an autistic trip through the design minefield

As recently as 2020, I still believed and behaved as if all human beings would act with morality, compassion, and fairness. Maybe that’s why I fell for cult-like groups so many times in my earlier years. Somehow my Autism seemed to put up blinders when I should have seen red flags.

I entered the design field in 1978. Back in the day when architects still saw themselves as heroes. And when they still drew. Drawing was important to me – the feel of the instrument in my hand, the pressure, and the consistency of the pastel, charcoal, graphite, or ink. It still sings to my heart.

There was a romantic side to design, too. Beaux Arts, watercolor renderings, custom elements added to majestic buildings… But I digress.

I recognized years ago that, despite any heroic self-visualizations, anyone who wishes to design environments must, as a prerequisite, have a generous dose of ego. How could you presume to design environments for others if you didn’t believe you had at least a few god-like qualities?

I entered a design profession (architecture) because I wanted to create beautiful, comfortable, soothing environments for people. And because, in my parents’ view, it was the most likely secure profession for a girl who really just wanted to draw. And, I think it was unspoken, a girl who was not likely to find a husband and therefore would need to support herself. We were fresh out of the Sixties, after all. I was weird, and I knew it.

Over the years I noticed another pattern within the practice of architecture: to be a successful, prominent architect, you had to have at least one of three qualities: lots of money, good connections, or ruthless ambition. I didn’t have any of those. But I also didn’t mind tightening up loose concepts or cleaning up messes generated by others – as long as my employers acknowledged, on some level, that I was contributing a valuable service.

In the course of being the one who fixed and finished, I learned many lessons on how not to do things. And I developed an uncanny knack for sensing impending “problems.” Architects, engineers, project managers, and constructors picked up on this and became my greatest allies. To fellow designers, I often became a foe to be toppled. At least, in hindsight, it sure looks that way. As hard as it is for my idealistic mind to accept that, and as much as my socially awkward mind fears retribution for saying what I think I observe, logic points to that conclusion.

By the time I reached my 50’s, I had ridden so many ups and downs that I concluded I would probably need to work until I was well into my 80’s or couldn’t see the computer screen anymore. I resigned myself to this fate, but fate took an unexpected turn.

You see, I didn’t know I was Autistic; I didn’t know I was masking, and I thought my energy would continue to be inexhaustible.

The week came when I lost my job and my sh*t, after beginning to lose my mind every morning while preparing for my team’s work-from-home calls. Given my history of mental health issues, I knew I was headed down a dark, lonely spiral, so I called my insurance company and arranged to check myself into a psych ward. Yep, that really is the best term for it, for me at least. Let’s not mince words. I needed some high-octane help to get myself put back together.

Fortunately, it was a fantastic psych ward (I’ve been in the worst, as in One Flew Over The Cuckoo’s Nest kind of worst), with a fair share of helpful, caring staff, nurses, clinicians, and doctors (I really do recommend it if you’ve ever felt you needed it but hesitated). Near the end of my week there, I overheard a social worker talking about Disability applications, and my ears perked up. I made some inquiries, and after hearing fifty-kajillion times that it usually takes years (which it does), I applied anyway. Not quite sure how that slipped past the stigma voice in my Autie brain…

My disclaimer: SSA has a long list of “issues” that might qualify one for disability benefits. There are only a couple (like cancer and blindness) with which one can immediately receive approval for benefits. I had nine of those issues, with plenty of documentation on all of them. Still, I got rejected in the first round and it did take almost two years for me (and my attorney) to ride out the second phase and receive benefits.

Here’s the great beauty of it all. Now that I’m on Disability, I can write about my experiences without fear of losing a job or connections. So I hope that I can help others who may struggle.

If you suspect you might have Autism and are trying to keep up in the professional world, please educate yourself and do whatever you can to develop a support system. I suspect we may never know when we’re at our last straw.

Also, for professionals and parents, please educate yourself and be aware that Autism may not currently be a specifically protected disability in your state in the US. I need to update my research. But my point is, please do everything you can to learn about workplace stress and accommodations when you or your child choose(s) a career path.

I went along with my parents and entered the profession of Architecture, having no idea how brutal it would be. I laugh now because Dad thought I wouldn’t manage to make a career as an artist. By the time I ended up on Disability, I was almost penniless and beyond exhausted. I probably would have done better and been much happier as a starving artist.

If you or your child have a passion to follow, please do. I love my parents dearly (bless my late father’s heart) but trying to please them by sacrificing my dreams nearly killed me. And I’m not exaggerating.

Please be kind to yourself and others, and trust young people when they hold a cherished aspiration. Treasure and protect what makes you unique.