As the mother of a 26-year old daughter on the autism spectrum, I often feel like a tightrope walker, performing an impossible balancing act with no safety net. When I talk to Samantha about managing the details of her life (grooming, refilling prescriptions, appropriate communication), I’m just another an autism mom pioneering new territory with my daughter. If I say too much—offer an “unnecessary” reminder or constructive feedback—Samantha sometimes gets upset. She may regress into adolescence or perseverate on what she thinks I should say or do (instead of whatever I did). She likes to accuse me of “infantilizing” her—a favorite polysyllabic word appropriated from her Aspie boyfriend. I find myself in the peculiar (and uncomfortable) position of being blamed when things go wrong in her life. From Samantha’s perspective, I either failed to help her prevent an unwanted experience or else I’m a helicopter mom, offering unnecessary and unwanted assistance. What’s an autism mom to do?
Finding the middle ground is not so “easy-peasy,” as Samantha likes to say. My daughter yearns for the full independence of a neurotypical young adult, including a fair opportunity to seek meaningful paid employment, her own apartment (however small), and a lasting romantic relationship. While Samantha flourishes in a three-year relationship with her boyfriend, paid employment still eludes both of them—even though Samantha is an honors college graduate, and her significant other has a master’s degree! Like 85% of young adults on the spectrum, they are unemployed and cannot afford an apartment. Sadly, neither we nor her boyfriend’s parents can afford to subsidize adult apartments for them either. Living in New York City means only the wealthiest parents can afford to rent or buy even a small apartment in a safe neighborhood.
What does it mean to be a young adult (with or without autism) anyway? Obviously, the meaning will be different for every parent, depending on the level of functioning of each family’s sons and daughters. Transitioning to adulthood in today’s world is challenging enough for most neurotypical millennials, many of whom move back home because they need to switch careers or can’t quite “find themselves.” If anxiety over becoming an adult is overwhelming for neurotypical young adults, can you imagine what it’s like for the neuro-atypical (and their parents)? Answer: Exponentially worse.
Looking for some relief from “transition anxiety,” I went to a seminar designed to help parents whose adolescent and young adult offspring are suffering from “failure to launch” because of paralyzing anxiety. The room was packed with parents, some of whom I recognized from my support group for parents of adults with disabilities. All of us were hoping for ideas and solutions that would help alleviate our stress. Unfortunately, the two psychologists who gave the presentation offered only general information and explanations about how behavior is influenced—both positively and negatively—by anxiety. For the first hour and fifteen minutes, they showed graphs and talked a bit about the role of Cognitive Behavioral Therapy (CBT) in alleviating anxiety. I learned nothing I didn’t already know, and left before I started snoring.
Complicating the issue further is the fact that many young adults with autism function quite well on their own in some areas of life, while functioning only so-so in other areas, and just terribly in others. Samantha can navigate on her own via subway or bus beautifully throughout New York City and can find her way to parts of Brooklyn where I’d probably get lost. She is a good time manager and is always punctual. Independent grooming and presentation, however, are still “a work in progress” as Samantha would say—better than so-so, but not wonderful or consistent. Occasionally, my daughter still goes out wearing ripped pantyhose, a backward or inside-out dress, and hair that’s not quite properly brushed (unless I’m around to intervene). She does take care of her own laundry, shower daily, and make doctor appointments independently; she goes for routine visits to the dentist, gynecologist and internist on her own. As for refilling and taking her prescription drugs, she’s improved tremendously. I’d say she’s 90 – 95% reliable (which isn’t good enough for birth control….). But so far, we’ve been lucky.
What’s next? Samantha has just lived a dream come true. My daughter played the lead female role in Keep the Change, a film that won Best Narrative Feature at the recent Tribeca Film Festival. Samantha was even nominated for Best Actress! She and the film have received rave reviews in the New York Times, LA Times, Variety, among others. IndieWire even called Samantha “the standout” performer in the film. While my daughter can often behave childishly or inappropriately in real life, she gave an amazingly natural and subtle performance as an adult with disabilities. All of the press attention has offered her and others in the film the possibility of a career in acting. Yes, acting for a person on the spectrum is NOT a crazy or impossible idea, especially if the actor on the spectrum is playing a character with autism. In fact, everyone in the cast of Keep the Change played their roles with greater authenticity and power than any neurotypical actors could have done.
But success can be a scary and overwhelming proposition (although, of course, feeling giddy and overjoyed is far preferable to the despair and frustration that accompanies the usual invisibility and exclusion suffered by most young adults on the spectrum). While Samantha is basking in the glory of her Tribeca success, she’s flooded with anxiety and so am I. l know how lucky she is to have had the unparalleled opportunity to play a sympathetic and endearing character on the spectrum, instead of one of the 100 neurotypical actresses who auditioned. I’m hoping—and so is Samantha—that this is the first and not the last of her professional performance opportunities. Could she become the Marlee Matlin of autism as I fantasized a few years ago when she appeared in the award-winning short version of Keep the Change? The possibility seems tantalizingly close…
I don’t know much about Hollywood, except that it’s notoriously fickle. Many neurotypical actors either never make it, or crash and burn after one movie. Also, because of Samantha’s autism, I’m the one who must manage the details of pursuing an acting career (at least for the moment). Finding the right agent, getting headshots, navigating on-line auditions, making a reel—that responsibility is all mine—at least for now, and we MUST “strike while the iron is hot.” I don’t want to be a “momager” like Kim Kardashian’s mother Kris Jenner. At the same time, I’m longing to see Samantha’s dream of becoming an independent adult come true. Sometimes I hope so hard it takes my breath away. I want Samantha to keep on flying, not just out of her family nest, but spreading her wings into the neurotypical world of movies and theater, aiming higher than most people with autism yet dare to imagine.