In need of advice for getting diagnosed

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Hi. I only recently became aware of Asperger's and was so so so relieved to find out why I am the way I am and I'm not alone. I want to get formally diagnosed soon so I can get some solid validation. I'm an adult BTW. I am very overwhelmed right now by all the information out there, but I'm still trying to learn as much as I can. It can be very confusing too. For instance, and as far as I know, the DSM V doesn't even use the term Asperger's any more.

So my question is, what type of doctor should I make an appointment with to get properly diagnosed? What do I ask for? Are there any tips or tricks to get my insurance to cover it? If you can tell me anything else that I should consider that I'm not thinking about, I would greatly appreciate it.

Hi Robot,
Welcome to WP. I was in your shoes a couple of years ago and just got diagnosed last year. With me I was able to get diagnosed through the Office of Vocational Rehabilitation. What helped me is that I did not have a job and I still don't. But they were able to diagnose me for free because I am unemployed. They are an office that helps unemployed disabled people find work and they do all the diagnostic testing for free. So I was really blessed with that because my insurance will not cover diagnosing adults with ASD at all, not even one penny.

But I have heard that insurances are different and some people find that their insurances cover it at least partially. So the first thing I think you need to see is how much, if any your insurance will cover towards an adult diagnosis. Mine will cover 100% without question, but only if you are between the ages of 2 and 6 years old. Otherwise they cover nothing.

If you can go the OVR route, and you will have to see where they are in your local area and how they work there, but if you can do that, they will provide the diagnostician and all the testing and they are usually very good, well I speaking from my personal experience so I don't know how they are everywhere, but because it is what they do, they tend to be very good at it.

If you can't go the OVR route, if you have a regular doctor, like a GP, I would start there. You will have the best chances with your insurance if you stay within your network. Ask who would be most knowledgeable about diagnosing adults and someone who has gender specific knowledge of High Functioning Autism. And you can still say Asperger's because the word is still used and understood and some doctors even still use it professionally. On the actual diagnosis, it might only say Autism Spectrum Disorder with a code number, or it might say High Functioning Autism/Autism Spectrum Disorder. But either way, the word "Asperger's" is just a word so whether they use it or not is not really important.

From what I have heard, the DSM took it out because the only difference between Asperger's and Autism was the difference in language acquisition so from what I know, they just felt that this was not enough of a difference to merit having a completely separate diagnosis. So don't get hung up on the words.

As far as whether to use a psychiatrist or a psychologist, in my opinion does not matter as long as the person is competent and knowledgeable and able to do a good diagnosis and the diagnosis is official, I don't think it really matters what the letters are behind the person's name. In fact, I read a thread a week or so ago where someone was accessed by Skype by a woman who seems to know what she is doing and it was not expensive. So that is another option you can look into. Of course, that would not give you an actual diagnosis for your medical records but at least it's an option if you can't afford an official diagnosis now.

Now may people have had different experiences from getting diagnosed in a matter of under an hour to having last several days and ranging from just talking to the diagnostician to a full battery of tests and family interviews and all that. Mine was a comprehensive battery of tests, all in one day but took over 7 hours. Also before I went I spent a good time writing pages and pages of notes about my life and childhood and experiences that I was able to put together for the psychologist. They said that was extremely helpful and valuable especially since they could not interview my parents and family members about my childhood. I took my notes from reading Tony Attwood's book, The Complete Guide to Asperger's Syndrome. I read it twice and every time I found something that applied to me, I wrote how it did with experiences from my current life and childhood. I read the book twice, once to read it and the second time to take the notes. I also gave them pictures of myself from the age of two through young teen that showed a consistent typical Aspie stare.

I was glad that it was done that way for me. It was comprehensive, and complete and thorough. Some people actually end up doubting their diagnoses and doing it more than once. I am glad mine was so complete because I know I don't have to doubt it. But taking the notes from the book was really helpful so if you can do that that might help you as well.

And I know that some of tests are for children really, but I found that they were actually challenging and I think they still showed an accurate portrayal of my issues, at least enough for an accurate diagnosis. But I was a pretty obvious case anyway. The person who officially diagnosed me and the very first to tell me I was on the Spectrum both told me I was so obvious that they could see it right away. The diagnostician told me I was so obvious that he did not even have to bother testing me at all but of course he had to do the entire battery of tests for legal reasons. I am lucky that way, even though many people think I am NT because they can't tell, I don't think I am lucky about that part, but I think I am lucky in the sense that with the people who know what they are looking at like the diagnostician and the person who first told me, could tell immediately the very first time they saw me. I think that made my diagnosis easier and I know that with that and all the testing I don't have to ever doubt it.

But see if you can find someone who really knows what they are looking at. Hopefully this helps you.

Thank you for the great advice. I will look for that Attwood book. So far I've just been searching the old interweb. Taking notes seems like a very good idea. I'll try that.

It's a great book. It's very comprehensive. It's geared to help teachers with Aspie students understand them and create better learning environments for them but I just kind of skimmed over the parts that were meant for creating classroom environments. That made it faster reading. But the understanding I got about myself from reading it was amazing. It really made a huge difference for me.

I am so glad to be able to help you. When I was going through the diagnostic process, a couple of members here were super helpful to me helping me step by step with pms. I consider them good friends. Their support was tremendous. And the support on the public part of the forum was wonderful. It made me feel like I was not going through the process alone but that I had a bunch of friends who understood. So I am really happy to extend that to you. And there are many others here who will support you as well. Please keep us posted on how it all goes.