living autism awareness by marie-ilene whitehurst

April is Autism Awareness Month in support of understanding and acceptance for people with autism.  

In our family, we have been living “ autism awareness” since 1994 when our son Thomas was diagnosed with autism and marking the beginning of an entirely new phase in our lives. Back then, there was a dearth of information on the internet and so much was learned by talking to people in different cities and reaching out, often by snail mail, to a few burgeoning organizations many of which were just grassroots organizations started by parents.  We were fortunate to learn early on that right in our backyard, a new community agency, the University of Miami Center for Autism and Related Disabilities, had recently opened to offer support to families free of charge. They were a beacon of light to our family and I am happy to say 25 years later they are still actively involved in Thomas’ and our lives.  At 2-1/2, Thomas started early intervention and began participating in an intensive speech and language program. This was the beginning of what is now well known as ABA, applied behavior analysis therapy.

A few years later, in 2000, my dear friend Michelle Cruz and I started the first  Autism Speaks Walk (formerly National Alliance for Autism Research-NAAR) in Crandon Park on Key Biscayne and to our amazement over 3000 walkers showed up and we raised over $300,000. The annual walk has now grown to over 25,000 and was moved to Doral. Our walk was the first time in Miami that hundreds of families were able to come together to meet each other and share stories. So many of those families are still our close friends. 

Fast forward and things have changed dramatically.  When Thomas was first diagnosed, the rate of autism was said to be 1 in 10,000, and now in 2020, the rate of autism is said to be 1 in 54. Almost everyone we encounter has a close friend or family member affected with autism.

Fortunately, educational and therapy options are abundant.  It seems as though every few months a new school has started for children with autism.   The support groups offered by community agencies like UM/NSU CARD, Parent to Parent, FIU Embrace, and others are there to assist families in a multitude of ways.  Pediatricians and doctors are better trained as to the early signs of autism and can refer these young children for early intervention treatments sooner but there is still a long way to go.  People used to pray for a cure for autism; now we hope that increased research will address finding the cause of autism and which therapies, services, programs, and medical interventions are best to help each individual.   

Families like ours are now focused on the future needs of our adult children.   When our young adults turn 22, it is described as “falling off the cliff” as the school system ends and the safety net is lost.  Families are very often unprepared for this moment. For those that are able to, college is an option. Many adults would like to work but find it difficult to find a meaningful job.    Important questions are asked such as, “Where will my adult child live?” and “who will take care of them when I am no longer able to?”  

This is exactly what we are addressing at Casa Familia, a non-profit started by my husband Tom and I along with 7 other families all with adult children with intellectual and developmental disabilities.  With groundbreaking scheduled for fall of this year, Casa Familia will be the first of its kind in South Florida to sponsor affordable housing for adults with IDD in an enriched community setting. Our model will be replicable and our hope is that there will be many residential options for families offering safe and affordable opportunities for living inclusive, robust and purpose-filled lives.  

We have learned so much from our son about unconditional love and celebrating every step of progress. Thomas has worked so hard to overcome challenges and as he tries to understand the confusing world around him. In spite of the fact that he is largely non-verbal, he lets us know when he is feeling happy and loved. His beautiful blue eyes look at us and fill our hearts with joy every single day.  The world of autism is not an easy journey but we cherish each milestone and know that we will never give up trying to make his future, and all those like him, be the best life possible.   

Marie-Ilene Whitehurst and her son Thomas