Baby Steps to Diagnosis: Part 1

These are all rolling a little late, since it’s been tough to write and edit and publish. Big happenings on the diagnosis front, along with the rest of life, so finding moments of calm has been a bit tricky.

I have an appointment for my autism assessment! Two, actually, with a third one TBD. It has only taken ten months of phone calls and emails to three different offices. I’m feeling a lot of things, and they’re really hard to identify, but one is definitely somewhere between satisfaction and relief.

After being put on the mysterious wait list at Rush’s AARTS Center–mysterious because when I called to check in after a few months, they couldn’t actually confirm I was on the wait list because someone else had that part of the list–I’d called Thomson Memory & Attention, which was enough of an experience itself to turn me off. Both of those offices have voicemails from me they’ve yet to return, which is unprofessional for any business, let alone a medical professional. So I called my insurance company for assistance.

My insurance company (BCBS of Illinois) has a behavioral health department, and the person I spoke with was helpful, offering a couple of in-network options. One of them was out in the suburbs and one was here in the city, so I checked out their website. It’s LifePath Therapy Associates, which sounds a little goofy, but their site had a page dedicated to ASD Assessment and they address the issues that allow people to have gone undiagnosed into adulthood. That’s pretty key to my situation, that the office is prepared to assess adults and take masking into account.

Of course, the first few contacts were unfruitful. I’d used the contact form on their website, which for some reason didn’t submit. I called a couple of days later and they were very apologetic. Their appointment booking was frozen at the moment, but they asked me to call back after June 1 to book mid-August or September. I did and they said to call back on June 15. Very frustrated, I explained to them that I was already told to call back and that I had been at this for nine-plus months. Maybe they didn’t realize how I had to psych myself up for each call–this wasn’t easy. They were really nice about it and took my email address, so we could have a running conversation there and have record of it. And within a few minutes of hanging up, I received an email.

So two weeks later, on the 15th, even before 9:00 a.m., I replied to the email and started psyching myself up to call later in the day if I didn’t get a response. But I received an email pretty fast. We did some back-and-forthing and they said they’d call me at 4:00 p.m. to do an intake call. Perfect. I had time to prepare myself for the call, and it was finally, really happening.

At 4:00, I got the call and they asked me about what prompted me to explore the diagnosis process. Apparently, I said the right things (from childhood I was the shy, gifted, “princess and the pea” performer who couldn’t do eye contact or small talk but loved counting), and we set up an initial virtual (Zoom-style) appointment for next Wednesday. There will be a bunch of questionnaires to fill out, an in-person appointment in a couple of weeks, and then a final, results appointment a couple of weeks after that.

I went through the initial intake/admin forms, and one covered insurance and payment info, breaking down the maximum out-of-pocket cost if you did not have insurance: The entire diagnosis process would not exceed $1200. Since I’d been sort of budgeting for about $1000, I’ve relaxed a little with the assumption that my insurance would cover at least some of it. It’s a lot of money, and a few years ago there’d be no way I could have managed it, so no matter what happens, I’m grateful for the timing of my discovery. I see it a lot online, autistic advocates stressing that diagnosis is a privilege. It really is, so we do need to accept self-discovery/-diagnosis. I do still very much want to nail down an official diagnosis for myself; I see the value in it and would like for everyone to have access to the process. I don’t yet know exactly how a diagnosis will help me, but that’s how a journey works–you don’t always get to see around the bend.

As for my journey, I’ll be back to fill you in on my virtual appointment and questionnaires.