Tsunami, Adult-ASD, Biogenetics, Falling-Off-the-Cliff, Sustainable Housing, Respect, Hope
Words I heard repeatedly this week at the Southwest Autism Research and Resource Center still echo in my busy mind.
Did you know that 80% of individuals with ASD are under the age of 18? 90% of young adults with ASD are not employed or are underemployed. 34% of ASD young adults out of high school have NO engagement in the community, including work, career counseling, further education, and vocational training. 40% receive no services post high school education, including case management, mental health support, medical and speech.
How does Autism unfold across the lifespan?
This question was asked in many different ways, and the answer was always the same: We don’t know. But we need to, quickly, as a half million people with ASD’s will soon be adults.
Thomas Insel, the Director of the National Institute of Mental Health (NIMH) joined us for dinner at the Bosco’s beautiful home. He had flown in late, directly from a meeting at the White House where various invested parties discussed Autism. President Obama convened this group because he knows personally how autism affects families and how it is quickly overwhelming the nation’s ability to respond effectively. This is the first time, according to Dr. Insel, that a president has called attention to Autism. The key words Dr. Insel conveyed were “hurry” and “hope.”
Lucy Hawking, daughter of Stephen Hawking and mother to a son with Autism, spoke about her year in Arizona. She shared how she would not have been able to teach for a year at ASU without the support and services provided by SARRC for her son. Her life as a mother of a child with autism, and a father with ALS, (lightening struck twice, she said) had taken her on a different life journey that the one she imagined. The key words I heard were “life” and “journey.”
Doctors Insel, Smith, Openden and Melmed spoke about the necessity of research which is based on the core symptoms of ASD disorders. This is different than the view I am used to hearing and reading about ASD research. Usually, medical and clinical research focuses on prevention and cure. The key words to the SARRC research team are “core” and “symptoms.”
Denise Resnik, the little mighty powerhouse who wears many hats, including founder and lead connector for SARRC, committee member of Autism Speaks, invitee to the White House conversation and mother of a 19 year old son with Autism, closed the breakfast with a quiet passion and plea. She wanted us to remember that while much of the focus in the world of Autism is on young children with more severe symptoms, we must not forget the people like her son, who are becoming adults and who deserve to live a lifetime of meaning, opportunity and respect, as do we all. Denise emphasized “lifetime” and “opportunity.”
In the five days since I returned from Arizona, my passion to provide comprehensive services for ASD people, starting with teens and adults, has become a full time obsession. We do not have any entities similar to SARRC in California, and we should. Please contact me if you would like to join this journey.