*Russell Watson singing* It’s been a long road…

We’re poppin’ big bottles because I finally got my official diagnosis! I am on the books as autistic, friends. It still feels unreal. I have to keep reminding myself that I’m done, that the struggle is over and I no longer have to stave off meltdowns, keep my hands from shaking and watch my words while I’m talking to doctors. So, let’s tally up what got me here, shall we?

My official journey started in January of this year, that’s when I started the ball rolling on getting a therapist and a psychiatrist that could hopefully help me get a diagnosis. I started seeing my therapist in February after a lengthy process of finding a place that took my insurance and was easy for me to get to. I had my first unsuccessful conversation with my psychiatrist about pursuing an autism diagnosis in March, which led to her telling me to “call my insurance” to find a neuropsych because there was nothing she could do for me. After searching around for a while, my partner found someone that took my insurance and I went in for my initial interview in May. I finished my testing at the end of that month and was called in for my feedback session at the end of June. After what I felt was a wrong diagnosis of NVLD instead of autism, I left notes with both neuropsychs and met with them again yesterday where I was finally actually diagnosed with autism.

So, seven months of struggle paid off, but was it worth it? The truth is, I don’t know. I want to say yes, that I’m sure that I just paved the road in gold for my future but I haven’t even had time to fully absorb this aside from the fact that I felt a sense of euphoria coming out of the office yesterday afternoon knowing that I fought for what I thought was right, and what I knew to be true and came out of it victorious. My body still has one foot in crisis mode. I have no idea how long it’s going to take me to fully recover and decompress. I just know that I’m not there yet, and that’s okay. I went through an extremely demanding process and it’s okay to not be able to snap back immediately. At some point I’ll sit down and write a lengthier recap of everything I went through, but for now this’ll do.

The Feedback Session: Part One

I had my feedback session with the two neuropsychs that have been working on diagnosing me with autism yesterday. Walking in I had this feeling that they weren’t gonna diagnose me and I was right. They diagnosed me with non-verbal learning disability aka NVLD. When I was sitting there, and the neuropsych that tested me (we’ll call her L) said the words “you’re not on the spectrum” my entire world stopped. It felt like an out of body experience. In the space of a few seconds I felt like the earth had toppled off it’s axis. It didn’t make sense. I had spent two years researching, about a year being comfortable with my self diagnosis and participating in the autistic community and here they were telling me that I was wrong. Just as quickly as I felt my world collapsing, I (metaphorically) leapt out of my chair and shouted no.

I pushed back. I felt this sudden surge of belief that they were wrong and I expressed it, which isn’t really like me. I’m kind of a terrible self advocate due to social anxiety, past abuse, gaslighting and a heaping spoonful of PTSD. But I spoke up this time. I had the presence of mind to stick my notebook containing about fourteen handwritten pages about why I suspect I’m on the spectrum into my bag the night before, so I was well prepared. She wasn’t in the room with me, but I also called my mom out for what I believe she did at the parental interview. She lied. At best the information she gave to the doctors was inconclusive, at worst it was bold face lying because she doesn’t want me to have this diagnosis. She sees being autistic as something “wrong” not different, and she would sabotage my future so that she can save face. I explained to L and M (We’re gonna call the other neuropsych M, by the way) that I predicted this would happen. On my second day of testing I told L that my mother had a very public freak out about me being autistic before we even left the building after my first day of testing.

Continue reading “The Feedback Session: Part One”

The reckoning is upon me. (Or will be soon.)

So I’ve tallied it up and from the beginning of my process of seeking a diagnosis for autism, and I’ve been at this for about six months. In January of this year, I went to a local counseling center looking for a therapist and a psychiatrist that could help me find the path to a paper diagnosis. I didn’t find an actual neuropsych and get an appointment until April 27th, and I didn’t actually meet with that doctor until May 1st. ¬†That was the preliminary interview and after that I had to wait and see if my insurance would cover my testing. Luckily, they did. The first half of the actual testing was on May 18th and the second half was May 22nd. My feedback session where they’re gonna give me my scores and (hopefully) a diagnosis will be on June 29th. I want to be really clear about the time frame here so that people that are anti-self diagnosis or just don’t understand why an autistic person would choose self diagnosis over a clinical diagnosis can see the amount of energy and waiting this takes. It’s a spoon suck, especially if like me, you are disabled in other ways in addition to being autistic.

The system just isn’t set up to support adults seeking a diagnosis. It’s lengthy, unwieldy, and expensive if you’re not lucky enough to have your insurance cover the testing. I’ve seen figures for paying out of pocket around the two thousand dollar range. On top of all that, there’s the emotional turmoil that comes with going through all of this stuff. I’m severely anxious and the combo of that, having to make phone calls and go to appointments was just extra taxing. I was constantly second guessing myself after my testing. I was embarrassed that I didn’t know simple stuff like what temperature water boiled at and that I messed up questions that I knew the answer to (like that it takes eight minutes for sunlight to reach the earth, not six like I said).

Continue reading “The reckoning is upon me. (Or will be soon.)”

