A Bit of Limbo: Between Self-Assessment and Professional Diagnosis

It’s been about a month and a half since I took my first neurodiversity quiz and began researching autism, particularly in women. In one sense, I’m very comfortable with the “autism” label, like if a professional told me I am autistic with a side of OCD, I wouldn’t be upset. But at the same time, I don’t feel comfortable at all saying, “I have autism with a side of OCD,” because a professional has not yet told me that.

The people I have told about my self-assessment and research have been 100% supportive–not a single person has pushed back or laughed it off. That says a lot about my friends and family, that they’re kind and respectful. But that also says to me that whatever people may know about the autism spectrum, they don’t see a conflict in this assessment. Instead, people have been excited for me to have an explanation for things I’ve dealt with throughout my life; they’ve seen it as a comfort. And yes, some have asked for any references I’ve used because they wonder if they themselves fall somewhere on the spectrum.

But that still leaves me in this space without a formal diagnosis. I don’t see a therapist of any kind, so there’s no one to bounce this idea off of, and even figuring out what kind of doctor to see for a diagnosis is a puzzle. Should any psychiatrist or psychologist be able to help me? Or is this what a neuropsychologist is for? The internet is a very imprecise tool here. I toggled between my insurance website and the Rush University Medical Center site to hone in on what I needed. The insurance company’s physician directory pointed to many offices that seemed to serve children, and I want to see someone who’s comfortable diagnosing an adult who’s been masking her traits for decades upon decades. Very long and boring story short, I found the AARTS Center at Rush and I think it’s gonna work out for me–and may not be completely out of pocket.

It took me a few days to gather my nerve to call for an appointment. I was not as comfortable or knowledgeable as I usually am when I call a specialist, so walking into a phone call–itself a daunting exercise–in an already vulnerable position was pretty tough. But I did it. And in a rather anticlimactic fashion, I was met with a recording. The office was still completely closed due to COVID. I could have left a message for a callback, but what good would that have done? I hung up and exhaled and was at least proud of myself for trying.

A couple of days later I changed my mind and decided to leave a message–maybe I could schedule an appointment or confirm it was the right group of doctors for me. I prepped myself for the message, including writing my phone number down because I always forget it when talking on the phone, and then surprise–someone answered! He explained that they had just reopened and there was a 6- to 9-month waiting list for assessment appointments. So I gave him my name and number, and I guess I’ll just wait a few months before checking in. I’m sure there are people who are in greater need of diagnosis, but I just would feel so much better if I could take ownership of my labels.

Why is it so important to me? I think mostly because I don’t want to feel like I’m appropriating a label. I’d hate to think I was using a term loosely, like if someone was being mood-swingy and they said, “I’m so bipolar.” No, that’s a different thing and it’s disrespectful to both the condition and the people who live with it. I don’t want to disrespect people who struggle on a daily basis or in different, more severe ways than I do. I hate the term “high functioning,” so I guess I’ll say I’m coping, trained in masking, without need for much accommodation or services. My expressed traits are very mild–over the years I’ve turned my visible traits like finger tapping into cheek biting, toe flexing, and staring into my eyelids really hard. Another perk of a diagnosis is that it would explain so much about me and I think it would comfort not only myself but my close friends and family, those who maybe struggle at times with getting a read on me or having to witness me withdrawing or freaking out “over nothing.”

I suppose anytime the brain is involved, it complicates matters. It’s an invisible condition, like an electrical problem rather than a mechanical one. So for my rheumatoid arthritis, my primary physician looked at my joints and sent me to a rheumatologist, who confirmed through x-rays and blood tests that I have rheumatoid arthritis. Now I can say very easily what my condition is, how I’m treating it, and how it limits me. I want that kind of clarity for my weird brain now, please. Until then, when I talk about what’s going on, I’m very upfront with the fact that I’m self-assessing, and I’m trying to leave space for myself in the event that the pros don’t agree with that. I’ll be surprised, because my traits go back as far as I can remember (and before that, thanks to input from Mom), and when I read, listen to, or watch content from women with autism, I feel like I’m looking in a mirror. But it’s possible my particular wiring has a different label.

Of course for that and other reasons, I’m nervous about the assessment process, whenever I do get in to see a specialist. What even happens?! I found this episode of Spectrumly Speaking, Demystifying Diagnosis to be so helpful. A doctor who does this all day every day talks us through her process, and an autistic person talks about her experience being assessed. They offer warnings about a too-quick assessment and help prepare you for your responsibilities in the process. It’s a lot of work, and it’s not easy work, but it sure does sound worth it.

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