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My Autism Hasn’t Changed -- My Life Has

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I have always been a “quirky” person. I pride myself on it. I grew up in the San Francisco Bay Area where diversity is as hip as avocado toast (for which I must also admit my love). I was incredibly privileged to have parents who did not see my differences as a flaw but rather as a potential strength. I strongly believe this was informed by my dad’s own neurodivergence, something that has helped him succeed in life.

He gave me the best advice I think I could ever have received as a kid:

“People are weird. You don’t have to like it, but you do have to learn to work with them.”

Unfortunately, my memory of childhood has faded, but what I do remember is largely positive. Of course, I remember being weird, and not quite fitting in, but despite that, I had close friends who one-on-one got along with me well. I was able to pursue my special interests such as reading endlessly about the Titanic and the history of American women and social justice or devising complicated custom ciphers and puzzles. I even led an elementary school protest movement over age-divided lunch changes! When I was 10 though, I discovered my true passions, coding and singing. From this age, my sense of self truly developed. I was good at these activities and combined with my passion, it was easy to garner respect and praise from others.

By the time I entered high school, I knew exactly who I was. My choral endeavors had allowed me to travel internationally with my choir Kairos and my coding skills had progressed (through the wonderful art of Tumblr theme design) to landing me an internship with a small web design firm in Oakland, California. My neurodivergence was paying off in a big way.

In response to my natural social illiteracy, I had developed strong public speaking skills and the ability to analyze the behaviors and motivations of others. In fact, this procedural manner of dealing with social interaction gave me the guts to do things others perhaps wouldn’t out of fear of not fitting in. I had never fit in before, and I didn’t know what the point of it would be.

My goal was always to be respected, not assimilated.

For example, I got that internship by walking up to a presenter at my Girl Scout troop’s meeting and simply asking for an internship — with nothing but a few Tumblr blogs to show for a “portfolio.” In retrospect, it was a wild move. But at the time, it seemed simply logical.

When I entered College Prep, I had a bit of catching up to do. Many of the students came from private middle schools and had quite an advantage in grammar. I also had skipped a grade in math and was still filling in the holes in my knowledge. But my passion for learning quickly drove me to catch up. It was heavenly to be in a place where I was not just “the smart kid.” Instead, I became known for my choral music and project announcements, which I would make weekly before the whole school assembly. These new peers who had never seen me outside of this environment would probably be hard-pressed to see me as autistic.

Without the context of my early development, I had learned to mask my “undesirable” traits well and to project instead my passion, commitment and skills. Still, despite the fact that I was well respected, I did not have many close friends. It slightly embarrasses me to say that I have probably only stayed in contact with one friend from College Prep, and she went on to my university. It is not that I did not have the utmost respect for my friends and peers at school, but without a lot of one-on-one time spent with them, I did not garner much close connection.

I greatly enjoyed the lunchtime conversations I was able to have in this incredible environment where economic policy, politics, philosophy and more were all on the table for a casual lunch chat. But I was far more interested in my coding projects and choral performances than I was in after-school boba chats about high school social life.* In addition, I met my now-husband at this time and spent most of my one-on-one friendship energy on that relationship (something that wonderfully screwed up my sleep schedule as he was in Australia at the time and I, California).

I had my first relationship in high school and I will always be grateful both to my first girlfriend who was an incredibly supportive and kind partner as well as to the many many choral friends who helped nudge the two of us together over our shared obsession for Fitzsimmons from Marvel’s “Agents of SHIELD.” I’m pretty sure even our director found it rather cute. I have always found romantic relationships or “best friendships” easier than casual friends, as these are people I can truly come to understand and empathize with — something that is hard in a group setting.

By the time I entered Wellesley College, my first choice, I was on top of the world. College Prep had left me over-prepared for my basic first-year units and I immediately garnered respect having been in computer science for half a decade already in a class of mostly newbies. I became obsessed with Carillon, made great friends due to the good structure of my dorm and a lucky random roommate selection, and was generally just sailing through life. If my autism was masked in high school, it was invisible now.

And then sophomore year hit and it all came crashing down.

I will not get into the full details of my health collapse, but suffice to say years of ignoring my health combined with bad genetic luck and perhaps an unlucky environmental trigger or two lead to complete fatigue and loss of self. I was unable to pursue the special interests that had fueled my success. I was unable to muster the energy to keep up with friends. I was unable to simply do the basic things like reading books that made me happy. I became severely depressed.

Over the past two years, I have been slowly coming to terms with my chronic illness. As of last year, I finally have a name, Behcet’s disease, but that doesn’t truly solve my problems.

What I have come to learn is that the neurodivergent traits that drove my success when I was well can come to sabotage me when I am sick.

My sensitive hearing made singing in choirs sensory bliss. I can honestly say that a good Eriks Essenvalds piece brings me more joy than just about anything (yes, including that). But now my sensitive hearing makes triggering my migraines incredibly easy.

Lawnmower… Migraine. Construction… Migraine. AC unit on a bad day… Migraine.

Deriving pleasure from my special interests more than from casual friendships made me successful. But it also had made keeping up my mental health while ill a difficult proposal.

Finally, I have always considered myself (when I considered myself autistic at all) “high functioning” or “very high functioning.” In addition to the fact that functioning labels hurt all autistic people, this statement was also heavily biased by circumstance.

If I hadn’t had the right parents, I wouldn’t be “very high functioning.”

If I hadn’t had socially productive and acceptable special interests, I wouldn’t be “very high functioning.”

If I had suffered more trauma as a child due to circumstances outside of any kid’s control and easy to do for autistic children, I wouldn’t be “very high functioning.”

When I am struggling with mental and physical fatigue, I am not “high functioning.”

In contrast, my husband has seen me at my worst. When I am unable to speak for hours to days. When I cannot stand even the slightest wrong noise or texture. When I can only scream to express my feelings. When I cannot muster the energy to appear in public, much less appear “normal.”

I am not “more autistic” at these times. I am more overwhelmed.

I have just started seeing a therapist who specializes in women with autism. I have started posting on and reading autistic forums. I don’t think I was wrong not to do this before. But I also believe that I am justified in doing so now. Autism is a difference in thinking. It can be a disability, but much of that disability comes from the additional stress we face living in a neurotypical world and the fact that the way we react to that stress is atypical. Masking and acting neurotypical are resource-intensive processes that can be worth doing sometimes. But if we do not recognize the toll this takes on us, we are not doing justice to who we are.

So please, if you know someone who isn’t neurotypical, no matter how they may express it, take the time to remember that there isn’t a right way to be autistic. There isn’t a better way. There is only the way that is right for each of us, and that will and should change over time in reaction to our circumstances.

Whether we “appear autistic” depends as much on our circumstances as it does on our neurology.

*PS: If any of my friends from high school is reading this, I hope I’ve not offended any of you and I’m always happy for a chat about some interesting intellectual fun.

This story originally appeared on Medium.

Photo by Max Templeton on Unsplash.

Originally published: April 5, 2021
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