About

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.

Community-Minded Approach

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.

Our Commitment

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

Our Voice

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!

Our Inspiration!

Andrew

Brandon

Jake

Kyle

Michael

Michael

Our Leadership

Dr. Cyndy Hayes

Founder/Trustee Emerita

As you may know, severe autism and other Co-Morbid Severe Behavioral Disorders are lifelong disabilities. The question that keeps parents up at night is what's going to happen to my child when I am no longer here to care for him/her? I am entering my 70's and have been advocating for over 25 years. I am wiser, for sure, but also older.

I am proud to say that I am passing the torch to my daughter Marni Kane, a brilliant and caring young adult that will bring new ideas and energy to this important work. She has assembled a talented team of individuals with contemporary skills and a commitment to humanity that will help us all sleep a bit better at night. The new board includes siblings, caregivers and self-advocates.

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.

Marni Kane

President

Marni is a graduate of Cornell University, a sibling advocate and Strategy Director at Red Antler, NYC. Marni developed the branding for Autism Wellbeing!

Devin Carsdale

Treasurer

Devin received his Master's Degree from American University. He is a sibling advocate, a Compliance Consultant and a 30Under30 GreenBiz Recipient.

Andrew Turco

Secretary

Andrew is a graduate of Rowan University, a sibling advocate and a "proud life coach to Brandon!"

Elise Daugherty

Trustee

Elise is a graduate of Rowan University. She is a clinical caregiver.

Bianca Delvecchio

Trustee

Bianca received her Master's in Occupational Therapy from Seton Hall. She is a sibling advocate and works with children with special needs at Easterseals.

Nick St. Clair

Trustee

Nick is an autism mentor, self-advocate and talented artist.