For Adults with Autism, Just Like the Rest of Us, Community Is a Many-Layered Thing
By Irma Velasquez
Soon after my 60th birthday, I became more sensitive to the truth of my mortality. The question my father asked me days before he died kept echoing in my head: “What will happen to Aaron when you’re gone?”
My son Aaron is 23, nonverbal and autistic. When I am gone, he will need a home, a constant stream of supports, and a community that cares about him and for him .
"Home and community" are hot topics in autism today, as federal policy threatens to sharply restrict congregate options where adults like my son can live and receive services. But for Aaron and many with severe disabilities his, “community” is a many-layered thing. Just living in a solitary apartment or home with a caregiver, is not community.
The first layer is personal space. For Aaron it starts with small and private spaces. He has claimed two rooms in our house, his bedroom and a room we call the library. His bedroom is the place he retreats to when he senses the onset of a seizure. It’s there where he cuddles under a blanket with his iPad or a book and where he finds a quiet place away from unfamiliar visitors. The library is a small room lined by bookshelves. Aaron has a mysterious connection with books, one that only he understands. He signals his need for privacy by closing the door, sometimes leaving just a crack open, other times the door is firmly closed, depending on his mood. When he’s wants company, he gestures “come on in.” It’s his place. The place where he goes when he feels like listening to music, be with his books or just to be alone.
The next layer is the micro-community of family, friends and helpers that share Aaron’s life. During dinner parties Aaron circles the table several times, observing the guests as they pour red wine into their glasses or reach for another bowl of rice. He smiles and sometimes claps. When friends visit, he greets them with a clap and sometimes a hug. While Aaron loves his quiet spaces he also thrives around company and a likes a social whirl. He is part of a larger world with the energy and nourishment of social contact; where he is accepted and can be himself. This layer of community is crucial: studies show that social and emotional support is a significant predictor of better cognitive function and a protector of functional decline as one ages. This is as true for Aaron as it is for the rest of us.
The third layer of community is the macro-community hubbub and activity of the world outside, with strangers and community institutions like schools, employers, parks, shopping centers, coffee shops and the Y. I have always cherished engagement with community. I'm reminded of the time when I was in my late 20's and lived in San Francisco. I chose my apartment on Russian Hill because of it's many attractions. It was a convenient distance to work, the health food store was visible from my cozy studio window and the smell of my favorite restaurants on North Beach and Chinatown was ever present. It was also a place where my friends, local and foreign, were eager to visit. El Salvador was home for me during the first ten years of my life. Our house was busy with daily visits from grandmothers, aunts, cousins and neighbors. They came to share the latest gossip, to bring a basket of avocados picked from their back yard or just to sip a cool glass of agua fresca. In both places, I had community at all levels.
A few years ago I met Larry and Betsy Grotte, the parents of a son with special needs, who asked me the “after you’re gone” question. I could no longer place the topic on the shelf hoping that the answer would jump out at me. Peter, Larry and Betsy's son, is non-verbal with a long list of disabilities. In the process of discussing a solution to our mutual quandary Betsy, Larry, Sherman (my husband) and I began to design home for our sons, where they would live and enjoy the warmth of a true community after we are no longer on this earth; we called this community Rident Park.
As we plan Rident Park, we intentionally take the multi-layered approach: private spaces and homes, opportunities for social engagement with a broader group of friends, supporters and caregivers in a safe enclave environment, and ample everyday access to the riches of the local community at large. It’s an arrangement I think all people want, but for those with severe disabilities who lack ability to create their own micro-communities or interact on their own in the macro-community, intentionality of design and operation is imperative.
For adults like our sons, there is no one simple answer or approach. As we plan for their individual needs, we hope all families will ask questions and seek answers that will meet all layers of needs for their adult children. We must build communities that are structured to provide care, love, support, and health y alternatives. All adults with disabilities deserve to live in an enriched community through their lifespan.