When April is over, what happens to autism awareness for the rest of the year? Answer: not all that much. As an autism mom, I always learn a lot each year from my participation in myriad autism conferences and events during the month of April. Often I’m inspired by speakers with autism; I’m always impressed by their honesty and courage, especially given their various communication challenges. In fact, I find some speakers with autism livelier and more informative than the neurotypical experts and support people who are trying to help them.
As most of my readers know, Autism Awareness Month started out for me with Samantha speaking for the SECOND time at the United Nations World Autism Awareness Day on April 3rd. The following week my daughter (class of ‘14) appeared at Pace University for a screening of Keep the Change), where she and director Rachel Israel received an honorarium for appearing at the Q and A. On April 23rd, EPIC Players hosted its best ever Cabaret fundraiser – Songs from the Spectrum, where the company surpassed its financial goals, and a good time was had by all. Adelphi University—which hosts many autism events throughout April—also generously included a benefit performance of EPIC Players for it Bridges Program Talent Show on April 25th.
Spilling over into May 2nd, was a cocktail fund raiser for GRASP (Global and Regional Asperger Syndrome Partnership), another non-profit providing support programs and education for people with autism. At GRASP I had the pleasure of hearing my friend Jesse Saperstein speak about the ups and downs of his employment experiences. Emanuel Frowner, (who performed with Samantha in Keep the Change) shared his perspective on what it feels like to be a minority on the spectrum. The final speaker, Amy Gravino, (who had hosted a KTC screening in Paramus) talked about sexuality and the challenges of romantic relationships for those on the autism spectrum. All of the speakers at GRASP brought passion, conviction and even some humor to their speeches. As an autism mom, it’s uplifting to hear other adults (in addition to my daughter) sharing their voices and experiences with the world. The gratitude of these speakers toward any audience composed of interested and respectful listeners is palpable. Unlike neurotypical speakers, people on the spectrum cannot take for granted that they will have ANY audience, let alone one that is respectful and empathetic.
Finally, on May 4th, EPIC Players appeared at AHA’s autism conference “Improving Communications Strategies for Individuals with Autism.” Executive Director Aubrie Therrien described EPIC’s goals of pioneering increased inclusion in theater arts, breaking though social barriers and stereotypes. Her short slide show demonstrated the depressingly small number of actors on the spectrum who are cast in the entertainment industry, even to play characters on the spectrum! To erase all doubt that actors with autism can act and entertain as well (or maybe better) than neurotypical performers, Samantha and other EPIC cast members sang a rousing rendition of (“Don’t Be the Plant”) from their upcoming show Little Shop of Horrors June 5th – June 16th. Tickets are now on sale at www.epicplayersnyc.org.
Last but not least, I attended the New York City Regional Housing Collaborative meeting on May 7th. The title sounded sleep-inducing and depressing, but I went anyway. I’ll do anything (legal) to help my 28 year-old daughter with autism live independently or with minimal support in a safe affordable home in Manhattan. How could I not attend a meeting whose stated purpose is to help people like me and Samantha figure out where young adults with autism can live and what resources exist to help them? After all, the dark cloud that hangs over all aging autism parents is: what will happen to our adult kids when we are gone?
To find solutions, developers, realtor, architects, landlords and benefit professionals must all come together, we were told. A seemingly impossible task. I listened to more depressing statistics about the 250,000 people seeking housing. I listened to discussion of 80/20 housing, lotteries, and ISS housing subsidies. Honestly, I walked out with some possibly useful business cards and the unwavering conclusion that I’m a pioneer parent (again) who must somehow figure out how to help my daughter without waiting for housing professionals to come together for a eureka moment (or even partial solution).
There was one ray of hope in the housing situation. I made an appointment with a “housing ambassador” who will supposedly help me understand and access the limited housing choices that currently exist. The housing ambassador promised to explain Samantha’s eligibility options, given her limited income, Self-Direction funds, and Social Security payments. Wish me luck!