If a fortune teller had predicted I'd write a blog called
The Never-Empty Nest, with
100 posts over a two year period, I’d have called that person crazy. How could I possibly write about issues
related to young adults struggling to leave the family nest almost every
week? Surely, I’d lose interest, run out
of ideas, or just become too busy living a complicated life to post in
cyberspace for an infinite number of Fridays. Yet, here I go (again!) blogging onward. My twins, Sarah and Max, have
(mostly) flown the coop, but that doesn’t mean their issues of living
independently—along with those of many other millennials—are fully resolved
(nor are the worries of their baby boomer parents).
As I
begin my 100
th post, I can now see that my subject is as endless and
inexhaustible as the conference I attended this weekend for the Asperger's Syndrome and High-Functioning Autism Association (AHA) at Adelphi University. “Coming of age” is difficult and complicated
enough for a neurotypical young adult. But for young people on the spectrum,
“the growing up process” remains a steep, uphill journey that will be evolving
for a long time, according to John Robison, the keynote speaker at Adelphi, who
grew up at a time when Asperger’s Syndrome did not exist as a diagnosis. Can
you imagine the stress of growing up, trying to fit in (and failing) without
any idea of what was the matter? Finally, at age 40, Robison was diagnosed on
the spectrum, followed by his son 10 years later. Now an acclaimed author,
public speaker and educator, Robison has written the best-selling memoirs
Look Me in the Eye: My life with Asperger’s,
Be Different: My Adventures with Asperger’s and My Advice for Fellow Aspergians,
Misfits, Families and Teachers, and Raising Cubby. A brilliant (and
anything-but-shy) speaker, Robison not only describes the evolution of his own
success with humor and inspiration, but also serves as a role-model for how individuals
can lead successful lives based upon their gifts, instead of being marginalized
because of their disabilities.
Both
Henry and I found him mesmerizing and thought-provoking. (Henry’s no
smoke-blower, as he likes to say). Not only did Robison tell his own
life-story, but he also spoke of neurodiversity in terms of “the recognition of
differences as the next civil rights frontier.”
Today, he said, it’s common practice to discriminate against people with
autism. How many times, he asked, do we
read about a murderer who is described as autistic? Look at the way the press
debated whether the Sandy Hook shooter, Adam Lanza, had Asperger’s syndrome,
and whether that contributed to his violent behavior. Such a description is
perfectly legal—and not even viewed as politically incorrect—despite the fact
that there’s no connection between an autistic spectrum disorder and violent
aggression. I understand that some enterprising attorneys have tried to get
their clients acquitted on felony charges on the grounds they had Asperger’s,
but I put that in the same category as the Twinkie defense. Creative defense
strategies in criminal trials don’t give the media the right to irresponsibly
portray people on the spectrum as creepy or killers. No newspaper would dare to
suggest that someone committed murder because
that person is black, gay or Jewish, right? In fact, people with autism are
much more likely to be VICTIMS of violence than PERPETRATORS. (Duh!)
People
who look different suffer discrimination, but so do people with less visible differences, like those on the
spectrum. Robison believes that discrimination against autism now is comparable
to the way gays were viewed in 1965: “Do I tell people I’m gay? Do I tell
people I’m autistic?” In the 1970s Harvey
Milk, known as the ‘mayor of Castro Street,” begged gay men to come out of the
closet and publicly support one another. Martin Luther King spoke and led non-violent marches
on behalf of Afro-American rights; Rosa Parks refused to sit in the back of the
bus. And today most enlightened 21
st century parents don’t relegate
their children on the spectrum to life in an institution, or allow them to
tolerate insults and mockery from people who don’t understand them or
appreciate their talents.
Due to
Robison’s efforts to function in the neurotypical world, college students have
accused him of metaphorically sitting at the back of the bus. Now he realizes
that “faculty, students and people of all ages have to be able to say "I’m
autistic.’ Only then will we get acceptance.” Isn’t he starting to sound like
Harvey Milk? Robison acknowledges that
people on the spectrum—unlike other
minorities which are defined by their
ethnicity—will need help and training to fit into our culture. To fit in, people on the spectrum must feel good
enough about themselves enough to speak up.
"Isn’t it time for us to take narrative
control of our culture and how we feel about ourselves?” Robison asked his
audience at the conference. Thunderous applause was his answer.
