The Autism Spectrum News Summer publication addresses the deepest fears that families face when looking to the future. Supportive Housing for Adults with Autism offers ideas, personal experiences and programs that provide a "safety net" for young adults on the spectrum.
One personal story rings true for many parents.
Supported Housing for Adults with Autism
The concept of a “group home” for individuals living with autism is an obsolete avenue. We, as a society need to be more creative, productive and pro-active. It takes a village.
There is a catch-all phrase that has been assigned to the public conception of autism: “If you have met one person with autism, you have met one person with autism. However cliché this may sound, it is simply true.
How can one human being acquire all of the knowledge base of the encyclopedia, but it is on one single subject? That’s autism. How can a human being know the entire map of the transportation system, but afraid to step on a bus? That’s autism. How can a human being write voraciously on a computer, but cannot speak a word? That’s autism.
The list of splinter skills is massive, and individuals living with autism may have to adjust their lifestyles to meet their personal needs, however, they want to live, just like you and me. The walls may be different and safety net parameters altered, but supported housing is an essential ingredient for the future of adults with autism.
"I'm an adult, I can make my own decisions" said my 24 year old man/child who has learned the lingo of the grown up world. So is his mantra when he is trying to establish his ground, as he agonizes over choices about a simple schedule change. We, as adults have learned to navigate adjustments, some better than others, but what happens when inflexibility is so paralyzing that it can be a game changer. No question mark here, just a reflection.
One day we sat around a boardroom table, assessing our son's Individualized Service Plan for the upcoming year. I could read his body language, as he tried not to explode over a suggestion that he try to revisit a possible job opportunity. "Deep breaths" I could hear his internal whisper. It was then that I pulled a prize out of my infinite bag of tricks: "So, I was watching the news this week," I said. "I was shocked to learn that Citizen Kane never won an Oscar." He stopped his agony on a dime. "Mom, it was 1941, How Green was My Valley won that year". Everyone at the table simply paused in awe. How can a 24 year old know such precise information, without skipping a beat and share it, when he cannot drop the pervasive occupation of rigidity.
What is even more suffocating for me, as a mother, is the constant nagging that I must be always available with my bag of tricks. That is my problem. Our son has certainly risen above many challenges and learned to assimilate and acquiesce. However, he is still autistic, and while he has tried with Herculean efforts to comply, there must be a balance.
Society must comply as well. Help them live.
We, as parents, recognize that there are significant and complex changes as our children grow into adults.Autism Speaks has authored "The Transition Tool Kit". It is a valuable resource that you can make your own, as it provides questions and food for thought, as you shepherd your child into the next phase of his/her life. Advancing Futures for Adults with Autism has made it a mission to investigate ways for our young adults to become active members of society. There is a light, now it will take a village.
Four years ago, I was preparing dinner while listening to the news. When I heard NBC's Brian Williams I stopped, and noted that history might actually be taking place. It was a story of pride and hope. Randy Lewis, Vice President of Walgreen had implemented a work force that hopefully would change the face of employment for those with disabilities. Mr. Lewis, prompted by concerns for his son Austin, diagnosed with autism, recognized the vacuum in the arena of jobs for adults with disabilities. He devoted a Walgreen Distribution Center in Anderson, South Carolina to hiring workers with developmental disabilities. Mr. Lewis said that "Austin's gift to me was to look past the disability and see the person".
The irony here is that this particular distribution center is 20% more efficient than all others in the Walgreen Company, and it is staffed by more than 40% disabled individuals. The building is designed with touch screens and flexible work stations. Randy Lewis's model of "same pay, same job, same performance" would hopefully have been a prototype for future companies.
The most compelling emotion that Mr. Lewis shared was the burning question that we as parents can identify with: "What would happen after I'm gone...could I live that one day longer than my child?" It was answered by a mother in the interview: "I don't have to have that worry anymore...as long as he does his job; he'll have a home at Walgreen."
The reality is that autism does not fit into a neat package. I don't know that a person with autism will always "do his or her job"; however, it is the commitment and understanding that Randy Lewis has pioneered that will be a catalyst for change in the work force.
I was enthused by this stunning concept; an auspicious goal, an exemplar for the future. The future is now; nevertheless it is four years later and given the turbulent nature of the economy our children face further challenges. However, Randy Lewis' model is the quintessential village and role model. Advancing Futures for Adults with Autism encourages our children to be productive members of society. They need respect, coupled with patience and understanding.
This includes housing. The concept of a “group home” is an aging avenue. We, as a society need to be more creative, productive and pro- active. Funding is an issue. Let individuals with autism be part of the equation. Whatever the job, or level of contribution, their earnings may contribute to their own supported living. Joint private and public partnerships are an optimal direction for funding supported housing.
Programs with “safety nets” are sprouting all around the country. This is a seductive market, and families are held hostage to high fees with the promise of supported independence. There must be a marriage between government and private/public funding. It is a winning opportunity.