. I explained why I thought we both (dh and I) were aspies, too. He said we were too high functioning. This is where inside I was screaming BUT I'VE HAD TO ACCOMMODATE TO GET ALONG IN THE WORLD! So I made a point of not looking at him. Sometimes I just CANNOT look people in the eye. Sometimes I can. I made sure I did not. I pointed out that as a child I always looked people in the mouth when they spoke. I thought I was maybe hearing impaired and needed to read lips. And while I do find it easier to know what people are saying by watching thier mouths, I think partly it was a way to not look people in the eyes but still be looking in the general direction of the face.

*In the end both my husband and I were found to have Aspergers.

Here's where it gets interesting: this past week my family was in Hamilton, Ontario to meet with the folks from the Genetics in Autism Studies at McMaster University. I got a meeting with Dr. Marc Woodbury-Smith (who is a really lovely man, btw) and at the end of our meeting he'd changed my dx from AS to PDD-NOS. He also mentioned BAP - Broad Autistic Phenotype, which I'd not heard before and assume is maybe a UK term.

I'd already done some research on him since I knew I would be seeing him. He's authored a number of things, including stuff with Simon Baron-Cohen. (He and Tony Attwood are who comes to mind right away when I think of top docs on AS) My feeling is that he, Dr. Woodbury-Smith, is far more capable of giving an adult a dx, given adults with Aspergers are his specialty.

So while the local psychologist who said he can diagnose adults was fine, it took a true specialist in ASD and *adults* to fine tune the dx. (The psychologist we used originally was a child psychologist who said he was competent with adults.)

That's my story. FOR SURE you need someone who understands that if you've made it to adulthood chances are you've learned to adapt to some extent.