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 100th 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 21st 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
"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.