Friday, July 31, 2015

Overcrowded Prisons – Nightmare Nests

   Did you know that America has by far the highest incarceration rate of any Western nation, with 750 humans in jail per 100,000 people?  If that statistic isn’t horrifying enough, consider the fact that over 50% of inmates are in federal prison for drug crimes (many of which are relatively minor).  Regardless of whether you’re a baby boomer, a millennial, or from an in-between generation, I bet there are LOADS of Americans who experimented with drugs.  How many people can honestly say they DIDN’T smoke pot as a teenager? I’m guessing there are also a significant number who snorted cocaine, swallowed speed to study or finish a paper, or popped a Quaalude at some time in their lives.  Most of us were lucky enough to avoid prison and grew up to be law-abiding, tax paying adults who contribute to society in myriad ways. But what about all of the unlucky people who committed similar minor offenses and ended up in prison for up to 20 years simply because they were in the wrong place at the wrong time, belonged to a racial minority, or lacked the funds to hire a good attorney?  Many of these drug offenders are teenagers and young adults who have NOT enjoyed the benefits of a nurturing family nest, and have instead suffered inside over-crowded prison cells with two or three inmates bunking together in claustrophobically small spaces, such as solitary confinement. Oh, you thought solitary confinement was solitary? Not necessarily, with jail crowding there can be as many as three prisoners sharing the same solitary confinement cell.
     With these scary statistics in mind—and with a push from President Obama—it seems that conservative and liberal politicians are finally coming together to reverse the sentencing laws of the 1970s and ‘80s. (See “Bi-Partisan Push Builds to Relax Sentencing Laws,” The New York Times, 7/29/15).  Currently under debate by Congress is whether to dramatically change sentences—including a reduction of mandatory minimum sentences—or seek early release and services behind bars, or some combination of  these changes. Even conservative Republican John Boehner has endorsed a bill that would change the criminal justice system. “I’ve long believed there needed to be reform,” Mr. Boehner stated. “We’ve got a lot of people in prison, frankly, that don’t really in my view need to be there.  It’s expensive to house. Some of these people are in there for what I’ll call flimsy reasons.” Amen!
     The cost of incarcerating one inmate in states like Connecticut, Washington and New York is anywhere from $50,000 – $60,000, according a report by the organization, “The Price of Prisons.” That $60,000 could pay the salary of a teacher or firefighter, or maybe provide well-deserved raises to the best and most qualified of these civil servants.  Instead our epidemic of incarceration costs taxpayers $63.4 billion a year.
     Leaving housing costs aside for the moment, what about the human costs? According to a study of Chicago youth incarceration by Anna Aizer of Brown University and Joseph Doyle of MIT, young people who went to prison were 39% less likely to finish high school than others from the same neighborhood who were not incarcerated.  Even young offenders from the same neighborhood who were spared from prison were more likely to finish high school than jailed peers. While prison is supposed to deter crime, the Chicago study found that going to jail also made kids more likely to offend again. Incarcerated youth were 67% more likely to return to prison by age 25 than peers who had not gone to prison. Was the pattern similar for those involved in more serious crimes?  Aizer and Doyle found that youths who’d spent time in prison were more likely to commit “homicide, violent crime, property crime and drug crimes” than those who didn’t serve time.
     Alarmingly, adolescents are frequently sent into the criminal justice system for relatively minor offenses, in a phenomenon known as the “school-to-prison-pipeline.”  The process begins when students are forced out of school, suspended for bad behavior and sent back to their home environments and neighborhoods which may be filled with negative influences. Forced out of school (some unnecessarily), these students become stigmatized and fall behind in schoolwork, making them more likely to drop out permanently and commit crimes in their communities.

