This guest post is by Peter Bell, executive vice president for programs and services at Autism Speaks. Peter and his wife, Liz, reside in New Jersey with their three children. Their eldest son, Tyler, has autism.
From the moment my wife and I heard the words “your son has autism,” we knew our lives as a family would never be the same. The concerns and challenges that come with raising a child with autism are many. But the one concern that always lingers, and intensifies when our kids become teenagers, is: what does the future hold for our child?
Our son Tyler is now 17 and we are immersed in planning his future. As we navigate our way through his “transition,” it’s becoming abundantly clear that Tyler’s future, including the ability to maximize his potential and give him a life of dignity, rests largely on our shoulders. There’s no manual to guide us. There’s no pot of money to help us find him a job, establish a home or help integrate him into the community. And we have found very few examples of adults living with autism at Tyler’s level of functioning who are thriving, leading a life of independence and purpose that are making us look forward to the future. Instead we forge ahead like pioneers heading into new territory determined to find him a better life.
A recent documentary, however, has helped reduce our anxiety and inspired cautious optimism about Tyler’s future and what lies before us. “Dad’s in Heaven with Nixon” is an 86-minute film that first premiered on the Showtime Network in early April and is scheduled to re-air on Father’s Day (June 20) at 3 p.m. ET. If you want an inspiring glimpse of what autism might look like as our children reach adulthood, then this movie is a must-see.
You may already be asking, “What does a film about Nixon have to do with autism?” In reality, nothing. The film chronicles the life of a family from New York City who has been living with autism for almost 50 years. The second youngest of five children, Chris Murray was born at a time when the prevailing medical belief was “refrigerator mothers” caused the emotional damage to their children that presented as autism. But in this case, his mother Janice was warm and caring like most moms. She did have a premonition during her pregnancy that things were going to be different with Chris. Unfortunately her instincts were correct and Chris suffered from oxygen deprivation during what turned out to be a very traumatic birth. It wasn’t until years later that he was diagnosed with autism. Through the use of beautifully restored home movies and the insightful narration of filmmaker Tom Murray (the eldest Murray child), we recognize that autism in the 1960’s was pretty much the same as it is today, despite altered hairstyles and fashions of the supporting cast.
Fast forward to present day, Chris is now a 50-year-old man living a purposeful and rewarding life in New Haven, Connecticut. In the early 1980’s he attended Chapel Haven, a transitional residential program serving adults with cognitive disabilities. He graduated from that program well over 25 years ago and he now lives on his own and works two jobs: one at a local hospital and the other at a health food store. During his free time, he is an accomplished artist. His paintings, mostly of buildings and landmarks from his native New York City, are in high demand by art collectors and aficionados, including Gloria Vanderbilt. Although he could easily make a living selling his artwork to the rich and famous, he prefers to work his two jobs and lead a simple life. He is happy and content, safe, living his life mostly on his own. He creates art not for fame or profit, but for the experience of the art itself. Mission accomplished in our book.
Another prominent message of this film, one that will probably resonate with many families in our community, is that autism is just one part of the fabric that shapes the dynamics of a family. Every family has a story, and in the case of the Murrays, we learn that the experiences and attitudes of other family members, in both current and previous generations, have had a profound effect on the lives of everyone in that family. It was not only Chris’ autism that provided a challenge for the Murray family, but the additional layer of mental illness and the devastating damage with accompanying resilience in some, that make this film so riveting.
Which brings us back to the title – “Dad’s in Heaven with Nixon”. Without giving it away, the title comes from a comment Chris makes on camera and a perspective and simplicity that would seem odd to most people – but maybe not so strange to those who share life with a loved one with autism. While talking with his brother Tom many years after his father’s death, Chris shares his insights into death and heaven, concepts that are hard for anyone to grasp, but especially difficult for those on the spectrum. At a time when your heart begins to feel heavy and your eyes want to well up, Chris magically lightens up the moment with his priceless comment. At this instance, it all makes perfect sense.
With Father’s Day right around the corner (Showtime also did a showing on Mother’s Day), here’s an uplifting and hopeful film that all families with a loved one affected by autism should take the time to see. If you’re like me, this is a film that’ll stick with you. And I hope you share the sense of hope, optimism, and, perhaps most important of all, awe at the power of love, that my family experienced.
As Janice Murray poignantly says towards the end of the film: “Love really can make miracles happen.” Now that’s inspiring.
To date, Autism Speaks has funded $1.9 million in Family Services Community Grants to more than 100 service organizations around the country in the areas of education, recreation; equipment/supportive technology and young adults/adults. The following is from one of our recipients from 2008, the Asperger’s Association of New England which serves individuals with Asperger Syndrome throughout New England:
The Asperger’s Association of New England, or AANE, is very grateful for the generous grant from Autism Speaks that allowed us to offer the Destination: Independence program. Destination: Independence consisted of a series of four courses on independent living skills, reinforced through one-on-one coaching under AANE’s Life Management Assistance Program (LifeMAP). Destination: Independence was designed to meet the practical needs of young adults with AS, who tend to be less mature than neurotypical young adults, are often stuck in their attempts to establish independent lives, and are less likely to be able to resolve their problems though traditional interventions such as “talk therapy.” Participants were able to learn independent living skills in a hands-on manner; learned life tasks with the assistance of a coach; increased independence; and employed problem-solving, social interaction, relationship building, and social pragmatic skills.
One participant wrote on his evaluation form:
I wanted to give you a little feedback on what I am working on. As you may know, I am going to graduate from college in May and I do not think I would have passed this last course without the help of Destination: Adulthood and my LifeMAP coach. So I accomplished that goal. Now, I am working on volunteering at the JFK library and getting a part-time job. Thanks for the help, T.
My LifeMap coach and I have been working on me learning how to use transportation which I think that I could still use practice on. We also worked on going grocery shopping and making healthy food and drink choices at the grocery store! She was helpful with my goals and I would like to continue to work with her.
A coach wrote:
I see increased confidence in the client due to my (the coach’s) validation of her struggles and challenges, and due to success in overcoming of obstacles. We are close in age and so I found that the client looked up to me like an older sister or just a role model. I noticed that my compliments and acceptance of who she was and my encouragement for her attempts at finding a job, acquiring a driver’s license, etc., helped her accept that while her pace might be slower than her peers’ she would eventually get there.
Another coach wrote:
The client, a recent (out-of-state) college graduate, was also very isolated and had the goal of maintaining social relationships, but it became clear that she did not have local relationships to maintain. The coach accompanied her to events at AANE initially, and eventually she began to attend on her own. The coach’s involvement in getting the client to come to AANE was instrumental in making new relationships and eventually led to the client joining a weekly AANE support group and connecting to a therapist through AANE as well.
Congratulations to AANE and Destination Independence on their wonderful program!
Autism Speaks in currently accepting Letters of Intent until June 10, 2010 – get those great ideas in to us so we can continue to serve the community! Please also visit our Advancing Futures for Adults with Autism initiative at www.afaa-us.org and “like us” on Facebook, where we regularly post articles and items of interest regarding adult issues and services.
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.