Let’s start with the fact that life anywhere on the autism spectrum can be challenging and lonely for families. In spite of progress made by support groups, therapies and special education programs designed to engage autism families, individuals of all ages on the spectrum are still stereotyped and marginalized, whether they are brilliant, articulate savants or unable to speak. The fact that the spotlight ends up on the extremes is well documented by current media (plays, movies and TV shows). I doubt anyone would dispute that the middle of the spectrum is MUCH less often presented, even in our increasingly word-policed, politically correct world.
Now I’m going to wade into the treacherous swamp of expressing my opinion. As many readers may have noticed, an increasing number of movies and television shows are jumping on (cashing in on?) the autism bandwagon. The latest movie will feature Dakota Fanning—yet another neurotypical actor—playing the role of a young woman with “higher functioning” autism. This disappointing development follows on the heels of shows like “Atypical” and “The Good Doctor” and films such as “The Accountant” and “Good Time,” all starring neurotypical actors, with a few disabled extras included. I have already expressed my gratitude (and my dismay) at these baby steps forward.
Currently, the spotlight is on the extremely high or low end of the autism spectrum in TV, movies and theater. The entertainment world has decided that brilliant savants and non-verbal, severely autistic people make more compelling characters than those who live in the middle of the spectrum (the vast majority!) This “middle group”—much like today’s middle class—is largely ignored or given vague promises which aren’t kept. Sound familiar? Everyone admires and respects brilliance and financial success, even if accompanied by a prickly or quirky personality. At the same time, everyone’s hearts go out to the severely disabled, who are non-verbal and unable to care for themselves.
What about those people with autism who are more “average,” comparable to, say, a C student? Not so much. I’m referring to those on the spectrum, who speak later (and perhaps idiosyncratically), who may or may not make it through college with lots of tutoring, and who will always struggle with all forms of communication, but especially in subtle, gray areas, where complex abstract thinking is necessary. Most of these hard-working individuals fall off a cliff after the dependable structure of schooling ends (whether that’s high school or college). These young adults—more than 90%–enter a free fall, totally unable to secure and maintain employment. They long for relationships, independence and a place in the world, but they have no one to help them except for their aging parents. Some of the individuals in what I’m calling “the middle” have special skill sets or talents that would enable them to live meaningful productive lives, IF more people cared about providing them with appropriate housing and employment support (mostly available only to those with more severe autism).
My daughter Samantha, now 27, is part of this 90% living somewhere in the middle of the spectrum. Yes, she is one of the lucky ones who received early intervention and every non-invasive support we could give her. As parents, we were lucky too. Samantha has always been tremendously motivated to succeed and puts 110% effort into every waking moment of her life. So where does that leave her (and us)? Enormously proud and also very worried about her future, when we are no longer around to guide her and advocate for her. We are living on the precipice of—we don’t know!
In 2018 Samantha’s movie, Keep the Change, will open, along with floodgates of media attention: admiration, envy and perhaps criticism for how she handles the media and an intensifying spotlight. At the same time, there will be more film festival screenings, more invitations to Q and A sessions. Samantha’s schedule may be upended, already a source of severe anxiety. But will she be offered new opportunities and a chance to earn a living? Or is she enjoying her 15 minutes of fame, only to fade into oblivion as soon as the current intense interest in autism moves on to another issue?
In some ways, life in the middle of the spectrum is the worst place to be. As talented as our daughter is, she will (most likely) never be a Broadway star. On the other hand, Samantha should have chances to perform and compete with others and develop to her full potential. Finding such performance opportunities is NOT easy now and it NEVER has been.
All her life Samantha auditioned for school and camp plays, and rarely got the opportunities she deserved. All of her special ed schools believed she was lower functioning and less capable than other students who were considered “safer” choices. Yet at her special needs summer camp—where she was clearly one of the most talented—Samantha was NEVER given the lead role. Why not? The camp director told me that “other campers who have lower self-esteem need to be the stars to help with their confidence.” (!!!) Talk about being stuck in the middle.
Years later, at Landmark College, Samantha sang in the choral group and performed a small role in a play (as Frankenstein’s “slow” kid sister). At Pace University’s competitive theater program, she auditioned to be a musical theater major and was not selected. Now she participates in theater groups for disabled and neurotypical performers and seems happy enough, but yearns to live on her own. In order for that to happen, Samantha will have to break out of “the middle” and actually be paid for her performances. On the cusp of success, she has already been bullied by other disabled actors who believe they are smarter or more talented. There is jealousy above and below her, making life in the middle of the spectrum an unenviable position. Those on top with Asperger’s can take care of themselves, using their superior verbal skills to advocate and adapt. Those on the bottom must and will be cared for, because there’s no other choice. Those in the middle? Maybe they’ll manage somehow. Next crisis.