     But how is it possible for nearly 2.4 million people to be in prison, even though the crime rate has actually dropped by more than 40% over the last 20 years? Why are there so many prisoners?  Apparently, our country has devised a new form of slavery.  According to California Prison Focus, the private contracting of prisoners for work fosters incentives to lock people up.  Prisons depend on this income. Corporate stockholders who make money off prisoners’ work lobby for longer sentences in order to expand their workforce.  “The system feeds itself,” says a study by the Progressive Labor Party, which accuses the prison industry of being “an imitation of Nazi Germany with respect to forced slave labor and concentration camps.” (!!!) America needs to wake up and end this prison nightmare.
     What’s the solution to the current criminal justice crisis?  Instead of building more prisons, or adding more beds to existing jails, we should be investing in prevention and rehabilitation—especially for youthful offenders. Why not add more school psychologists and drug counselors to our schools and try to address the issues that lead to early crimes?  Schools in troubled neighborhoods should invite successful alumnae to address students in assembly, provide role models, and possible mentors.  Surely, most Americans would agree that investing in human potential is far more profitable, both financially and emotionally, than locking people away.
       Obama’s effort to seek changes in tough drug policies, allowing the early release of low-level, non-violent offenders is a good first step. If lawmakers can agree to cut in half the mandatory prison sentences for certain drug crimes—now set at 5, 10 and 20 years—imagine the number of lives that could be improved. Young offenders would have a chance at an education.  Incarcerated parents could go home to raise their children—the innocent and invisible victims of the current justice system.  Whenever possible, children should be living with their parents at home, not visiting them in prison.
     If children and youth are our future, we need to find ways to set them free.

Saturday, July 25, 2015

Hoping, Coping & Letting Go

     In one of my all-time favorite movies, Shawshank Redemption, Red reads a letter from his friend Andy, who escaped from prison after years of being punished for a crime he didn’t commit.  In the letter Andy says: “Hope is a good thing, maybe the best of things, and no good thing ever dies.” The letter encourages Red (if he’s ever released from jail) to join his escaped friend Andy in Mexico and start a new life.  While I love the line, (and it’s very touching in the film) I’m not sure these words always ring true in real life.  While having a positive and hopeful attitude is usually better than being pessimistic, quite often bad things happen, problems don’t resolve, and staying hopeful is NOT the best way to cope.
     For example, take my husband, Henry, a lawyer, who tends to be pessimistic.  In order to defend many of his clients, he must focus on the weaknesses of a case more than the strengths, if he wants to create a winning argument.  Do you want a hopeful, optimistic lawyer, who says things are going to fine for you? Or would you prefer an attorney who worries about protecting you and digs deeply into every nook and cranny of the law? Hint: Think of Larry David’s reaction on Curb Your Enthusiasm when he learned his divorce lawyer was Swedish (instead of Jewish). “Oh no,” he lamented, “my wife’s going to get everything!”
     All of us empty-nesters try to set a positive, hopeful example for our millennial children, particularly when they go off to college.  While most kids won’t admit to being ambivalent about leaving the family nest—excited AND apprehensive—parents also have mixed feelings about letting go: pride, worry and sadness, among others.  Still, it’s much easier to be hopeful and excited about college—a kind of bridge between childhood and adulthood—than it is to remain hopeful when that young adult graduates from college and has difficulty finding a first job. Many parents have fond memories of their college years, and unhappy recollections of their first jobs (especially female baby boomers like me). For parents who happen to have a child with a disability, (like my daughter Sarah on the autistic spectrum), hope will only take you so far. Hope IS a good thing—and perhaps the best thing—when educating and treating a child with learning disabilities.  But what happens to hope after a young adult with autism graduates from college?  Sadly, my personal experience (and that of friends with kids on the spectrum) has been that hope disintegrates for both the parents and now
grown children.
     All of society’s safety nets which are supposed to assist families of young adults with disabilities are woefully inadequate.  Parents are buried in paperwork and a labyrinthine bureaucracy with government workers whom I’d like to think are well-intentioned (even if overworked, under-funded or incompetent).  There’s even a whole new language of terminology and acronyms for frustrated parents to learn: ACCES-VR (Adult Career and Continuing Education Services – Vocational Rehabilitation), OPWDD (Office for People with Developmental Disabilities), MSC (Medicaid Service Coordinator), SEMP (Supportive Employment Programs), Community Habilitation Services, etc. and the list goes on . . . .  Oddly—and mercifully—securing disability payments, Medicaid and Social Security for Sarah has been much easier and faster to do than providing her with life skills support or an actual job.  Wouldn’t it be kinder and less costly for society to offer job support and employment opportunities to people with disabilities instead of mailing them millions of dollars? Or has society abandoned all hope of creating a truly inclusive and diverse workforce?  Sarah graduated from Pace University over a year ago and still has no job, nor has she received a single hour of life skills support despite following up with months of phone calls.
     Nowadays coping substitutes for hoping.  Sarah keeps busy: with friends, the gym, her theater group, and rehearsals for her upcoming film, Keep the Change.  I’m still persevering with the various government bureaucracies. My advice to all parents of kids with disabilities is to start submitting all that paperwork for housing, job support, life skills etc. when your children are in high school. I failed to follow that friendly advice for my own daughter because I couldn’t stop HOPING that Sarah would not NEED government support. Foolishly, I hoped that somehow through maturity and continued brain plasticity Sarah would become capable of much greater independence than has turned out to be the case. In  my defense, I never believed seeking assistance for someone who truly needed it would take nearly as long as it has.                

