Aging with Autism 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 classic 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 classic autism. We believe our new focus will allow us to better serve the most vulnerable and “invisible” adults with classic autism. 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 adults with classic autism 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 classic autism 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 autism, 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 classic autism.
Autism Wellbeing will lead an initiative to demonstrate what life for these deserving individuals and those who support them looks like at its best. It will include a trans-disciplinary professional team using evidence based best practices and will include a research component to inform others making decisions that can improve quality of life.
A small service provider model will be developed in Southern New Jersey. If you have interest in joining us in this important work please reach out. You have an opportunity to improve the lives of thousands of individuals with classic autism and those who support them.
We hope to support individuals with classic autism, their families and their professional care providers through a weekly Podcast featuring interviews with those dedicated to their wellbeing. Listen to our current podcast and previous episodes and download other important resources.
It Takes a Village
As you may know, autism is a lifelong disability. The question that keeps parents up at night is whats going to happen to my child when I am no longer here to care for him/her? Well, as of this writing I am 67 years old and have been actively advocating for my son and yours for the past 25 years. I am wiser, for sure, but also older. I will continue to do this important work until I take my last breath. I will be heavily involved in program development and design, our new podcast and of course loving my three incredible children.
However, I am proud to say that I am passing the torch to my daughter Marni Kleifield-Hayes, a brilliant and caring young adult that will bring new ideas and energy into this important work. She will assemble a talented team of individuals with contemporary skills and a commitment to humanity that will help all of us sleep a bit better at night.
It is my sincere hope that you will give Marni and her team the same love and support that you have provided me so that we can provide Brandon and all of the other beautiful Brandons the lives they so richly deserve.