Since my daughter Sarah was diagnosed on the autistic spectrum at age one, I’ve fought as hard as any Tiger mom to help her grow up to become as accomplished and independent as possible. Instead of striving for the “American Dream” — including owning our home— Henry and I invested our energy and money in our daughter’s future. We looked for the best schools, the best therapists and cutting-edge treatments, and paid top dollar for them in the hopes of giving Sarah the best chance of achieving her dream of going to college and becoming an independent adult. Always in the back of my mind was the idea that Sarah’s brain could keep growing and learning; maybe tomorrow or next year she would function more like a neurotypical kid. I always believed she would eventually learn to read, make friends, get invited to parties, have a boyfriend, graduate high school, college, and – find a job!  With Sarah’s spunk and determination, I was convinced she’d exceed the expectations of the curmudgeon therapists who’d long ago predicted she’d be doomed to live in an institution. But I also knew Sarah’s brain might take a very long time to grow up ….
     Early on I gave up on Sarah catching up to her neurotypical twin brother, Max. An intellectually gifted boy, he raced further ahead of his sister with every passing year.  Luckily, Dr. Stanley Greenspan—a renowned child psychiatrist—had warned me that helping Sarah would be “a marathon, not a sprint.”  Propping up my spirits along the way, he added that “one child might learn to write script at age nine, while another might not do it till age eleven.”  Of course all that mattered in the end was accomplishing the task, right? (These days script doesn’t much matter anyway). According to Dr. Greenspan, the plasticity of Sarah’s brain would enable her to continue developing until age 30, whereas her twin brother would probably reach intellectual maturity at an earlier age.

     Now nearly 24, Sarah has miraculously graduated cum laude from Pace University. (See “Miracle Milestone,” 5/25/14). She even has a social life, with friends (albeit on the spectrum) and a serious relationship for over a year. What she does NOT have is a paying job.  Instead, Sarah has managed to get volunteer jobs at a non-profit theater group, working with special needs kids and adolescents, singing to the elderly and assisting at the 14thStreet Y with young kids. Currently, my daughter also takes singing lessons, (she has perfect pitch!), attends the Adaptation Program for Young Adults with Disabilities at the JCC. In addition, she works out at the gym and attends Co/Lab, a theater workshop for adults with disabilities.  In other words, she keeps herself busy.

     But as Sarah says, “It’s not good enough.” What Sarah wants—like other young adults—is a full-time job that makes meaningful use of her talents. Now that her school days are behind her, my daughter is looking for a new purpose—meaningful work toward meaningful goals.  Instead of good grades and teachers’ compliments, Sarah now seeks payment and positive feedback for a job well done.

     As a high-functioning young adult on the spectrum, Sarah is far from alone in her unemployment. Autism specialists are warning of a “tsunami of young adults aging out of school programs, with nearly 500,000 adults with autism expected to seek employment over the next decade.” Employment prospects for young adults with an autistic spectrum disorder (ASD) are dim, according to recent studies. More than half of young adults with an ASD had NO participation in either work or education two years out of high school, and even six years later, more than 33% were without work or higher education.  What a waste of human potential!  Many parents of children with autism describe leaving school as “falling off a cliff because of the lack of services for adults with an autistic spectrum disorder,” observed Paul Shattuck, an assistant professor of social work at Washington University.  (Yes!)  “So much of media attention focuses on children,” said Shattuck. “It’s important for people to realize autism does not disappear in adolescence. The majority of lifespan is spent in adulthood.”  (Amen).

     Speaking of media attention, the press has also focused on people such as Temple Grandin, with Asperger’s Syndrome, the mildest form of autism. Thanks to Grandin—the now-famous author and animal behavior expert—attitudes toward autism have improved somewhat. These days there is a neurodiversity movement, which views high-functioning autism not as a disability, but instead as a different mix of talents and human potential that can actually helpcompanies improve. To some extent, people with Asperger’s Syndrome have even become media darlings. Surely you’ve heard journalists rhapsodize about Steve Jobs and Bill Gates, speculating that their brilliance may be due to undiagnosed Asperger’s Syndrome.

     Of course, the most common forms of autism—like my Sarah’s PDD-NOS and other dubious labels—are a lot less glamorous and more debilitating. I don’t think Sarah’s likely to invent the technology of tomorrow or improve animal slaughtering methods, but does that mean she and people like her should be relegated to the sidelines their whole lives? People on the spectrum are human beings with unusual qualities who can still make meaningful contributions to society. Like other minorities, they cannot and should not be marginalized. Isn’t it cruel and hypocritical to include and support kids with ASDs in schools and college (all in the name of diversity and political correctness) only to abandon them completely once they graduate?
     Thankfully, there are a handful of small businesses and non-profits that are pioneering efforts to employ a variety of young adults on the spectrum.  One non-profit, Extraordinary Ventures, was founded by parents of young autistic adults in Chapel Hill, North Carolina to help their children find meaningful employment in a range of businesses from bookstores and carwashes, to a film production studio, a web service company and local bakeries.  Alas, Henry can’t practice law in South Carolina so we can’t move there for Sarah to avail herself of those employment opportunities. Plus I’m sure it’s a lot more expensive to start up one of these businesses in the Big Apple.

     The question is: Why should a company go out on a limb and hire someone with autism when there are boatloads of neurotypical millennials looking for work? Answer: Maybe a young adult with autism will love and appreciate one of those entry level jobs disdained or merely tolerated by neurotypical college grads. Further, young adults on the spectrum might perform repetitive tasks BETTER than their neurotypical peers, bringing more enthusiasm and an eye for detail because they are stimulated (rather than bored) by this painstaking work.

     Bonus: Who knows what businesses may learn, or how they might profit, from the unique perspectives offered by different kinds of minds?  (Remember Temple Grandin.) Furthermore, patience, kindness and a willingness to adhere to routine—qualities associated with many on the spectrum–might prove very beneficial to some employers.  If we’re going to have laws requiring ramps for people in wheelchairs and accommodations for the deaf and blind, don’t we have a moral obligation to provide people on the spectrum with opportunities to be productive in the workplace? Nurturing and educating people with disabilities have been critical first steps, but we MUST keep moving forward.

     Day after day, Sarah asks if I’m proud of her. “Of course I am,” I assure her.  But no matter how many times I tell her, she needs to hear it again.  

     “Why can’t you tell me I’m doing a fantastic, wonderful job?” Her tone is both plaintive and demanding. “Will you be proud of me if I get a paying job?” 

     Saying I’m proud of her whether she gets a job or not isn’t going to satisfy her. Like most neurotypical adults, Sarah can’t feel proud of herself if she’s not productive.  Can you blame her?

     I don’t need gifts this holiday season. What I want is for my sweet, hard-working Sarah is to find a paying job, (or even an internship that leads to one.)  Maybe next year.


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