     Sometimes coping means I must continue to advocate for Sarah and be “the squeaky wheel.” However, 24 years of advocating and “squeaking” has been exhausting (for the wheel).  Now I worry about what will happen to my daughter when Henry and I are gone.  Will her twin brother who lives on the opposite coast step in to help her in the event of a problem? Will he even know if she has a problem?  Or will he be busy navigating challenges in his own life?  I want to be hopeful, but hope—as Henry often reminds me—is not always practical or realistic.   Worrying about both of my adult children, (flown from the nest, or mostly flown, in Sarah’s case) only results in migraines, indigestion and insomnia.

     What’s the solution? Letting go, moving on, “que sera, sera.” My mother had a much easier time saying goodbye when I left the family nest than I’m having with the double separation of my twins.  I moved less than a mile away from my childhood home.  In contrast, my son moved to the west coast, while my daughter is halfway out the door without a job. For me, what’s hardest is taking my mother’s advice, a quote from John Milton’s sonnet on blindness: “They also serve who only stand and wait.” Thanks, Mom. I hope you’re right…

Thursday, July 16, 2015

Red Light, Green Light & Marlee Matlin

     Remember the child’s game, Red Light, Green Light?  A leader turns his back on a group of friends and calls out “green light;” then the kids run forward from a starting line until the leader says: “red light,” and everyone must stop. Anyone caught still moving is sent back to the starting line.  Whoever makes it to the finish line first becomes the new leader, and the game resumes. In some ways the financing of my daughter's movie, Keep the Change, has resembled an extended, adult version of Red Light,Green Light. Two years have passed since the original short film won multiple awards at film festivals and received some early financing. After that, funding stalled and the world gave it a "red light, and the project stalled far from its bare-bones financial goal/finish line.
     But not anymore!  In the past month, Keep the Change has successfully raised 100% of its $50,000 basic budget on the crowdfunding site, Seed & Spark. That means the movie project has a green light and will start shooting next month. For my daughter, Sarah, Brandon and the other cast members on the autistic spectrum, this might be a once-in-a-lifetime opportunity to step into the spotlight and show the neurotypical world what they are capable of achieving as actors and as people. For Rachel Israel, a uniquely talented and sensitive director, making the feature-length version of Keep the Change is the culmination of a five year journey—from befriending Brandon Polansky (lead actor) in college and wanting to tell his “looking-for-love-when-you-have-autism” story, to casting my daughter as the female lead, after auditioning 100 neurotypical actresses during her last semester at Columbia University’s film school.  Hurrah for the determined director, eager cast and devoted crew!

