As Neal celebrates his 16th birthday, I am met with the realities of parenting a child with severe autism. Neal will always need me to care for him.
Yes, he has come so far in his development. At one time too frightened to even leave the house due to sensory overload; he now loves going on adrenalin-producing amusement park rides. On the day he turned 16, he rode a roller coaster and requested going on “Soaring Over California” three times in a row (much to my weak stomach’s chagrin!) For the most part, Neal has chosen to leave the isolation of his inner world of autism behind and become part of this brave new world. Much of his story and how we got there is chronicled in my soon to be released memoir, Now I See the Moon www.nowiseethemoon.com (HarperCollins)
As Neal ages, I must help to create his world. But what options are out there for him? How can this tall, lanky teen whose thoughts and feelings are the same of any teenage boy (asking “when do we eat?” and flirting with cute girls) be part of a world that doesn’t completely understand autism?
This is especially true with nonverbal autistics. There are still lots of folks out there who believe that just because someone cannot speak, they do not hear or think. And Neal, bless his soul, can still go into tantrum mode if his schedule is upset or an unexpected noise startles him.
I’ve accepted that he will always need some kind of companion to help him navigate his adult world. But where will he live? Where will he work? Will he marry? Have children? Go on dates? What will happen to him after I pass?
Fortunately, I am not alone with my uncertainty. I’ve been going to conferences, becoming part of committees like the Jewish Federation Special Needs Task Force on Housing, and the Senate Select Committee on Autism, and everyone is asking the same question: “What happens when our kids become adults?” With a ratio of 1 of 110 folks having autism, and this number growing, we must find answers.
Answers come in surprising ways. I’ve just been privy to a new book which gives parents a road map to help their kids with autism navigate the real world, with tips on what to do when they become adults. Sixteen of the world’s most renowned autism experts united to give parents those answers and there are pearls of wisdom in every chapter. Authors include Dr. Temple Grandin, Bill Davis, Karen Simmons, Keri Bowers, Eric Chessen, Stephen Shore and Pat Wyman.