Over the coming decade, 500,000 individuals with autism will leave school and enter adulthood. This is in addition to the millions of adults with autism who already live throughout the United States. Many of these individuals will need to access the adult services system, a system that already has exceedingly long waiting lists and few autism-specific supports. One of the most critical needs of this group of adults is for appropriate housing and residential supports – an essential component to living as independently as possible. As a society, we are currently ill-prepared to support the housing needs of this oncoming surge of individuals on the autism spectrum. In response to this deficiency, Autism Speaks has launched a National Market Survey to quantify and characterize the current housing and residential support needs of individuals with autism across the country. This will allow us to promote public and private sector support to better meet the unique needs of adults with autism, and to expand the housing and residential support options for this growing segment of our population.
Mari-Anne Kehler and her husband, Eddie, have a son, Liam, on the Autism spectrum. Their family has been impacted by the challenges of raising a special needs child into adulthood. Mari-Anne is active in the community in the areas of autism awareness and fundraising and in mentoring families impacted by autism.
She has served on numerous non-profit boards supporting children, education and the special needs community, and she was the President of the Los Angeles Board of Autism Speaks
“I can do it independently, Dad!” I hear my 17-year-old son announce to his father as they make lasagna dinner for 10 guests. Liam is a wizard in the kitchen and cooks his own meals. My husband is passing on his “famous” recipe that he claims enamored me on many dates before we married. (Really?)
When Liam was diagnosed in 1998 with severe autism, we couldn’t imagine his future would include cooking, wooing girls or proudly announcing his talents. Today, Liam is a popular member of his student body, has a job he enjoys, friends and a girlfriend he fancies. He is even a 21st century blogger. Check it out! http://liamkehler.tumblr.com/.
But in between that diagnosis and today were years of uncertainty and no reasonable promise of adult independence. Liam didn’t have language until he was almost four years old. Despite the gamut of therapies and early progress, at age nine he had a secondary regression which created the havoc that many families with autism know all too well – elopement, unspeakable self-injury and isolation. His bedroom consisted of a floor mattress and padded walls to protect his head and a tarp to protect the floor from his refusal of previously mastered toileting.
So for us, considering alternative housing options came earlier than expected. If we couldn’t help Liam at home at age nine, what would lie ahead for him? Thus began the journey to understanding various housing options and figuring out how it all worked. We did our research and the landscape was bleak: limited living options, models that don’t accommodate unique needs and conditions that were not always what we’d want for our son to live a rich, full life.
Fortunately for us, Liam eventually showed improvement and we were able to keep him with us at home. And he has thrived. But now, at 17, we are looking at where he will end up. And that “we” includes Liam. He is very vocal about his passion to live on “his own”. That means a supervised setting, ideally with peers. There is a myth that individuals with autism do not seek community; most I know continually seek their version of a social life. And therein lays the challenge: finding or creating options as fast as we can, allowing our sons and daughters to live with purpose and dignity.
Numbers like “1 in 88” define the current statistics of autism births, and we are stunned. We can’t even keep up with services needed today! Hidden in those numbers is the fact that children with autism become adults with autism.
The tsunami created by this epidemic is currently taking place – those kids diagnosed two decades ago are now adults. And each year the number of adults requiring appropriate housing, employment and social settings gets larger. For example:
· At least 70% of adults with special needs never leave home, for lack of options.
· 80% of adults don’t have adequate employment opportunities.
· 62% of families do not have a life plan in place for their loved one.
Scary? You bet. Hopeless? Not if we focus on the right questions.
Parents are consumed with the question: “What will happen to our child when we are not around?” But we need to reframe the question to “What can we do today to ensure our child has a purposeful life now, and in the future?”
· Think “transition to adulthood” from early on and make sure that is reflected in IEPs and your child’s programs.
· Map your child’s passions and talents to possible occupations. Be creative.
· Get smart about available living options. Begin a life plan.
· Join and support organizations designed to advance living options.*
And let’s ensure a future of adults living with purpose and dignity, now.
Mari-Anne is the Founder of the FRED Conference which focuses on more housing options, increased employment opportunities and a way to provide community settings for our adults with and without special needs. She is also the Founder and Executive Director of Golden Heart Ranch, a non-profit organization that addresses the crisis in special-needs housing and lifestyle.