     Over a thousand people either supported or contributed to “green lighting” Keep the Change—too many to thank individually in a single post (!!!)  To all the people on Facebook, Twitter and social media who felt moved to support the project, I offer my deepest appreciation, because without YOU, the film’s crowdfunding campaign would not have been successful.  Of course my biggest “thank you” goes out to my friends and family who gave generously with their dollars, time or both: Robin Reinach, Andrew Cohen, Michael Cohen, Gail Cohen, Lisa & Barry West, Paula Dennis, Anne D’Innocenzio  and (of course) my husband, Henry, who gently twisted a few arms.
     It’s not too late to donate! There’s still one day left (till midnight Friday, July 16th) to add flesh and muscle to the movie.Keep the Change has made it to the critical $50,000 finish line, which covers principal photography with a skeleton crew and meetings with VIP investors. What would happen if they collected $75,000? That would pay for full equipment, full crew and complete photography. How about $100,000?  Principal photography with a full crew and initial post-production costs would be covered.  We might as well shoot for it, right?
     Up until recent years, movie characters with disabilities were mostly depicted as villains—like Captain Hook and Quasimodo—who were angered by their limitations and wanted to retaliate against society.  In 1988—two years before my daughter was born on the spectrum—Dustin Hoffman starred in Rain Man, playing an autistic savant, who was brilliant at numbers and counting cards, but severely disabled and living in a mental institution.  Rain Man won four Oscars (including Best Picture and Best Actor), however, I believe it greatly stereotyped and misrepresented the vast majority of people on the autistic spectrum (including my daughter).  Although progress has been made in the diagnosis and treatment of people on the autistic spectrum, many neurotypical people still fail to understand or appreciate the mix of strengths and weaknesses found in individuals with autism.  It’s my profound hope that films like Keep the Change will help to educate neurotypical audiences about the different perspectives of people with autism. Maybe just maybe the world will be a little bit kinder and more accepting of people like Sarah and Brandon, if neurotypicals can step into their shoes for an hour or two.
     Until that time, we must rely on celebrity spokespeople, like deaf actress Marlee Matlin, who recently addressed the ACLU to advance the rights of all people with disabilities and break stereotypes. Matlin’s work in film and television has earned her an Oscar and a Golden Globe among other award nominations  Who could be a better role model—not just for the deaf and hard of hearing, but for people with a variety of disabilities—than Marlee Matlin, a successful actress AND a married mother of four? In addressing a panel on People with Disabilities in Time of Economic Crisis, Matlin revealed that more people with disabilities in the U.S. experience poverty than all other minority, racial and ethnic groups combined! Further, she added, “the cost of excluding disabled people from the workplace deprives society of 2 TRILLION dollars in annual losses.” (!!!) With a wry smile, she concluded: “Though some people may think I live in a world of silence, silence is the last thing the world will ever hear from me.” Go Marlee and my Sarah too!
     Let’s help give Keep the Change the best and biggest chance it can have to change people’s minds and hearts about people with disabilities. As Marlee Matlin says: “Every one of us is different, but for those of us who are more different, we have to convince the less different that we can do the same things, just differently.”


Friday, July 10, 2015

Growing Old, Staying Young, and a Box of Rain

   Aside from plastic surgery and Botox, how can we grow old gracefully if we’re lucky enough to stay healthy and remain on the planet?  For me and many other baby boomers in our 50s and 60s, this is a burning question.  First we raised our children and watched them depart the nest one by one (although these days some boomerang back home).  Then somewhere along the way, we noticed how old our own parents had become, or we lost a parent to the inevitable tides of time.  In between care-taking our surviving elderly parents and launching our young adults, it eventually becomes impossible NOT to see our own wrinkles and loose skin, to feel the wear and tear on our muscles and joints of half a century of life.  If your mom or dad had arthritis, a bad back, or hip replacement, you don’t need to wonder why you’re starting to feel pain in those same body parts.
     The secret to staying young—it seems to me—is to be a rock star (or to act like one).  Sometimes I think that bands like today's  Rolling Stones are an optical illusion. I first saw Mick Jagger when I was 18 years old; I saw him perform again in my early 50s, awed by how amazing and energetic he was on stage.  It's hard to believe that Jagger is 71 (!!) and still doing concerts in full strut and cardio mode.  Of course when you look at Keith Richards (also 71), I marvel that he's still alive— let alone strumming up on stage--because he looks like a centenarian.  And what about Paul McCartney, 69, who’s on his third, very youthful wife? He’s still crooning away, playing piano and performing at concerts. Ditto for Rod Stewart 70, Elton John, 68, and Billy Joel, 66. Yes, all of these musicians LOOK older (and maybe some  have lost a beat), but they are still bright stars in the baby boomer firmament.  Maybe the trick really is to "keep on trucking" a swell as you can for as long as you can,(while avoiding mirrors).
     But sometimes we have to stop moving—at least for a few days—long enough to repair or replace a worn out part.  For example, my husband, Henry had arthroscopic hip surgery on Thursday and was back in his law office, meeting with clients on Monday, crutches and all.  He wouldn’t take a single pain-killer because he didn’t want to fog his brain. His only concession to surgery was insisting that the client travel to his office (instead of visa versa). Doctor’s orders were for my husband to “keep his leg elevated and rest.”   Always restless and on the move,  Henry often reminds me of  a race car at the Indy 500, stopping only long enough to replace his  blown tire, before revving up to 100 miles per hour again.   Henry’s supposed to stay on crutches for a month, but I’ve already caught him hopping a short distance or impatiently grabbing just one crutch, despite the doctor’s orders.  

