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Chantal Sicile-Kira Headshot

Thoughts on World Autism Awareness Day

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When I was first given a diagnosis for my autistic son Jeremy, I was told to find a good institution for him. I don't think the French doctor meant the United Nations, but that is where Jeremy now serves as one of the youth representatives for the Autism Research Institute, a non-governmental organization. Quite fitting actually, as Jeremy was brought up in three different countries and understands French, long considered the international language of diplomacy.

Jeremy has come a long way since that day in Paris 20 years ago when I was told that if I was lucky I would find a good place for him, and I could get on with my life. As if I could just park my kid somewhere and forget he existed. Little did the diagnostician know that I had spent two years helping to prepare severely developmentally-delayed youths for deinstitutionalization from California state hospitals. We taught them self-help skills and community living skills so they could live in their own neighborhood, thanks to the passage of the Lanterman Act.

April is Autism Awareness month -- or Autism Action month or IAAM Hope month , as other organizations put it -- and everyone in the autism community is encouraged to light it up blue. I'm happy that society is recognizing autism in all its forms -- the positives as well as the negatives.

Jeremy has accomplished so much, including co-authoring a book -- due to his desire to have a life worth living and thanks to an army of people who, since he was young, have tried to reach him and teach him. Now, as a young adult, he is more responsible for his life, but he struggles with high anxiety and PTSD like many on the spectrum. Life is not easy for him. Despite his attempts to be more independent, he has difficulty with even the most routine of daily living skills we all take for granted due to his motor planning and sensory processing challenges. Yet he continues to learn and progress and become more independent.

Recently, Jeremy discovered painting. He has always enjoyed looking at paintings and colorful images, but did not show much interest in creating art when given the opportunity. Then, this summer he began to type out dreams that he was having about painting. In September, he started painting his dreams. This has become a creative outlet for him, which he really enjoys, especially since people are offering him money in exchange for his artwork. The thought of painting puts a smile on his face. And isn't that what all parents live for -- to see their children happy?

Painting has also created a way to connect with other people, which is truly wonderful when you have little verbal conversation skills and need assistive technology in order to communicate. People love art, and it connects everyone, no matter where they are on the spectrum of life.

Painting is another fun way to spend time with his sister Rebecca when she is back on her breaks from college. It's not always easy for siblings to connect or find an activity to enjoy together. Last week they painted their second painting together, one of his latest dreams:

Painting With Rebecca

I greatly dreamt I painted the aura of beautiful Rebecca while painting with me. It was green for the calm I feel near her and yellow for the happiness I feel in her presence. Teal represents the justly realization of universal connection with each other. Pink is for the love we have as siblings. Red is for the anxiety I feel at her departure. Justly I love painting with her.

On March 30, Jeremy had a booth at the resource fair of the NFAR San Diego Race for Autism. He displayed his paintings and the book he co-authored. Parents of young children with autism stopped and admired his work. A few said it was great to see someone like him there; it gave them hope for their children. One mom shared that her 13-year-old was non-verbal and did not have a communication system that worked for him. I told her that Jeremy did not start typing till he was 14, and that it took a long time. Jeremy typed her a message: "Never give up."

Never giving up and being open to the possibilities that come our way and Jeremy's way is how we live. We look for ways to connect and to give back. We are grateful to our community and society's increasing acceptance and understanding of those who are differently-abled. Yet, for Jeremy, making friends and connecting to others still remains the most difficult challenge.

Deepak Chopra explains: "Through isolation we wither, but in community we collectively experience a deep sense of belonging, purpose, and joy."

Or, as Jeremy put it in a statement he prepared to be read by Valerie Paradiz, Ph.D. (director, Autistic Global Initiative of the Autism Research Institute) as part of a presentation at the United Nations on World Autism Awareness Day:

Realize the importance of community. Truly we need more people to connect with besides paid service providers and family members. It is hard to initiate contact for many of us ... We all need more friends. We may look like we are not interested due to our lack of eye contact. It is hard for us to initiate friendships as well. Kindly this is due to motor differences or anxiety for many. Kindly we really want love.

For more by Chantal Sicile-Kira, click here.

For more on autism, click here.