Poor
self-image plagued Robison for much of his life, despite his success in
multiple careers. Although his luxury car service company became one of the
country’s top service centers—with Robison becoming more prosperous than many
of the customers whose Mercedes and Range BMWs he serviced—he never saw himself
has successful until recently. A few years ago, while working as Neurodiversity
Scholar at William & Mary College, Robison asked an Afro-American professor
how she’d managed to grow up with a positive self-image, despite being raised in
the South. Her answer was
revealing. In spite of bullying and
racism, her parents were able to advocate and support her by providing positive
role-models like Martin Luther King and explaining that racists were small-minded
bullies. Robison, on the other hand, (who grew up white, male and “privileged”)
did not have parents who provided support and advocacy. He was recognized for
failure and bad behavior because there was no diagnosis or understanding of
autism available at that time.
So
what’s the solution for kids growing up on the spectrum today? Robison believes that people with autism must
look to other minorities such as Afro-Americans and Jews as examples, and
follow their lead in getting a good education. In the same way that colleges
have programs with Afro-American Studies, and Jewish people have a long history
of promoting scholarship and education, people with autism must also create a
positive culture with strong leaders and heroes. According to Robison, there
are more autistic people than Jews in the US.
“Imagine
if we could command the same respect as other minorities. . . .” Robison
challenged the audience, filled with people on the spectrum and their parents.
“Who are the heroes and leaders in the autistic world? Our kids need to know autistic leaders and
role models. As parents, the greatest
gift we can give them is a powerful sense of culture. If we have that, kids
will know name-calling and bullying is mean and small. We must
build it! No one else builds a culture for a group except the group
itself.”
As I applauded, I couldn’t help
thinking that Robison was one of those heroes.
I was sorry I hadn’t read his books or listened to him speak sooner. And
for a long, lingering moment, I wished Sarah could have attended this
conference and heard his speech. Soon
after I realized that she probably wouldn’t have understood his concepts, his
eloquence or the inspiration that he offers to so many young adults on the
spectrum. Maybe if she’d learned about
Robison (along with Temple Grandin and others) growing up in school, it would
have helped her see her own disabilities in a different light, but Sarah was born too soon for that kind of education. On the other hand, Henry and I have always believed
in and advocated for Sarah. Our whole
family, including her twin brother, did our best to defend her from bullies and
negative people.
Until
she graduated from Pace last May, Sarah seemed to have a Teflon ego. Unable to find work or recapture the
protective and “neurotypical” structure she enjoyed in school, Sarah has become
less bubbly and enthusiastic. No matter how many times Henry and I tell her we
are proud of her, she doesn’t believe us anymore. Worst of all, she no longer seems proud of herself.
But at
least there’s a glimmer of hope for Sarah.
The short film, “Keep the Change” (Columbia University’s 2013 “Best
Film” in which she co-starred) will probably be made into a full-length feature
this summer. (See "Sarah's Next Fifteen Minutes, 5/30/14 and www.facebook.com/keepthechangefilm). Oh
yes, and “Keep the Change” was shown during lunch at the Adelphi conference. Although Sarah had plans with friends, she
was very excited to learn we went to see “her” movie at the conference.
“Was my
performance fabulous and wonderful?” She asks for the umpteenth time, smiling
with glee. “I can’t wait to be in the full-length feature!” Her eyes light up
for a moment.
“Me
too.” My voice matches her enthusiasm. I yearn for the day my daughter regains
her pride and positive-self-image. Sarah
will probably never be a hero or super articulate spokesperson for people on
the spectrum. Yet her appearance in
“Keep the Change” can educate neurotypical people and help them see that young
adults with autism are capable of love and empathy. Some people on the spectrum—like my
daughter—have beautiful singing voices and can be actors too. I’m hoping that one of these days the
uber-competitive and cut-throat entertainment industry will begin to embrace
more performers with autism. In the
meantime, Sarah can continue to be a trailblazer, leading the way for others on
the spectrum in her own Sarah-way. I’m proud of her for all of her hard-won
accomplishments and always will be. Sarah, I hope you’re reading this.
Labels: AHANY, Asperger's Syndrome, autism, baby boomers. Adelphi University, blacks, civil rights, disabilities, discrimination, gays, Harvey Milk, Jews, John Robison, Martin Luther King, millennials, neurodiversity, twins
