My Experience Getting Diagnosed with Autism

Photo by Jon Tyson on Unsplash

Warning: this may be a bit of a ramble.

If you've read my previous posts about autism, you know that I've self-diagnosed autism and used that for my own personal growth for several years now. In the last year, I became about as certain about my own diagnosis as I could be, but put off seeking an official diagnosis because of the difficulties inherent in seeking one as an autistic woman. 

Then, the perfect practitioner more or less fell into my lap. Neurodivergent herself, with an autistic child and a husband with ADHD, a specialist in adult autism and ADHD - I would be hard-pressed to find a qualified individual with that kind of personal experience locally. She does all her evaluations virtually. It was a two-hour conversation, and she gave me my answer at the end of the appointment. 

"Well, you were right. You're autistic. Welcome to the club!"

Hoooo, boy. Those words are going to stick in my mind.

I was right.

My self-assessment was accurate. My research was trustworthy. I wasn't seeing ghosts in the shadows of my mind; I wasn't exaggerating or over-reacting. The things I've struggled with - everything from feeling like a psychopathic freak in high school, to crying from loneliness at night, to wondering what the heck has to be wrong with me because I'm upset for some un-nameable reason and for some reason I can't talk why can't I talk what is happening to me?! - has an explanation. A reason. It makes sense. It has ever since I made my self-diagnosis, but now I have the official PhD stamp of approval, and that goes an amazingly long way towards my self-confidence. 

It's already going a long way towards my relationship with my mother, as well. She's now able to look at my actions through a new lens. She is able to gain some closure on things I've done that have hurt her because it suddenly has at least a partial explanation in the form of autistic meltdowns. I've been able to have a long, open, honest conversation with her both about my personal experiences with the many facets of autism, and I felt free enough to infodump about ASD to her after the more personal side had been covered. Because, you know, she's my mother, and she's always been the person willing to listen to my monologues no matter what. 

"That's another thing! Autism is often comorbid with other disorders such as generalized anxiety, social anxiety, depression, OCD, ADHD, and ... gastrointestinal issues!"

"Oh, and this is interesting too! Autistic people are wired for patterns, repetition, and routine. I can't walk into a public restroom with those little tiles that are meant to look random without analyzing the floor to find the big tiles that were actually laid down to make it look like a bunch of random tiles."

You get the idea. 

I'm incredibly grateful for how supportive my mother was as soon as she relaxed into the conversation. She asked questions, really sought to understand what I was talking about, and even started referencing little things she noticed about me as a young child that fit with our newfound professionally approved diagnosis. Such as how she was always amazed by how aware of things I was. How as a two-year-old I froze up because I'd picked up on a dog barking two blocks away. How I heard electricity. How I drew hundreds upon hundreds of balloons just filling up sheets of paper. How I had such a fascination with taping things and tying things in knots. How I got into the bathtub and started jumping up and down when she told me to "jump into the bathtub." We laughed pretty hard about a lot of it.

And this is what pushed me to get diagnosed. Sure, self-validation is wonderful, but the truly valuable thing I've gained from this is the ability to have a conversation with my mother about my differences, quirks, and struggles without filtering the terms I use to describe myself. Without having to clarify what I mean because I'm skirting around the term "overstimulated" or trying to cover up that the real reason I don't want to commit to watching a movie with her is because I already have two menial things "on the schedule" for the day and I'm already stressed about getting those done even though logically I have plenty of time. 

I wanted her to understand. I wanted to enable us to speak the same language about this again. I wanted her to be willing to just listen without having to question whether my perspective on it was inaccurate or not. 

It's a huge weight relieved, to have that hesitation and uncertainty removed. 

Quite frankly, I'm still a little bit shocked over the whole thing. I was reasonably certain of my own assessment, but I was trying to prepare myself for the slight possibility that the psychologist would tell me I was wrong. I know typical evaluations take multiple days of various forms of tests and examinations and conversations, cost thousands of dollars, have massive waiting lists, and often don't give you the results until weeks or months later. 

From the time I heard of this psychologist to my diagnosis today, it wasn't any longer than two weeks, and it was less than a third of the typical cost. I didn't struggle with having to justify my symptoms to a doctor who is used to "pediatric boys flapping their hands" as my psychologist described the stereotypical autistic. I didn't have to offer explanations for why yes, I'm capable of making some eye contact. I didn't have to explain how it's possible for me to be married and still be autistic. I didn't have to battle for validity because I'm a woman and "autism is a male disorder." I didn't undergo the rigamarole of examinations and tests only to be told that I can't be autistic because I would have been diagnosed as a child. I've heard all of these things happening to others seeking a diagnosis in the more typical channels, and believe me, I was pretty terrified of confronting these issues.

There's something of God's timing here. I think that goes without saying, since He does orchestrate every minutae of the universe, including every moment of my life. Speaking in human terms, though? This wasn't going to happen for me without a push. I was too scared, and there were too many perceived obstacles for intangible gain to make it worth my while. I heard about this psychologist from a reddit user who had nothing but praise for her diagnosis experience. Two weeks later here I am, diagnosed, having excellent fulfilling conversations with my mom in a way I haven't been able to up until this point. It's amazing! I'm grateful that God placed this here in my life. It wasn't something I necessarily needed, but it is without a doubt beneficial, and I just can't really believe how easy it was, in the end. He cleared the way for me. 

Going forward, I simply plan to use my knowledge as I already have been: for self-awareness and through that, self-improvement. The only thing that I really see changing is how I talk about my autism. My confidence in claiming it has no reason to waver, now. I feel validated in using psychological terminology for my struggles, which means I'm better able to educate those around me and communicate more clearly and concisely. 

Hopefully, through all this, I'll also be able to dispel a lot of the ignorance surrounding autism within my little sphere of influence as well. If someone can get to know me and then finds out I'm autistic, I'll enjoy the little bit of shock they may feel, because that will lead to questions which I am actually, somehow, remarkably, better qualified to answer than some practicing psychologists out there. (I really don't say that to be snooty - I consider that a sad truth, and one that is in desperate need of reparation in the mental health world). I want people to understand that autism doesn't "look" a certain way. It's an incredibly multi-faceted condition that affects so much more than verbal skills and hand-flapping. Autism means you are wired differently from what is considered "normal." Sometimes those differences can be debilitating, and sometimes that debilitation is nigh-constant. In many cases, though, autism is only disabling sometimes, under certain circumstances. And! Every person with autism presents differently. It is unique and varied and causes distinct weaknesses and lends distinct strengths! 

As my mother said, "I still don't think there's something wrong with you."

I used to think that there was something wrong with me. Now I just realize I'm different. 

And that's okay.