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 ….
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.
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 14th
Street 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.”
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 help
companies 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
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?
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.
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.
Labels: Asperger's Syndrome, autistic spectrum, Bill Gates, brains, college, Dr.Stanley Greenspan, jobs, media, millennials, minorities, neurodiversity, Pace, PDD-NOS, Steve Jobs, Temple Grandin, Tiger moms, twins