     To be fair, Henry did allow me to gently put a pair of socks onto his feet just 72 hours after surgery.   The act made think of how many years had passed (could it really be 20?) since I pulled socks onto my twins’ tiny, kicking feet.  In some ways, reminders like that make me feel older than looking in a mirror.
     Even for rock stars, there comes a time to slow down. On July 5th, 2015, the Grateful Dead performed their last show ever, in Chicago. According to the Rolling Stone, the Dead ended a 50 year career with a “magnificent and moving final show.” Phil Lesh, 75, The Grateful Dead’s de facto leader since Jerry Garcia’s death, came back on stage at the end of the concert to thank the audience for listening and to encourage organ donation. (Lesh received a liver donation in 1978.) Amid hugs, bows and tears, 70,000 Dead heads departed Soldiers’ Field in an uplifted state, awash in the music that defined the Utopian dream of a past era: the hippie vision of peace, love, and the idealism of our long lost youth. 
     “The feeling we have here today—take it home with you and do some good with it,” Drummer Michael Hart, 71, advised the crowd. 
     That’s great advice for empty nesters, who may be starting to feel old, or miss the good old days (?) I’d like to add a suggestion of my own: turn a page in the book of YOUR life, and write the next chapter. If that means replacing a hip or a knee,  getting a few Botox injections, or just slowing down  long enough to notice the shape of clouds and the color of  our sky, take a break.  But be sure to keep moving and carry the past forward—or to quote the Grateful Dead, keep seeking “all that’s still unsung.”

Friday, July 3, 2015

The New Normal - Is Neurodiversity Next?

     Last week the Supreme Court voted 5 to 4 to legalize same sex marriage, granting homosexuals multiple civil rights that heterosexuals have enjoyed since the United States declared independence from Great Britain.  Finally gay men and women are free to marry whomever they choose in all 50 states. The gay family nest has been legitimized—not only by TV shows like American Family—but in the real world. Think of all the changes that will unfold as a result of legitimizing love between same gender couples:  ease of adoption, marital privileges upon illness and death, including hospital visitation, burial rites, estate planning and much more.  Children raised by gay parents will grow up alongside the offspring of hetero parents; they’ll interact in pre-school, on the playground and in college classrooms.  In one generation, the new normal can begin to replace much of the prejudice, pre-conceived and outdated beliefs about who can—and should—marry whom.
     Legalizing same sex marriages will also lead to profound changes in the quest for diversity by college admissions committees across the country.  Even at my alma mater, Vassar College—one of the most liberal of liberal arts schools—I’m betting that there will be efforts to recruit the offspring of same sex parents in the same way that students of different races, religions, income levels, and sexual orientations from all over the world are included to  honor human diversity and encourage the expression of diverse perspectives in classroom debates today. How will this inclusion change the
college culture? The effect of gay marriage on the evolution of education remains to be seen. But I can give you an example of the changes that have occurred since the late 70’s when I went to Vassar. At that time, there was no major in African Studies, but 40 years later most colleges offer that area of concentration. And whoever heard of hip-hop as a freshman English course? Yet in 2010, my son Max wrote and studied hip-hop at Vassar.
     As history books are rewritten to reflect society’s gradual acceptance of gender diversity and same sex marriage, what courses might be offered to tomorrow’s college freshmen?  Will there be classes like “The Origins of Same Sex Marriage?” Maybe Caitlyn Jenner and other transgender celebrities will become visiting professors and commencement speakers.  How wonderful it is to imagine a world where human diversity is accepted and respected (if not always embraced) in the spirit of inclusion.
     But where does that leave the neurodiversity movement?  While I’m deeply grateful that my daughter, Sarah, on the autistic spectrum had the opportunity to graduate from Pace University, I’m also deeply disappointed that she is currently languishing for (over a year now) without a job.  Academic support programs at various colleges—Mitchell, Adelphi, Manhattanville and Landmark among others—are wonderful opportunities for talented, motivated students with learning disabilities and autism to earn a college degree.  However, colleges have not yet taken the next step: incorporating students with autism into the social fabric on college campuses.

