Getting myself found

Caren Gussoff Sumption
10 min readSep 10, 2020
Photo by Daniel Jensen on Unsplash

Please note: I made some decisions and drew some parameters in this personal essay. The generally and stylistically preferred terms/constructions are Autism Spectrum Disorder (ASD) and person-first language,. In this essay, I use “ASD” and “autism,” and “people with autism” and “autistic people” interchangeably. I also lean on the crappy terms “low” and “high” functioning, for simplicity’s sake only. When I specify gender, I’m not including sex, but include anyone with that gender identity. I also did not address the barriers my trans and enby family face with the same issues.

In the 80s, we didn’t talk about Autism Spectrum Disorder.

We talked a lot about nuclear war and Communism, about saying no to drugs, about poisoned Tylenol bottles and razors in Halloween candy.

We talked about drunk driving, stranger danger, and windowless vans. Satanists and what lyrics said backwards. The PMRC, MTV.

Later, we’d also talk about AIDS, and a little around depression, suicide, and teenage pregnancy.

But not ASD.

In fact, I can remember only a few instances of anything about anyone with autism ever — the non-verbal teenager and his snow globe at the end of “St. Elsewhere,” and Dustin Hoffman as a savant, capped by a really bad haircut.

There may have been others, but if so, I didn’t notice. Autistics were white, they were male and middle class, they were “low-functioning,” and they were nothing like me.

Until 1986, the Diagnostic and Statistical Manual of Mental Disorders (DSM) listed three criteria for diagnosing autism. They were “…a lack of interest in people, severe impairments in communication and bizarre responses to the environment.” It specified that the presence of such impairments would manifest before an individual was 2 and a half years old (Zeldovich, 2018).

In 1987, the diagnostic criteria was revised and increased from three to 16 symptoms. However, almost every data point used to expand the criteria was pulled from studies of boys (Szalavitz, 2016).

I was born into trauma. Inherited, cultural, religious, financial, social. Family tragedies, addiction, and death. My immediate family was drenched in it. Even when things were calm, storm clouds were always…

Caren Gussoff Sumption

Writer, dabbler, bon vivant. Nerdy words for nerdy people.