Autism Wellbeing Founder, Dr. Cyndy Hayes
Like many moms of children with autism, I have been doing my best to sprint the autism marathon. I was among the first group of parents working for autism awareness and the importance of early intervention. Now I find myself, like many of you, among those parents and other professionals advocating for quality support for adults with severe autism. There is no question, that with the right level of support, my son and your sons and daughters can live full and meaningful lives.
Moving forward, Aging with Autism, will be known as Autism Wellbeing with the focus of creating joyful lives for adults with severe autism and other Co-Morbid Severe Behavioral Disorders. We believe our new focus will allow us to better serve the most vulnerable and “invisible” adults with a Co-Morbid Severe Behavior Disorder. This population represents as many as half of the individuals on the spectrum. It includes many who are nonverbal, have complex behaviors including self injury and aggression and have historically been most at risk for institutionalization. The services and support look different for these individuals but their opportunity for joyful lives is within our grasp.
We must increase the visibility of individuals with severe autism and other Co-Morbid Severe Behavior Disorders (CSBD) and provide better support, higher quality of life, and holistic wellbeing for these individuals, their families and their caregivers.
Autism Wellbeing works not just to support the quality of life of individuals with CSBD and their families but also to support the professional dignity of their caregivers. Caregivers have challenging positions often working with individuals with complex behaviors including self injury and aggression. They are typically not trained and do not receive a living wage. As a result, there is high turnover which exacerbates the emotional vulnerability of the individual with CSBD, increases often life-threatening behaviors and seriously impacts safety and life quality. We must support and nurture this important relationship.
Autism Wellbeing is working with other individuals and organizations in the public and private sector who share the vision of creating joyful lives for adults with CSBD.
Autism Wellbeing will lead initiatives that demonstrate what life for these deserving individuals and those who support them looks like at its best. We are working on two life changing initiatives:
A Community Building Model — Autism Wellbeing has developed a model and support resources to ensure full and meaningful lives for individuals with Co-Morbid Severe Behavior Disorders.
The Co-Morbid Severe Behavioral Unit — Demonstration Site — Autism Wellbeing is also working with other advocates and key stakeholders to create a pilot Co-Morbid Severe Behavioral Unit (CSBU) modeled after the world renowned Kennedy Krieger Neurobehavioral Unit
We hope to support individuals with CSBD, their families and their professional care providers through a monthly Podcast featuring interviews with those dedicated to their wellbeing. Stay tuned for podcast announcements!