     While Pace University’s OASIS program did an excellent job of tutoring and advocating for Sarah and other students with high-functioning autism, none of these students were truly embraced or integrated by their neurotypical peers.  On the contrary, they were isolated (as if for everybody’s mutual protection?) No one even tried integrating the OASIS students with neurotypical students for any organized exchange of ideas, values and perspectives. Consider the potential mutual benefits of fostering such an integration. First, invite Temple Grandin, John Robison and other speakers to address incoming freshman on how various aspects of autism enrich the neurotypical perspective.  Second, appoint student ambassadors (with and without autism) to develop respect, patience and empathy on the part of the neurotypical students. Offer students opportunities to apply compassion in action, instead of merely giving lip service to our appreciation for the differences in others.  Neurotypical thinkers might be inspired or facilitated by ideas from the perspective of those on the spectrum. Above all, the desegregation of people on the spectrum with neurotypical folks can only lead to greater understanding and mutual benefit. That doesn’t mean this kind of program would be EASY to establish. But consider the alternative: an increasingly marginalized population of aging adults on the spectrum (who are NOT cute like little kids) and who will require a lifetime of care-taking and dependence. Do we really want to take on that challenges as a culture? Remember 1 in every 68 babies is currently born on the spectrum, and that number is rising every year.

     At Pace, the OASIS program was a big step forward, but the road to desegregation is long.. Sarah’s professors were encouraged to engage, accommodate (or at least tolerate) the minority of students with autism.  (After all, parents of kids on the spectrum are in essence paying part of the professors’ salaries—not to mention the extra tuition to the support program.)  However, Pace’s neurotypical population was (not to my knowledge) instructed or offered any incentive to include or engage ASD students in clubs or social activities.  Nor were they even invited to ASD student events. Was it a foregone conclusion that neurotypical kids wouldn’t gain from interactions with their ASD peers? The failure of colleges to integrate students on the spectrum into their neurotypical population is a missed opportunity for everyone.

     Here’s a thought: what about offering college credit or financial aid to psychology or education majors who are willing to help students like Sarah navigate social opportunities on campus?

Everyone ends up a winner. The neurotypical and the ASD student gain valuable job experience and emotional training by working with others who see the world differently; and the world benefits from college graduates with diverse perspectives and abilities who know how to interact effectively,.  After four years of living, learning and working together, maybe neurotypical grads will WANT to hire their ASD friends and fellow alums.  In addition, the students with autism will spend four years learning new social skills and perhaps be better prepared and more confident when looking for that first elusive job out of college. Perhaps then people in the neurotypical world will become partners with those on the spectrum—not only in technology, engineering and computer companies but also in the arts, entertainment and education. Such a collaboration is bound to yield yet another win—a better working world for all of us.

     Once upon a time same sex marriage seemed like a faraway dream. Isn’t it possible to imagine a world where more people worked together and pooled their talents to the betterment of everyone, where neurodiversity simply became the new normal?


Friday, June 19, 2015

A Change Worth Keeping

        Q: What do people with autism want out of life?

         A:  Love and acceptance.

