April is Autism Awareness Month. I offer you a guest post today, from an old friend. Please scroll to the bottom for a bio about Angela.
Parenting is the hardest job I do. I have lost one son to suicide at 21, three years ago. My other son is 20 and moderately autistic. Connor loves his music, computer, TV, and eating pizza. He doesn't know about autism, he doesn't function at a level where he can tell me much about what he experiences emotionally. Instead on a bad day he throws things, breaks things, and sometimes pushes people around. He can talk, he doesn't know what to talk about. We do therapy, it will never end the difficulties but we try to give him words to use instead of meltdowns. At this age everyone who sees him in public knows that he isn't a competent adult, and is pretty accepting of his public behavior. But the news is full of adults with autism that run afoul of law enforcement untrained to deal with strange autistic behavior.
Autism Awareness doesn't end with April, we live with it 24 hours a day. The challenges vary so widely from family to family that while knowing your own child with autism is daunting, knowing many people with autism is enough to change our whole society. The reality is that each of these children, ever increasing numbers of children, grow up, as adult autistic persons with very demanding needs. My own son Connor at twenty years old, cannot be described as a child anymore, but his care, and many of his desires are childlike. Being packed into a man-size body brings many different issues added to the now familiar ones.
So now the generation of parents who have waded through autism 101; the diagnosis, the preschool, meltdowns, drag-out fights with school districts, homeschooling, vague vocational training for largely nonexistent supported jobs, is now confronted with failure in most cases. Our children are grown, have almost no options, are bored, still very autistic, and have a tiny support structure consisting of their own aging parents, grandparents, and if lucky, a sibling who can enable the daily life of this individual. The future is bleak and the population to be served is large and growing with every graduating class. I don't know what tomorrow will bring for my son, I do know that he will someday have to walk away from his familiar home to rely on a stranger, and his tools to do that are not ready. If this is a downer, I know it is one shared by parents of about 1.5 million people in the U.S. having an autism spectrum disorder (ASD).
The number of adults living with autism today is even less certain. Some sources cite that roughly 80 percent of those individuals with autism are under the age of 22. Given that the prevalence of autism has increased 10-fold during the past decade, the number of children with autism who will become adults over the next few years is huge. Some call it the “autism Tsunami”. Consequently, there are vastly larger numbers of older (adolescent/adult) individuals in particular in need of appropriate interventions and services than ever before. These adult services just don't exist in most communities. Unfortunately, the need will continue to exceed the resources leaving at least this generation of people with autism and their families in a financial, and personal limbo and socially diminished. In my family this leads to lonely nights and frustrated days.
Now some facts: The potential of young adults and adults (14 years of age and older) with autism to become employed and engaged citizens of the U.S. is not so much limited by their disability itself but, rather, by the failures of the system charged with supporting them. According to a state-wide study conducted in Florida in 2008 by The Center for Autism and Related Disabilities (CARD), approximately 67% of the 200 families of 18-22 year olds with autism surveyed did not have knowledge of transition services; 73% indicated they needed help with their job; 63% need help with daily living; 78% do not know of agencies or professionals who can help them find work; and while74% want to work, only 19% were currently working. The economic cost of this system's failure is far reaching. Research published in March, 2012 found that autism costs society an estimated $126 Billion annually - a number that has tripled since 2006. I cribbed most of the numerical facts from Advancing Futures for Adults with Autism.
Angela Lowry is a parent and an artist from Oklahoma. She is an advocate for autism awareness and treatment, and struggles to include her son in community life, while trying to find time to read voraciously, do art and stay in touch with her own friends. She will be 50 this year and is a single divorced person.