The Reason I Jump: A Review

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with AutismThe Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida
My rating: 3 of 5 stars

First of all, I’m writing this review as an autistic adult, so jot that down. I enjoyed The Reason I Jump overall. As an autistic person of color, I enjoy hearing the stories of other autistic people of color because we’re often not as visible in media and literature. There were even a couple of things that Naoki Higashida mentioned that I didn’t know were “autistic things” that I realize we have in common. It was comforting to read those things and have the aha moment of oh, that’s why I do that thing, and this thing is something common to autistic people.

What I did not like about this book was the introduction, written by a non-autistic parent of autistic children. He framed the book as a useful resource for non-autistic parents and I agree that it’s generally a good idea for those parents to listen to and actively seek out the stories of autistic people so they can understand their children better. But I felt like the book was framed as kind of a “one size fits all” manual. And honestly, there’s no substitute for getting to know your child yourself. No magical text exists that will “decode” the behavior or interests of autistic people and I don’t like to see books by autistic people marketed in that way. On top of that, there are a lot of things Higashida wrote about in his book that I disagree with, honestly. And other things that I can’t relate to. No one autistic person is the single voice for the community, or for an allistic parent’s autistic child. And of course, just like neurotypical people, all autistic people are different and express our traits in different ways.

I was also not pleased with the use of the phrase “special needs” throughout the book by Higashida himself and by the allistic author of the introduction. I’m giving Higashida a break on this one because that phrase might be something the translators heavily favor (the book was originally written in Japanese and translated to English) and he was only thirteen at the time of the writing of the book so his beliefs about his needs/the needs of autistic people in general being “special” might have changed by now. The introduction also includes an uncensored use of the “r” slur that’s commonly used against intellectually and/or developmentally disabled people. If that use of language can be triggering for you, I would suggest skipping the intro completely.

It was a quick, easy read and I’m happy that it exists. In addition to not hearing from very many autistic people of color, I find that I don’t see a lot of media or literature about autistic people coming from anywhere that isn’t Europe or America. It’s nice to see more global representation.

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(To the tune of the Paula Cole song) Where have all my spoons gone?

So, I’ve been neglecting this blog a lot lately and that’s primarily because I’ve been pursuing a paper diagnosis for autism. So far, the process has taken two months, a lot of phone calls and even more spoons. I’m at the end of the line right now. I had my initial meeting with my neuropsych, two days of testing, my mom did the interview and now I’m just waiting for my scores to come back and my feedback session.

I decided to get a paper diagnosis for a few reasons. First, let me say that this diagnosis isn’t gonna change anything for me as far as what I think about myself. It doesn’t matter what they say, I’m autistic, nothing can change that. I’m really confident in my self diagnosis (it took me two years to get to that point) and I’m confident in my ability to recognize autistic traits in other people (to the point where I suggested a friend get diagnosed and surprise! She’s autistic). I wanted this for reasons outside of myself. I wanted it to show my parents that I am different, and there are things I can’t do because of that difference. I’m not sure if that will step down their emotional abuse, but here’s hoping. I also decided to pursue it for my peace of mind in terms of being doubted by people and having proof. It’s scary to be self diagnosed, I hate having to defend myself or doubting myself when I see other people being attacked for their self diagnosis. I think lastly, I wanted to pursue this in case I decided to go back to school. I’m gonna need accommodations or I’m not gonna make it very far. I’ve already dropped out of college once due to being overwhelmed and burning out, I don’t wanna do it again.

At some point, I’m gonna get into all the details of my testing and diagnosis process, I think I need some more spoons before I can talk about it fully. Either that, or I need for it to be over because thinking about it a lot does trigger my anxiety. In any case, I’m back and you’ll be hearing from me right here, every Friday.

So, more on how my parents never cared about me because I decided I wasn’t done.

My parents also had almost no¬†involvement in my dating life. I didn’t really start dating until I was eighteen years old. I had three sort of cutesy, puppy love relationships before that, though. My parents only found out about one of those, when I was in sixth grade. My mom used to go through my stuff and she found some silly little love note to this boy I liked. The punishment was severe. I wasn’t allowed to use the phone or see my friends outside of school for a month. She never asked me any questions about my relationship with this boy. She never asked if we kissed or held hands. If she had, she would have found out that we were both so shy that all we managed to do was pass notes to each other.

I never got “the talk” from my parents. Sex was never addressed in any capacity, I learned everything I knew about it from medical textbooks that my grandmother gave me when I was in the fourth and fifth grade. I didn’t get any kind of sex education in elementary, middle or high school either, so it was my responsibility to learn about that on my own. That initiative probably saved my life in a lot of ways, but of course left me ill prepared since all I knew were the clinical applications. Without those books though, I wouldn’t have known the mechanics of pregnancy or disease and how to protect myself from them. It’s a miracle that I never got sick or got pregnant without being aware of it. My parents never talked to me about dating either. I learned everything I knew about that from television and magazines. My friends didn’t even talk to me about dating. I have no idea if they were doing it when we were in high school or middle school. I don’t know if they were uninterested in it, not allowed, or just never brought it up with me specifically.

Continue reading “So, more on how my parents never cared about me because I decided I wasn’t done.”