Yesterday, Lynne Soraya imagined what her life would have been if she had been diagnosed early. She wrote an accurate portrayal. At six, experts told my parents that my autism was serious. It would get worse. I was a bright, quirky, happy child. I talked incessantly from eighteen months. I was not more awkward than most people at the University of Chicago, where I was born and had lived until the previous year. No one explained the concept of a spectrum to my mother. No one countered the stereotype of the child rocking in a corner. They prognosticated poor marriage prospects and isolation. They said I might never have friends, though I did. Mom half-believed the diagnosis. She was afraid.
Suddenly, imaginary friends were threats to any hope of real ones. Eye contact was crucial. Sensory issues that had been accommodated because no one wanted me screaming over socks demanded occupational therapy. Every outing was an opportunity to correct my movements and posture. Parental attention had to teach social skills. This wasautism. Anything else would have been negligent. The stakes were my life, future, normality.
Meanwhile, I wondered why my parents were disappointed. Even the way I played was wrong. Mom, who had insisted that there were many right ways to do almost anything, criticized my gait. Had I always walked badly? If not, why was I suddenly inadequate. Mom made two of my favorite toys, plastic aliens from Chicago’s Science and Surplus, odious by using them in social stories. I knew they were designed to be ‘friends.’ They were when I played with them, telling myself stories about their exploits in the outer reaches of the solar system. Mom sent them to school. That seemed all wrong for aliens. Besides, it was as transparently educational as children’s public television
Eventually, it became clear that my father was the source of these traits. He is thirty years older than me, undiagnosed, successful, content. My autism, like his, is advantageous unless ableism is in play. The downside is that it makes institutional living painful. College will end soon. Later, I will plan to age in place sans nursing home. Otherwise, things are going well. My life works because I run it. I want more people with disabilities to have that opportunity. When we are allowed to choose, experts make the decisions. We know our needs best.
Neither autism nor ableism are routine, pressing problems. My worries are banal, the cost of law school, the price of gas, papers, performances, valve oil, groceries, traffic. The major struggle I do not share with allistic peers is a dark worldview. I grew up around adults who thought giving me a decent life meant changing me. Alone, I defended my integrity of mind, self, against everyone. My parents, teachers, peers were threats. I trusted practically no one. It was the sensible approach. Intellectually, I knew I was safe at eighteen. There is little anyone can make me do. Viscerally, it will take time. Fallout from Soraya’s “Nevers” is worse than autism. It was preventable.