Adolescence is an important time of growth in any young person’s life. It’s a vulnerable time, during which self-esteem can be exceedingly fragile. For teens with AS, HFA or PDD, the quality of support and education they receive during this formative period can make or break future success as an adult, be it on the job, in relationships, or in independent living. While more and more young Aspies (a term coined by Asperger self-advocates) have access to crucial social skills curricula and practice of social skills in schools, opportunities for building self-advocacy skills are scarce.
Self-advocacy is a life-long endeavor, and the teen years offer a particularly fruitful moment for cultivating self-awareness, self-monitoring, and deeper exploration of what it means to be autistic, by way of peer discussion groups. Self-advocacy differs from advocacy in that the individual with the disability self-assesses a situation or problem, then speaks for his or her own needs. Learning how to do this takes practice and direct instruction. Too often, we raise our kids, treat our patients, and educate our students without ever speaking to them directly about autism. Perhaps we’ve made assumptions or even harbor fears that they aren’t capable of self-reflection. Yet if we deny kids this very important aspect of identity, we limit their ability to become the successful adults we want them to be. As with any academic subject, teaching self-advocacy takes training as well as knowledge of and respect for the disability movement. Parents can model self-advocacy at home, teachers can offer curricula in school, and most importantly, peers on the autism spectrum can offer strategies for good living and share mutual experiences.
I’d like to talk a moment about these fellow-travelers on the spectrum. Increasingly, adults with AS and HFA are coming together with the recognition that autism is not only a medical, neurological or psychiatric condition, but that it is a way of life possessing a particular culture and history. Many peer support organizations run by autistic people for autistic people began springing up in small pockets around the country in the mid 1990s, around the same time that AS was first included in the DSM IV (Diagnostic & Statistical Manual).
The first known peer support group, AGUA, was founded by Jerry Newport in Los Angeles, where he also met his future wife, Mary Newport. Soon thereafter the couple became important voices in the self-advocacy movement, authoring two books that offer important insights and advice on learning many adult life skills. In San Francisco, Adam Pollack developed the AUTASTICS. Here in New York State there is Autism Network International, based in Syracuse, which hosts a retreat each summer in the Adirondacks, offering conference workshops presented by and for folks on the spectrum. Finally, there is GRASP, a new non-profit in New York City, directed by Michael John Carley, that is about to launch a major campaign of setting up peer support groups across the nation, conducting a large scale outreach campaign to educate the general public about Asperger’s syndrome, and offering a list of speakers who can visit communities, institutions and schools as a means of modeling successful adult living. GRASP is also putting together a database and referral list of professionals, schools, and services that pass standards developed by folks on the spectrum.
At ASPIE, we have culled information from many of the sources I’ve mentioned here to create a self-advocacy curriculum for our students. Some of our kids weren’t aware of their diagnosis until very recently. Others have known for years, though they really haven’t had the opportunity to learn what autism or Asperger’s Syndrome is. At ASPIE, they are now beginning to get a good working knowledge of autism’s medical and psychiatric history, and they’re learning about important role models, both living and dead, from Albert Einstein to Andy Warhol to Temple Grandin. They also have the opportunity to speak about their strengths and about the challenges they face, and to share difficult, often traumatic experiences from the past, which they had no previous opportunity to discuss with peers. This process can carry a fragile teen from a place of shame and fear about his or her difference, into a more powerful position of self-knowledge, self-expression and the confidence everyone needs for a successful adult life.
To give a few examples: Students at ASPIE have been learning and discussing key terms like “perseveration,” “eye contact,” and “sensory sensitivities.” With time and practice, they have begun to have words for experiences they often didn’t understand in the past. Important self-advocacy concepts, such as neurotypicality and self-disclosure, are also explored in a safe, confidential group setting. Our students are beginning to see that, along with their parents and professionals in the autism field, they too have a perspective on their own lives, and one day they will be “experts” on themselves! In essence, they are practicing crucial skills that are the foundation for future success in employment and living situations.
In addition to the examples I’ve mentioned, our self-advocacy curriculum at ASPIE features:
- Adults on the autism spectrum regularly visit ASPIE to meet with kids and share life stories, and to meet with parents and staff for training and development.
- Our therapeutic staff conduct sensory profile questionnaires to help kids learn self-monitoring skills.
- Students are preparing to attend their own special education planning meetings.
- attending autism society meetings and conferences
- future topics: self-advocating for services, introduction to self run organizations, ADA (Americans with Disabilities Act), history of the disability movement, etc.