This is a guest post by Ruth Carper, Ph.D. Dr. Carper is a member of the research faculty of the Center for Human Development at the University of California San Diego (chd.ucsd.edu; radlab.ucsd.edu). She is beginning a study on the cognitive and behavioral changes that occur in people with ASD over the age of 30 years, and on the support services that are available to people in this age group.
Kids with ASD get lots of attention in the media, in research, etc. But what happens when those kids are 20? Or 40? These kids we see today will grow up, do grow up. They will become adults, some able to function independently, go to college, and have “normal” lives. Others will move to group homes or supported living services, and some will stay at home with family. But they will grow up and there are a great many issues that families must contend with and plan for and a great deal of information that service providers and scientists don’t yet have.
In the past, studies of long-term outcome in adults with ASD only looked at very basic measures. Outcomes were classified as ‘good’ or ‘poor’ based primarily on independence – holding a job, living outside of the parents’ home – and simple measures of overall intelligence. While this information is useful, it doesn’t provide much detail about how relevant symptoms and specific abilities change during adolescence and adulthood. Social skills often improve, but we don’t yet know to what degree, or whether skills continue to improve across the lifespan. Repetitive behaviors are thought to diminish or change in quality. Only recently has research begun which will help us to understand how symptoms and abilities change as people with ASD grow up.
At the recent International Meeting for Autism Research (IMFAR), the special Educational Symposium “What Really Matters: Measuring Outcome and Addressing the Needs of Adolescents and Adults with ASD” introduced some of these issues. (The symposium was organized and moderated by Drs. Patricia Howlin and Peter Szatmari. Presentations were given by Julie Taylor, Themba Carr, Somer Bishop, and Kaite Gotham.) While a short symposium can only scratch at the surface of such a broad topic, the information offered was informative and is summarized below. However, the thing that struck me most about the session was that it was standing room only, showing the growing interest and attention that will be paid to the needs of adults and adolescents with autism.
The transition to adulthood
Our education system provides appropriate (more or less) training as mandated by IDEA until the child reaches 22 years of age. But access to services changes drastically after that, with many services no longer available to young adults. This time of transition can have a major impact on young adults with ASD and on their families. Any parent reading this blog knows that change can be quite stressful for an adult or child with autism. The drastic changes to daily routine, structure, and social opportunities can affect mood, anxiety, and behavior. One study examined the challenges that occur during the period as the individual exits the school system.
The daily routine, structure, and social opportunities that are provided by the school setting, as well the behavioral interventions that may be implemented there, generally help to improve the child’s social skills and behaviors. Not surprisingly, the loss of these opportunities reduces the rate of that improvement and may even result in setbacks. Researchers followed a group of children and young adults during their school years and saw a continuing reduction in the frequency of unwanted repetitive behaviors, ongoing improvement in pro-social behavior, and improvement in internalized behavior. Unfortunately, when these children left high school, their rates of improvement slowed substantially. For the most part behavior didn’t get worse, but the change in rate suggests that further gains may have been possible but that those opportunities were missed. If structured services were more available for adults with ASD, substantial gains might continue.
In addition to the behavioral and cognitive issues that define autism, additional problems may arise. The challenges of living with autism can produce anxiety and depression both in people with autism and in their families and caregivers. This may be particularly problematic for higher functioning individuals. Even among adults who do not have autism, greater awareness of one’s own social limitations or poor social skills, is known to correlate with depression. Higher functioning people with ASD generally have greater insight into their own limitations and that may affect mood or produce anxiety. Insight into a person’s prospects for independent living is also a predictor of depression.
More cognitively impaired people with autism may be somewhat protected from these secondary stressors simply by being less aware of their own limitations. But it’s difficult for us to know. Communication skills are poor of course, but it’s particularly difficult for them to communicate about abstract concepts such as emotions. A range of emotions is certainly felt, but can’t be described in words. And the overt symptoms that can be indicators of depression in young children with similar language difficulties, may not be telling in autism. Typical hallmarks of depression such as changes in appetite or sleep patterns are often abnormal in ASD even without depression.
Effects on the family: Cultural differences
Having a child with autism, whether he is still a child or is an adult, can have a substantial effect on the life of the parent. Family relationships can be affected, friendships, activities, and finances, can all be affected. In a survey of parents, mothers were asked to reflect on the degree to which their child’s ASD had affected their own lives and compared the effects reported by African American and Caucasian mothers of different levels of education. Caucasian parents generally reported a greater negative impact on their daily lives than did African American families. The moms that reported the least negative impact were African American parents with less education (e.g. high school as opposed to college). This suggests that these families are better able to cope on a personal and emotional level than other families. This is somewhat surprising given that these moms probably did not have the same financial resources that are typically available to families with more education. This may also be surprising in light of the reported difference in services utilized by these families. During the school years, Caucasian children with ASD receive many more hours of treatment outside of school than do African American families. However, it is unknown if this reflects a true difference in access, or is a result of the lower perceived impact.
This two-hour symposium was only able to discuss a small part of the very large topic of adolescence and adulthood in autism. We still need to know more about how abilities and symptoms change in the longer term, into middle age and even into senior years. Families still need to know if sufficient care services are available and are appropriate for their adult children. We need to know what interventions, training programs, and other support services are most effective for improving quality of life. Fortunately, funding agencies, such as Autism Speaks and the National Institutes of Health, are now directing effort toward these issues, specifically asking for more research on later portions of the lifespan in autism. Where funding goes, research will follow, so we can expect a better understanding of these issues in the coming years.
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.
To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php.
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.
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.