Informed Compassion – Support for Asperger’s & High-Functioning Autism (AHANY)

On the second Tuesday of each month, parents of young adults with Asperger’s or high functioning autism are invited to attend a support group, led by Pat Schissel, AHA’s Executive Director and LMSW. Last year when I attended my first meeting, I was impressed that Pat was an Asperger’s mom with a young adult son on the spectrum. (Finally an expert who’d lived in my skin!) I’ve met LOADS of so-called “experts,” shrinks and clinicians over the course of my daughter’s childhood. Although some of these therapists were knowledgeable and helpful, not a single one had struggled to raise his or her own beloved child on the spectrum. There’s a  BIG difference between a trained therapist who listens, diagnoses your child, and occasionally offers advice—but has no real idea of the mixture of pain, exhaustion and relief that the “A-label” can cause— and someone like Pat.  Information is helpful, but informed compassion is everything.

I’d been meaning to go back to AHANY for the longest time, especially to bring Henry. But somehow we never got around to it until this week. Nearly two years have passed since Sarah graduated from Pace University (cum laude!), and she still has no full-time job, no vocational training program, and no official help (other than me!) with independent life skills. Sarah continues to free-fall from the supportive structure of school into, well, nothing. . . .  Despite completed mountains of paperwork and OPWDD approval for Social Security, Medicaid, 12 hours of “community habilitation,” (life skills help), and Access-VR (limited vocational help), nothing much is actually happening. The so-called Medicaid Service Coordinator (MSC) has only managed to find two life skills coaches, aka “Direct Service Providers” (DSPs); both of these “providers” have received only one week of training; neither had graduated from community college. The first DSP, a young woman lasted 5 weeks before leaving for a job that paid more than $9.43 an hour (Duh!) Sarah’s second DSP lasted 2 days, spoke with a thick accent, and didn’t bother to cancel when she missed the third session. I fired her for being irresponsible, hoping that Sarah would at least learn it’s unacceptable to skip work without calling. Since then our case worker has been apologetic, but unable to find another “qualified candidate.” As the weeks passed, I grew tired of waiting and decided to return to AHANY to see if Pat or any other autism-wise parents had suggestions on how to cut through red tape to find a reliable person with clear diction and more than a week of training.

At AHANY meetings, each parent has a chance to present his or her child’s issues to the group for suggestions and feedback.  When it was our turn, Pat directed us to New York Self Determination Coalition where I can run Sarah’s program myself with the help of a broker (instead of relying on an MSC, a DSP, and case worker). I wrote down the web address, and Pat promised to send me an article that had previously appeared in the AHANY newsletter, explaining how a self-directed program works.  While I appreciate the tip, I must confess that I’m neither hopeful nor inspired. Exhausted, impatient and resigned more accurately describe my state of mind when I focus on Sarah’s future.

What’s surprising (and in some ways reassuring) is the sense of community and relief that comes with sharing. Instead of feeling like an outsider (or outcast) in the world of neurotypical parents, at an AHANY meeting, I could bond with other autism parents and feel like an insider for an hour or two. Yet as I listened to my peers talk about their kids—all diagnosed late in their teens with Asperger’s Syndrome—I realized (again!) just how different Sarah is.  Although my daughter was diagnosed with a variety of autism labels before the age of two, Asperger’s has never been one of them. As Sarah’s labels evolved over the years, I chose to focus on how best to help her overcome challenges and develop strengths, instead of getting bogged down by her diagnosis. In contrast, the other parents in the room were reeling from the shock of new diagnoses for their almost-grown kids. These parents had more recently received the “A” label and described their children as young adults who were lonely, isolated, paralyzed by anxiety and low self-esteem, and unable to participate in a social life.

For many years I’d secretly wished that Sarah had received the “higher functioning” label of Asperger’s Syndrome because I thought she would enjoy greater respect. If only she could be at the intellectual summit of autism, no one would EVER say to her (or to me) that she “had severe learning disabilities,” was “limited,” “borderline,” or “too far behind academically to go to college.”  But after the AHANY meeting, I changed my mind. In spite of Sarah’s many challenges, she’s a fearless singer and actress who has already co-starred in the short and feature length versions of Keep the Change. In addition to a serious boyfriend, Sarah also enjoys a busy social life with many friends, and she is happier than most neurotypical people I know.

Although I’m still worried about my daughter’s future, the AHANY meeting helped me see how lucky I am that Sarah is who she is, at least for right now.