Baby Steps to Diagnosis: Part 2

“I’m seeing a lot of anxiety here.”

Yeah, that’s how you want to start an assessment. But it was true. After close to a year putting these pieces together for myself, it was finally time to present them to an authority on the subject in the hope of validation, which could then lead to some kind of comfort or betterment of my situation.

My initial autism assessment appointment was a virtual one, so video conference/Zoom style. Pros: I could stay home, I only had to be presentable on the top half (so pajama pants still acceptable), and I didn’t have to take time off work. Cons: His view of me was limited to what appeared on screen, and I haaaaate photos and videos of myself, so it took so much effort to not focus on the little image of my face on the screen.

So yes, I was anxious. Then the word “anxiety” made me think of all the people who’ve had their autism misdiagnosed as various anxiety or attention conditions. Which made me more anxious. But he was a professional and I had prepared, so I could lock it down and get through this. His questions were very much what I expected, starting with what led me to seek an assessment. I explained that I’d seen some depictions and discussions of autistics that for the first time didn’t fall into Rain Man territory, and that the more I saw and researched, the more I identified with those on the spectrum.

When he asked me to elaborate and break down some of my traits, I started listing them and was afraid that I was rabbiting on about a few instead of cataloging the many, so I stopped and told him I was starting to blank and that I’d made a list using the DSM-5 as an outline but I didn’t want to just read a list. He laughed a little (not in a mean way) and said, “Go ahead and read your list.” I jumped around on it, trying to pick out the ones I hadn’t mentioned previously, but I still felt like I was rushing and therefore missing things–I should have just started with the list and elaborated when asked.

He asked about my partner, Tom, and how he felt about all of this. Tom has been really supportive and feels like this is making me make sense. It’s improved our communication already, in that we try to speak more clearly with each other because we know sometimes my tone or face doesn’t match the words I’m saying and that’s confusing–and I’m not always going to pick up on his nonverbal cues. Also, we give each other a lot of space, which is very helpful for me as I need my quiet time. And basically, Tom has different strengths from me, so we’re a great team.

Finally, he broke down the rest of the assessment process. I would receive three printed questionnaires and a link to an online one. I was to fill out the online one and a printed one, and then he wanted Tom to do the other two printed ones. We would meet in person a couple of weeks later for some more testing and talking, and then a few weeks later I’d receive a report, which we’d go over in another virtual appointment.

That all took about a half hour, maybe a little more. It was exhausting and I felt like I wasn’t able to convey enough information, but that’s what all the questionnaires and in-person testing are for. This meeting, I suppose, was an introduction to the overall process, so that I would be more comfortable with the rest of it. In that, it was a success.

A note on cost here, since this is such a huge hurdle preventing many people from seeking assessment or diagnosis: I did communicate with my insurance company and made sure this office was considered in-network. My total responsibility for this initial appointment was $0. Nothing fell to deductible, and my normal $20 copay was suspended because we did the appointment virtually, a temporary COVID-era benefit. I imagine the future appointments and testing will be more likely to bear costs, but so far so good. My advice is to contact whatever insurance carrier you have and see how their behavioral health department can help you. Phone calls aren’t always easy to make, but this one could be very beneficial.