Mar 14, 2017 by

Perfectly Normal

Perfectly Normal

Through music and relationships, a man with Asperger’s syndrome finds another way to be “normal.”

By JORIS DEBEIJ on Publish Date March 14, 2017. Photo by Joris Debeij. Watch in Times Video »

At about the halfway point of “Perfectly Normal,” the artful short documentary about a man with Asperger’s syndrome, there is a rare filmic experience of the sensory overload of autism.

For about a minute, as Jordan, the articulate middle-aged subject of the film, speaks about his own condition, the music skitters and booms, rapid jump cuts intensify the sense of danger, and in this swelling moment of uncertainty, the viewer experiences a fleeting sense of what it might be like to live in a condition of permanent, anxious neural flood. “You think life has one circle, but no, there are circles which are added to extra circles that create chaos, and it looks like you’re drowning,” Jordan says. (The film is the latest release in The New York Times’ Op-Docs series.)

Of course there’s no way for those without autism to actually understand the autistic experience. I grew up with a severely autistic older brother named Joshua, and after observing him closely for more than 40 years, find his emotional and cognitive process as fundamentally mysterious as ever. The impenetrability of autism, with its seemingly endless variants and its essential “otherness,” is its hallmark. All this renders Jordan’s testimony that much more useful and intriguing. He is a reporter at a hinge-point of consciousness, able to inhabit his condition while describing it for us — whether we are “neurotypicals” or lodged somewhere on the spectrum — with remarkable precision and insight.

As a documentary, though, “Perfectly Normal” is necessarily a partial version of the truth. When Joshua and I were filmed for a short documentary, for example, I was struck by how the film showed a higher-functioning version of the person than the one I knew. That was because, like many people with developmental disabilities, my brother had evolved a repertoire of stock responses to social situations. Glimpsed serially in a 15 minute film, these responses added up to a semblance of a socially appropriate person, and skipped the endless testing questions and self-involved rhetorical loops that make him so exhausting to spend time with. (The film, “The Inviolable Bond,” can be seen here.)

Jordan and his girlfriend, Toni, obviously have another life than the one revealed in the film. But what is beyond dispute is that as someone with Asperger’s (the name was retired in 2013 in favor of the more comprehensive Autism Spectrum Disorder, though it remains in use), he stands at the very apex of the high-functioning end of autism. He drives a car, maintains a job, has a stable intimate relationship — all things that were ruled out in Joshua’s case because of the severity of his condition.

And yet though Jordan occupies a different universe from Joshua, who was institutionalized at 11 and will remain so for the rest of his life, the two universes are coextensive, and faint echoes of my brother’s far more severe or “classical” autism can been perceived in the slight flatness of Jordan’s voice and affect, the strangely mechanical way he walks or chews his food, the compulsive intensity with which he applies himself to daily tasks.

Another thing the two have in common is their age, and as such, their membership in that most challenging of demographics for those with autism and developmental difficulties: adulthood. Eclipsed by the ballooning interest in (and apparently rising incidence of) autism in childhood, those like Jordan and my brother exist only in the underfunded shadows of the major studies, the breakthroughs in treatment, the national debates. A peculiar silence currently surrounds the population of adults with autism, living out their lives in homes and institutions.

About a year and a half ago, I wrote an Op-Ed for The Times (“Adult, Autistic and Ignored”) lamenting this depressing situation and pointing out how our culture seemed to have twin blind spots for both older adults with autism and for teens with autism and developmental disabilities about to enter adulthood. At the moment a majority of these young adults are stripped of their various federally mandated supports and services and forced to draw from the far smaller pie of state-by-state funding. The timing is cruel and the results are inevitable. Without the transition services, job retraining and therapy necessary, the rate of full-time employment in 2009 for individuals with high functioning autism or Asperger’s was a dismal 12 percent.

Not much has changed since then. I appreciated that this stirring, powerful film ends on a lingering note of romantic resolution, but the island nation of adult autism of which Jordan is a member remains as neglected and underfunded as ever.

1 Comment

  1. I volunteered at the State Training Center in Mansfield, CT during my college years at UCONN. This makes me think hard about what is the best practice to help today.

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