What happens to autistic kids when they grow up? Does a kid with substantial verbal impairment have a decent shot at growing up to have a family or a job? Does quality of life get better, worse, or stay the same? What kinds of support or services do middle aged people with autism need? What do they get? Are they happy?
John Elder Robison, an author who has autism and serve on Autism Speaks’ Scientific and Treatment Advisory Boards, recently blogged about an ambitious study, headed up by psychiatrist William McMahon of the University of Utah, which attempts to find answers to these questions.
Read more and comment on John’s post here.
My autistic son David, now 22, has finally mastered the Metro transit system here in the nation’s capital. He is also a runner who jogs alone on the Potomac River’s neat footpaths, cutting like a ribbon through tourists flocking to the Mall for the Cherry Blossom Festival. Recently, David got his driver’s license, but to ensure that he never takes more than one person for a ride, we pulled out the back seat of his little Jeep Wrangler and so far, I have been his only passenger. And there’s the rub: mastering the skills for doing things by himself has catapulted him into an ever-deepening world of aloneness. Now, everywhere he goes, roaming farther and farther into the world, he goes solo. Hardwired to protect him, this is proving more difficult for me than for him.
For years we fought side by side, battling for the right school, therapy, job coach, and lately, housing. Now, as he moves toward greater independence as an adult, the number one concern my husband and I have for our son is his growing isolation.
The supreme dread for us, and for every middle-aged parent of a special needs adult, the singular ache that dries the mouth and races the heart at 3 a.m., is loneliness: Who will offer my child a healthy, loving touch when I am no longer there? Who will care if he has not made it home by the end of the day? And if there is no one, will there be a safe shelter for him somewhere?
The fact is, middle age is scary. Bruce and I are thirty-five years older than our son, and we have no way of knowing how things will play out for him long after our bones have dried. Nonetheless, it is time to delve into the basic civil and legal rights of and for our special needs adult son. And knowing what we know, we have made some plans.
I anguish still over our decision to assume the limited legal guardianship of David’s life. This controls four basic constitutional rights: his right to vote, to marry, to choose his religion, and, God help us, his right to own a gun. For each of these civil liberties he must have our written consent. On the one hand, it pains me to think our guardianship could further stigmatize him. On the other hand, guardianship is an important instrument that will help protect him from a predator’s grasp. The question of whom to appoint as his financial trustees in the event of our mutual deaths is even more worrisome. The stakes are high here and the people we are asking to step in for us must be reliable, empathetic, and, to my mind, heroic.
No one looks forward to time spent thinking about his or her own death. But as overwhelming as the process is, in the final analysis, there is relief, not dread, in wising up and finding new ways to think about securing David’s future. Bruce and I have visited the good attorney’s office on three separate occasions now, sifting through the process’s tedious language, having heart-to-hearts with friends or family members who might be willing to assume a part of this enormous burden in our stead. Three or four times we have set a date to meet each other at our kitchen table to wade into the binder protecting David’s future. Three or four times we’ve let something get in the way before we can finish the task. But slowly, we’re getting there.
And yet, we’ve come to believe the flip side of David’s autism is its saving grace. Perhaps the disquieting things that keep us up nights do not register in David’s mind. The worry-free bubble in which he lives is almost enviable, a protective shield from anxiety. We know our son doesn’t lose sleep over what would happen if his SSI payments were slashed, if his Medicaid benefits dried up, or even how he’d get home if he lost his Metro card again. For us these are very real qualms, yet somehow manageable because they do not begin to approach the darkest monster coiled under the bed: who will love him when we are gone?
On the other hand, we know the immense pleasure of what David does have – those strong runner’s legs of his and a good support system in his two older brothers – and we recognize how much harder so many other special needs children have it. When David comes in from a night run and wolfs down a box of cereal before heading off alone to his room, I feel wonder and awe for what he can do.
But like our cat, he allows me into his presence only on his terms. Neither selfish nor mean, he’s simply not needy. For example, he’s never said that he loves me, but the gift of his love is not mandatory for our allegiance because I yield to a certain unknowability in this young man. I accept that his emotional life will continue to be a mystery because he will always live on this one-way street.
And yet, deep in my heart, there is still an ache for what could have been for him and will never be.
This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011.
If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Since our son was diagnosed more than 16 years ago, we’ve been part of a powerful learning experience full of some of the highest highs and lowest lows any parent can experience. At every age, our family and millions like us struggle with the answers to basic, immutable parenting questions such as, “what can I do to best support my child?” These questions become even more complex as our children enter adulthood and we wrestle with the looming question of, “who will care for my adult child when I’m no longer able to do so?”
A few years ago, the Southwest Autism Research & Resource Center (SARRC), in collaboration with the Urban Land Institute (ULI) and Arizona State University (ASU), began studying more than 100 residential programs throughout the U.S. and beyond, looking for best practices. We also explored opportunities for scalability and replicability within the fabric of urban and suburban communities, close to where families live. Further, we evaluated the financial catalysts needed to develop true public-private-nonprofit collaborations to create residential options that are part of a healthy community’s housing plan. We’re pleased to share these findings through our new study, Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders.
With more than 500,000 children entering adulthood within the next 15 years, we need to be assured that our adult children are able to live out their lives in comfort and safety, engaged in productive meaningful jobs and experiences that promote independence, and are part of communities that accept, understand and respect their differences.
We recognize that none of us can do this alone. The challenges are too large. The stakes, too high. Waiting is not an option. We must advance plans for the development of long-term residential housing for those individuals living with autism and related disorders, who are unable to live independently and who need support. And we need to advance those plans now.
SARRC is proud to serve as a partnering organization of Advancing Future for Adults with Autism (AFAA), which is bringing our autism community together, promoting a collaborative spirit and developing the public policy needed to create more accepting and inclusive communities.
Our son Matthew, now 18, has four years left in the public school system. That’s four years to achieve our goal of empowering him to become part of the workforce and to someday live on his own. In the early years, we thought we’d have so much time to get him on track. There would be time to provide him with thousands of hours of therapeutic interventions. Time for science to advance and identify the causes and cures. Time for him to outgrow his autism. Time for a miracle.
While we may not have reached all our goals, SARRC, Autism Speaks, AFAA and our partners are continuing to make progress toward building meaningful futures for our children and adults – futures that include friends, jobs, homes and communities that support and value them. Please join us in this journey.
This guest post is by Denise D. Resnik, SARRC Co-Founder and Opening Doors Editor.