      What people on the spectrum want is what EVERYONE wants: a fighting chance to succeed in life.  All parents hope their kids grow up and are able to leave the family nest—including those of us with sons and daughters on the spectrum.  In 2015 there are laws in America which are supposed to protect the rights of people with disabilities from discrimination, just as today’s laws protect people regardless of race, gender, religion or ethnicity. (In fact, this year we are supposed to be celebrating the 15th anniversary of laws guaranteeing equal opportunities to adults with disabilities).  How well—or poorly—these laws work is up for debate.  Right NOW what I care about are all the young adults on the autistic spectrum—especially my daughter  Sarah—who are wasting away on the sidelines of life because most of them lack the social and communication skills which are essential to demanding and defending their rights.

     Talking about neurodiversity—a newly minted word in our lexicon—is cheap and relatively easy.  Actually educating neurotypical people (yet another recent addition to our politically correct vocabulary) and making our society more accepting and inclusive of people with autism is far more difficult and time consuming.  So what’s the answer?

     If education is the first step, then reading books by brilliant and articulate people on the spectrum, like Temple Grandin and John Robison, makes for a great start. But sometimes a picture is worth a thousand words.  For example, take the short film, Keep the Change, a story about young adults on the spectrum trying to find love and emotional connection.  Keep the Change, (co-starring my daughter), is a 15 minute crash course on how people with autism struggle to communicate and find love.  The characters’ facial expressions and gestures—their non-verbal communications—often tell the audience far more about their feelings than when David’s jokes  fall flat, or Sarah talks about herself too much to neurotypical peers at a nightclub.
     What’s the biggest difference between a neurotypical couple and two people with autism out on a date?  After watching Keep the Change many times, it’s clear that the couple with autism can't avoid speaking their true feelings, no matter how awkward or untimely their conversation might be. In some ways Sarah and David retain the best of childhood qualities—honesty to a fault.  Whereas a neurotypical couple today might be texting other people, or speaking a small fraction of what’s in their hearts, David and Sarah say EXACTLY what they think.  Dissembling or holding back information just isn’t part of their game plan or wiring.

     Ironically, the movie begins with David, an upper-class charmer, who’s trying to hide his high-functioning autism.  Forced to attend Connections, a support group for people on the spectrum, David falls in love with Sarah, a sheltered young woman, who challenges his identity as normal.  Challenging the concept of “normal” is part of the film’s beauty.  Emotional honesty can be uncomfortable, but wouldn’t the world be a much better place if more people told the truth?
     The answer is a resounding yes, judging by the large crowd and thunderous applause at this week’s screening of Keep the Change at the JCC in Manhattan.  The screening was held to raise money to expand the film into a full length feature at the end of the summer. So far, Keep the Change has been very well- received by neurotypical audiences as well as those with autism. Not only has the film been featured in a number of film festivals, it also won “Best Film” at Columbia University’s 2013 Film Festival.  Film director Rachel Israel hosted this week’s screening as “An Evening of Inclusion” with an interview and q/a session with the cast. My daughter and the other cast members all expressed their gratitude for the opportunity through their performances to be seen and heard—for a moment anyway—not as misunderstood outsiders, but as actors “like Meryl Streep or George Clooney,” one cast member explained.

            I’d like to see these special actors have another chance to be in the spotlight instead of on the sidelines. If you agree, then I hope you’ll join me in supporting Rachel Israel, her cast and crew, by donating to the feature length version of Keep the Change.  Please go to and follow the instructions below.  You might help change the lives of people with autism by giving them a platform to show how love and truth connect ALL people in the world.  Wouldn’t that be a change worth keeping?        

Friday, June 12, 2015

Raising Baby – Roller Coaster Ride

Q. What could be more thrilling (and exhausting) than giving birth to the next generation in the form of your own flesh and blood?

