September 29th, 2016
I’ll never forget hearing the Atlanta NPR affiliate’s interview of someone who identified as a person with autism. The discussion was about participating in studies or donating his brain to science upon death. He made the comment that autism was the reason why he was never able to become an astronaut or marry a supermodel. When he said that the only thing holding him back from this spectacularly successful life was autism, I laughed so hard I almost cried. By definition, most neurotypicals are average. While they are not subject to the particular problems of impairment and disability, they are by no means immune from difficulties. Normality doesn’t guarantee an effortlessly amazing life.
The man in the interview was older. I don’t see elaborate fantasies of a perfect, neurotypical life paired with a vague, wistful sense that an autistic life can never be quite sufficient nearly as much among younger Autistic people. It isn’t, however, entirely absent, and that worries me. Autism-as-physiologically-grounded-impairment and autism-as-disability can be anything from net benefit to the cause of intense discomfort. There hasn’t been as much autism quality of life research as I would like to see. What I’ve seen in the community, is that connection to other people, the opportunity to take on valued roles, and individual attitude make all the difference. After I started writing this post, I was fortunate enough to attend David Pitonyak’s day-long talk on supporting people with challenging behaviors and heard that there is some neuroscience research supporting the importance of connection and valued roles.
That wasn’t surprising. I’ve seen people who are very impaired find happiness where they have an active social circle and genuine ways to contribute. I’ve seen people with the most minimal impairments, people whose prospects looked great on paper, self-destruct in the absence of one or both of these things. I’ve seen people fail to reach out and latch onto these necessary ingredients of well-being, when both are readily available, because they can’t imagine life working out for them. What makes me worry about Autistics who believe everything in life would be good if they were neurotypical is not just that it leads to disappointment with the way things are. That way of thinking also diverts precious time from making life as good as it can be into rumination. It leaches mental energy for realistic ways to change conditions in the here-and-now so as to make life better and tends to lead people to live their lives in their imaginations. Imagination is a two-edged sword. Slowly, hour-by-hour, years of life can drip away into these fantasies. This may work something like the financial consequences of a leaking pipe that goes unnoticed until the mold problem is visible and the water bill astronomical. What has been lost may not be apparent until significant damage has been done.
So long as life continues, it’s never too late. A person who wakes up from dreams of neurotypicality at 70, builds a life around what is, enjoys forming relationships with accepting people and living into her strengths, and dies at 75 hasn’t wasted her life. However, the wasted years are a tragedy one could prevent by teaching people to work around autism as a reality that isn’t likely to change. The loss is all the more terrible for the fact that being neurotypical doesn’t fix everything. Neurotypicals also have to be satisfied with dreams that aren’t all achieved and challenges that aren’t all surmounted. They’re by no means immune from things like disappointment, poverty, and loneliness. All lives are varying degrees of imperfect. The worst part of living in dreams is that people who wake up and engages with reality relatively late in life may not respond by seizing every day they have left in both hands and their teeth. Sometimes, they may despair and become part of the Autistic community’s suicide problem. They may destroy themselves in subtler ways, like eating disorders or substance abuse.
For all of these reasons, I would advise Autistics not to spend much of their time on questions of how things would be if they were neurotypical. Who cares? They never will be. Worrying about how things might be is as much of a waste of your time as ruminating on how you would live if you could fly. Any cure for autism that comes about in our times is likely to look a lot like the “cure” for Down Syndrome readily available to the handful of Americans financially and geographically situated so as to have access to abortion in practice. Besides, you probably wouldn’t be a billionaire, or an astronaut married to a supermodel of the gender of your choice, if you were neurotypical. You would just be a person with a different set of strengths, weaknesses and problems. You might or might not be any happier than you are today, and, quickly or slowly, those questions will steal your one, precious life. Instead, ask questions about where you could find more deep, meaningful connections with other people. Ask how you can move into roles that give you a way to contribute even if you can’t work. How could you advocate for your rights in ways that would expand that menu of options for thriving? Do you need medical help, educational help, legal help, your friends’ support, or something else to get there?
I would advise professionals providing services to Autistic people to ask the same questions. Figure out what would really improve the client or consumer’s life. Don’t assume autism is the primary obstacle to the individual’s happiness. Figure out what that really is, and act on it. Teach self-acceptance when you find yourself interacting with Autistics, especially young ones. Ask yourself what the ultimate end is. If full independence isn’t possible for the person you see, what about a positive, autonomous, thriving interdependence? The particulars of success are highly individual, but the generalities don’t vary much between people. What can you do to make sure the people you serve have the same big-picture things that you need to thrive? Don’t forget that constantly rejecting and trying to treat away the self one has probably precludes happiness. Self-acceptance, including autism acceptance, is a necessary condition of Autistic people’s well-being that makes room for the things that are sufficient conditions for well-being. It’s about more than happiness. Sometimes, it’s a matter of life and death.