Ten Flipping Years (Plus Change)

I was finally diagnosed/screened for autism in back in 2020, after ten years of fighting with my SMI (seriously mentally ill) care providers to get a referral. I was initially diagnosed with BiPolar Disorder. (Which I may or may not have. Anxiety/Depression being comorbid to other autistic traits and deficits is Very Much A Thing. So it’s hard to say if the BiPolar assessment is accurate.)

Part of the problem was that the state I live in (Arizona) has “developmental” disability services on a separate track from “mental health” disability services, and never the twain shall meet, apparently. Another part of the problem (and why it took so long) is that the fight was extremely emotionally and mentally taxing so there would be long periods where I had to either give up for a while or have a meltdown. Yet another problem is that I was apparently deeply confusing in my continual requests for assistance with something that the SMI clinic/providers did not in any way shape or form deal with.

It took me ten years to get the referral because it took that long to convince them to give me the referral because they refused to believe me when I attempted to advocate for myself. I would come to meetings with the prescribing nurse with lists and descriptions of the symptoms I was experiencing and was continuously told that “we don’t do developmental disability services.” When I asked for a referral, I was denied.

I tried getting assistance by going to my PCP, but was directed back to my SMI clinic–who would refuse to listen to me. (I have been listed by my SMI clinic as “uncooperative and obstructive.” I feel I was not the one being uncooperative and obstructive here but that’s me.) This repeated several time until I was finally able to get my referral.

And with some assistance from my therapist at the time (I was going to therapy at a place that was different from my SMI clinic because the clinic did not provide counseling services. Which is another source for exasperation) I was finally able to get screened/diagnosed for autism, which it turns out, I actually do have. 

I thought this would help get me services.

It did not. The SMI clinic conveniently lost the diagnosis that the autism clinic faxed to them. They never recorded it in their records! They claimed that the only thing they still had from the clinic was the original referral and I couldn’t ask them to talk to my caseworker because the caseworker I had at the time wasn’t there anymore!

So, still not quite clued in on how absolutely separate the two tracks (developmental and behavioral) were kept, I tried to transfer completely over to to the Autism clinic. I was…not entirely able to to this, though I was primarily getting services from the autism clinic. (A good thing about the autism clinic is that it does have counseling.) I found this out when my insurance, under the impression that I used the behavioral health clinic’s PCP, switched PCPs on me when that PCP left the company.

I was not happy about this.

I initially made an attempt to get services from the Division of Developmental Disabilities but I apparently don’t qualify. I apparently don’t qualify it should be clear, because I was diagnosed as an adult, instead of 40+ years ago as a child. (Never mind that I was just as autistic spectrum then as I am now. Never mind that in the 70s it was generally assumed that autism was mostly diagnosed in boys.) According to DDD, I didn’t have any symptoms until I was an adult? Or something? Because autism is definitely like the flue and it’s something you can suddenly acquire? I guess?

At the time of writing this, the current project is getting my SMI clinic to transfer me to the same network that my autism clinic is in. The theory here is that hopefully diagnostic information/documents will be better exchanged between clinics in the same network. We will see if that’s the case!