Aging Out: A Cliff or a New Horizon?
One day your child will turn 21, if he or she hasn’t already, and the years of struggle and advocating in the public education system will be over. You will lift your head up to peer over the edge of the trench you’ve been fighting in for more than 15 years and see a vast frontier of uncertainty as adult life begins. It’s scary. It elicits a blank stare when someone asks you what’s next for your young adult. You don’t know. Adult daycare program? Living skills development? Job training? Some kind of modified employment? Or sitting home day after day without anything meaningful to do and no respite anymore for you? The most recent statistics indicate that between 70% and 90% of adults with autism are unemployed. These are our worst fears, compounded by the fact that we, too, are aging out and will not always be here for our highly vulnerable children. It's a bleak outlook, but only if we allow it to be so.
The oft-quoted Mark Shields adage that “There is always strength in numbers,” is true for us. If your child was born in the 1990s, we are all surfing this tsunami of autism together. We raised our voices to fight for intervention services for our little ones and won some gains from our governments. Now, we need to speak out again to demand support for our young adults who are pouring out of school systems each year only to face overcrowded and underfunded support programs. We are a population inculcated in the notion that the government will provide us solutions and we have had some successes in holding them accountable. However, we also need to help them innovate across various branches, not just those tasked with administering health services.
My son, Fraser, has moderate to severe autism and he is 21 years old. He is obsessed with all things military, and his dearest wish is to be in the armed forces. Current recruitment guidelines preclude him from serving in the military. But if we think about the military from his point of view, it’s an interesting fit – structured, routine, unambiguous, requires wearing the same thing every day. Admittedly, deficits in executive functioning, as well as sensory and proprioceptive issues, would be risky in combat, but why can't our young men serve in support services and other positions that could utilize autism’s highly specialized skills? It’s not that farfetched, and a precedent does exist. The Israeli Defense Forces induct individuals on the autism spectrum, employing many of them in its Visual Intelligence Division working on their aerial analysis. Moreover, not allowing people on the spectrum to serve their country could be construed as discriminatory. A campaign to encourage the Canadian Forces to consider training and inclusion of individuals with ASD could be well worth our time and effort.
Another area of possibility is government support for small business development. Over the years, I have seen or heard about cooperatives of families who have started and operated small businesses that employ their children, among them cafes, bakeries, crafts co-ops, manufacturing socks, and farming co-ops. We know our children’s abilities better than anyone. Small business development grants and loans for self-employment and family-supported employment open up a wide variety of avenues for adults with autism. Admittedly, there are pitfalls, such as parents burning out and aging out, but that means training, and encouraging the inclusion of, younger people who can sustain the management of these kinds of initiatives, thus developing another sector of highly-skilled leadership and employment.
Finally, we must also be smart in becoming aware of innovators in the private sector and encouraging more corporations to change their culture toward inclusion. In 2012, CASE: Canadian Association for Supported Employment recognized the prevalence and importance of what they term "Generation A." They noted that, “Canada is facing a labour shortage and yet we have a huge resource pool we’re not tapping into – the stats for Autism alone identify that there are close to 5000 Canadians diagnosed with Autism Spectrum Disorder (ASD) that will be turning 18 this year. . . Regardless of how you choose to frame it: ASD is here. And all reasons aside, the numbers are increasing. So how do we as a society prepare for Generation A?”. The following year, they launched a program called Meticulon which employs people on the spectrum in the IT industry. We need more corporations in the private sector to ask these kinds of questions and participate in the solutions. Obviously, people on the spectrum are very diverse in ability. Working in the information technology field may be a fit for some of our children and not for others. Regardless, we need to make a compelling case to business and industry that they can and should view the population of adults with autism as a valuable resource in the years ahead.
Unquestionably, we are exhausted, uncertain, worried, and feel like an invisible population so much of the time. But we do have numbers, and we do have voices, and it's time to be creative. As our generation of differently-abled young people looks toward the rest of their productive lives, let’s continue to advocate for them and raise our voices together in the service of new visions for their futures.
ABOUT SHANNON WRAY
Shannon Wray is a writer and television producer with credits in both Canada and the U.S. Currently; her family is the subject of the upcoming CBC POV documentary film, Love, Hope & Autism airing nationally on March 18, 2018. She is at work on a companion book to the documentary entitled, A Different World.
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