A. Raising that son or daughter, of course.  

     Unlike all other creative projects, raising a baby from birth to adulthood is a 24/7 job for the first few years. After that, child rearing continues to be a demanding and unpredictable commitment; you never know what sudden needs or emergencies will spring up along the way to independent adulthood. (BTW, when does adulthood officially start these days? Honestly, with 24 year-old twins, I still can’t answer that question!) Of course, we all go about raising our  babies differently, depending on how, when and where we grew up. We all want to do better than our own parents, but the meaning of “better” varies, depending on who you ask.
     Reading John Elder Robison’s memoir, Raising Cubby,—the memoir of a father with Asperger’s Syndrome who raised a son  with Asperger’s—is both fascinating and entirely different from my own experience raising a daughter on the spectrum together with  her neurotypical twin brother.  In some ways, I couldn’t be more different than John Robison. Robison grew up in the rural South; I was raised in New York City.  He dropped out of high school at age 16 and married young, whereas I graduated  from high-school and college, and married on the older side, at age 32.  But, like many millennials today, I struggled to find my first job in publishing (not as a glorified secretary). I too strained to establish a career as a neurotypical woman in the late ‘70s participating in the move to break the glass ceiling. On the other hand, Robison—because of his brilliance in electronic skills—quickly established himself in the music business, later becoming highly successful in the automotive business, repairing and restoring high-end cars.
     The differences between Robison’s history and mine are less important  than what we share in common: the passion to protect and raise a child on the spectrum, which shines forth beautifully in his memoir, Raising Cubby.  Robison and I have each raised millennials with autism. We loved our children unconditionally and advocated for them tirelessly in the face of different-but-daunting obstacles. Does it really matter that Jack Robison (aka Cubby) was diagnosed with Asperger’s Syndrome at age 10, whereas my Sarah was labelled with Pervasive Developmental Disorder at 12 months?  Just as Robison affectionately nicknamed his son Cubby, we used to call Sarah Sweet Pea and Steamboat. Cubby struggled in school like his father, dropped out of high-school, while displaying Aspergian brilliance in chemistry (rather than electronics). Sarah managed to graduate from both high school and college, (like me) in spite of her myriad social and academic challenges.  What strikes me is that Robison was every bit as devoted, compassionate and protective of his son as I have been raising Sarah. What does that tell you about a father with Asperger’s Syndrome? It tells me that the neurotypical world has a LOT to learn about ADULTS on the spectrum. I think we owe them much more respect than they usually receive.  Despite disabilities, Robison and other parents on the spectrum are loving and competent (perhaps even more so) than many mainstream moms and dads.

     Nowhere is it more apparent that Robison is the father any son would want on his side than when Cubby is arrested for setting off explosives.  In today’s frightening post- 9/11 world, an overly ambitious DA decided to charge and prosecute Robison’s son as a felon and potential terrorist, instead of seeing him as a brilliant, precocious teen on the spectrum with a passion for chemistry.  During the excruciating time (over a year!) that passed before Cubby’s case finally came to trial, Robison noted: “Not one of the investigators said: ‘This is a really smart kid. What could we do to help him find a place where he could develop his talents? Instead, in essence they said: This is a really smart kid. What can we charge him with to put him in prison?”

     While Robison’s son was ultimately acquitted of all charges, and at age 25 Cubby is a source of tremendous pride to his father, the Robison family lived through long months of unnecessary hell. For over a year Cubby’s mother and father worried their misunderstood teenage son with Asperger’s would spend the rest of his life in prison because under-educated people in positions of power lacked the empathy, the integrity and even the curiosity to find out what was really going on. Wait! Wasn’t lack of empathy supposed to be a symptom of autism? Neurotypicals are supposed to be GOOD at empathy, right? We neurotypicals are supposed to be honoring diversity, CARING about our children, particularly the vulnerable, brilliant ones, right?

     The USA is a frightening place today. Our police are not held accountable for killing African American males in alarming numbers; young people of every color and ethnic background end up with permanent criminal records for possession of small amounts of marijuana.  In the face of such obvious callous lack of compassion or even fairness on the part of educated people in positions of power, the fact that a father and son team with Asperger’s Syndrome could emerge victorious from a neurotypical courtroom, gives me hope that one day sanity, compassion and the ability to see the truth may create a better world for our grandchildren.

     As Robison says at the end of Raising Cubby, several million young people are coming of age right now with some form of autism.  Will they find love, friendship and a productive lives?  For Cubby and for my Sarah, the possibility (the hope!) exists even today. Robison is not the only proud parent who has written a memoir about how far his child has come, despite all the ups and downs in life. I too have written such a memoir about Sarah. Hopefully, our son and daughter are the first of many young adults on the spectrum who leave the family nest, flying higher and farther than many people could ever have imagined.