What happens when children with autism grow up and yearn for adult lives of their own?  The documentary, Autism in Love, beautifully and bravely explores that question. Directed and produced by Matt Fuller, Autism in Love delves into the relationships and challenges of four individuals on the spectrum. Alternately heartbreaking and uplifting, this documentary convincingly demonstrates that what people on the spectrum want is what we all want: love and acceptance. Being “higher functioning” like Dave and Lindsay, “lower functioning” like Stephen, or somewhere in the middle like Lenny doesn’t change their humanity or their desire for close relationships.

Dave and Lindsay are thirty somethings, wmarriage proposalho meet at an autism conference and have a relationship of close to 10 years before Dave kneels next to the tree where he and Lindsay once kissed to propose marriage. This marriage proposal is a hard-won triumph as both members of the couple have had misgivings about the relationship, whether they can accept each other’s quirks, communicate their feelings effectively, and—in the end—trust each other. Separately and together, they voice their doubts, explain their differences, show their affection for each other in spite of unusual facial tics and hand movements. By the time they marry, it seems clear they are well on the road to a long, satisfying relationship.

engagement ringWitnessing Lindsay say ‘yes’ to Dave’s proposal and slip the engagement ring onto her finger brought tears to my eyes. As the mother of a 25 year old daughter on the spectrum, I can only pray that one day my Sarah will find a husband (the best fit for her) also.  I can only imagine the joy of Lindsay’s father who had expressed the hope on camera that Lindsay and Dave would finally take the big step. Parents like me dream of such a moment, desperately hoping our sons and daughters on the spectrum will be loved by someone after we’re gone.

stephenStephen—who appears expressionless and speaks simply in a voice devoid of affect—has, against all odds, been married for 20 years to Gita.  In many ways, Stephen resembles Dustin Horain manffman in the Rain Man as he recites answers to game show questions and remembers what day of the week it was ten years ago. When we meet Stephen’s wife, Gita, on camera, she’s dying of ovarian cancer. Bald and frail, Gita explains that she is not autistic but has some learning disabilities; nevertheless she loves and accepts Lenny because they “understand each other.”  Still, it is clear that Lenny does not understand or accept that Gita is dying until the moment his mother tells him and he puts his head down on a table.  When asked, Lenny says that he loves Gita even though he can’t explain what love is beyond hugs and kisses. (Many neurotypical people can’t “explain love” either)!

As sad as it was to see Stephen widowed in his 40’s—and I imagine it must have been devastating for Stephen’s elderly parents—at least he had experienced a long, loving relationship in spite of his many challenges and limitations. There could be no more poignant example of the expression “it’s better to have loved and lost than never to have loved at all.”

Desperately lonely Lenny—a twenty-something young man who lives with his mom in LA—yearns for love, but despairs of ever finding it because of his autism label. Although his mother tries to help him accept himself, Lenny says he’d “rather be normal than autistic with a million dollars.”

lennyLenny rages about “being different” and sees himself as “lower functioning” than his peers. “I dreamed of going to college when I was in high school,” he lamented. “I should have gone to college, should have graduated by now.” Lenny wants a job and a girlfriend; his desires are expressed with so much passion and naked honesty that I found myself wishing his mom would help him apply for a scholarship to colleges with autism support programs, like the OASIS program at Pace that Sarah  attended.  I’d like to help that young man, but it’s hard enough trying help Sarah find a place in the world— and she already has a boyfriend and a college degree.

In many ways Autism in Love has ventured into pioneer territory by shining a light on what happens when all the cute-but-challenged children on the spectrum become adults with disabilities who clamor for a place in the world with their neurotypical peers. There are few outreach programs, vocational supports or accommodations available at schools, like time-and-a-half, a note-taker, or a quiet room at most workplaces. While the world is busy researching prevention, causes and treatment for autism, huge numbers of kids like my daughter are graduating as young adults into a world that is mostly unwelcoming. (See “The Unwelcome Mat,” 11/20/15).

When Sarah was born in 1990 and later diagnosed with autism, finding effective treatment and appropriate schools was difficult and discouraging. There were no autism support groups, no internet, and lots of depressing and confusing labels. Parents like me were pioneers, trying myriad unproven treatments, fighting with insurance companies and school boards.  Although life has gradually improved for infants and school age children on the spectrum as the number of babies diagnosed with autism has grown to 1 in 45, (a virtual epidemic!) that is not the case for young adults with autism. They graduate from the structure and support of school into a bottomless free-fall of invisibility in American culture. Once again autism families like mine find themselves in pioneer country. How will these young adults learn to live, love and work independently?to the moon

Autism in Love offers a glimpse of the struggles autistic adults face.  Shown on Channel 13 on Monday on Monday, January 11th, this documentary will be released in April for Autism Awareness month: http://www.pbs.org/independentlens/films/autism-in-love/ Coincidentally, my memoir, My Picture Perfect Family – What Happens When One Twin Has Autism, (also out in April) show the challenges of loving and raising a child on the spectrum for eighteen years. What’s the message shared between a documentary about adults with autism and a memoir about a child growing up on the spectrum? Glad you asked!

Perhaps the newly married Lindsay expressed it best. “Everyone on the spectrum—no matter where we are—is worthy of giving and receiving love.”

 

 

 

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