Meet Mona D.

Autistic people are as individual as you and me. As different as we are, we all share the need to belong, be valued and be loved. There is a natural life path for most, but for some, that path is really hard to see. Everyday families like mine and so many others in the community are paving the way, knowing that one day a clear path will emerge for the many that will follow. I know that real change can happen – and all of us here at Autism Speaks are all working toward creating it every day.

What’s your why? What inspired you to want to work at Autism Speaks? What makes you most proud to work here? 

I came to work at Autism Speaks when a co-worker informed me that Autism Speaks needed a graphics person that understood autism. That was more than 10 years ago, and I am still in awe of how much this organization does and continues to do to raise the bar in care and support for our families.  

As the mom of an autistic adult son, what is a challenge that often occupies your thoughts, and how has it shaped your perspective or approach in life and your work?  

Right now, we are in the transition from crisis placement in the youth world to the adult residency placement world. My son, Jack, is 21 and cannot remain in the current placement when he turns 21, so the clock is ticking. My thoughts are constantly on making the right decisions daily, making sure the right team members are involved in the process, (school team, adult Division of Developmental Disabilities team, family support coordinator, specialized legal counsel and group home team/staff, medical staff) and trying to plan next steps for Jack to enter into the adult residency world of autism in the state of New Jersey. It's an unknown world to us and we are trying to find our way.  

Reflecting on your own experiences, what is one hope you hold close to your heart for the autism community and how do you pursue this hope in your daily life and work?

My hope is that in the future there will be clear pathways for families to follow with collaboration in a system that is integrated with school programs, job programs, day programs and medical care with residential placement through one network. So, families can better manage pathways through the system as our loved ones age into different life stages. Our personal situation at home has certainly shaped my interest in developing quality of life supports and advocacy to ensure autistics requiring higher level supports get the quality care they need.