Guest post by Merope Pavlides, editor of AutismAfter16.com, author of Animal-assisted Interventions for Individuals with Autism and mom to two sons, one of whom is on the autism spectrum.
Autism is not a condition of childhood. Autism follows the person. It follows the person into the workplace, the community, adult relationships and health care. Until recently, however, little attention has been paid to issues surrounding adulthood with autism. Fortunately, we have now begun a national dialogue, and Autism Speaks is bringing its voice—and resources—to the discussion in a big way.
On January 26th, Autism Speaks held a research summit entitled, “Adults with Autism: Sharing Ideas, Filling the Gaps,” in Chapel Hill, NC. The event was co-hosted by Extraordinary Ventures, a model employer of adults with autism. Extraordinary Ventures was founded by Autism Speaks supporters and parents Lori and Gregg Ireland.
The meeting brought together many premier scholars on adult autism issues, as well as Autism Speaks representatives, autism service providers, parents and donors. My husband, Peter Emch, and I were invited to participate as parents and long-time supporters of Autism Speaks. The very fact that Autism Speaks included parents in an event like this is hugely meaningful, because it grounds the research agenda in real-world experience and need.
Moderated by Autism Speaks Chief Science Officer, Geri Dawson, Ph.D., the meeting provided the opportunity for investigators to present overviews of current research projects funded by Autism Speaks and for all participants to ask questions and share ideas. The morning session showcased studies aimed at describing autism spectrum disorder (ASD) in adults, while we spent the afternoon with prescriptive research involving topics such as how to improve interventions.
Morning keynote speaker Marsha Mailick Seltzer, Ph.D., of the University of Wisconsin’s Waisman Center, outlined “Trajectories of Development in Adolescents and Adults with ASD.” Afternoon headliner Paul Shattuck, Ph.D., of Washington University, discussed “Service Use and Outcomes among Youth with ASD.” I found it interesting that both Seltzer and Shattuck noted that, despite few published studies on adults with autism, there is an abundance of data awaiting analysis. This means that we need to be investing resources in finding the meaning in the information that’s already available.
As a parent of a young adult with autism, it’s gratifying to sit in a room with so many smart, energetic people and learn that they want to bring their talent and enthusiasm to bear on the same issues that worry me as a parent. I’m also a special educator. As such, I’m so glad to see researchers demonstrating concern for how academic findings translate into real-life practice. While it’s crucial that we continue to deepen our understanding of what life is like for adults with autism, it’s just as important to make immediate progress in improving their lives.
I was especially excited to hear so much conversation on the topic of our adults as learners. As a society, we tend to think about the autism service system for adults as involved exclusively in care giving. Rather we need to develop dynamic supports that provide ongoing opportunities for personal growth and development. The summit allowed those who are studying adult needs to connect with those who are examining skill-building models. It’s this type of collaboration that fosters new programs that not only look good on paper, but also work in the real world.
Finally, participating in an event like this reminds me of how important it is for families to understand that they are integral to the research process. Sometimes we feel as though investigators go about their work in ivory towers without understanding the real needs of those on the ground. As families, we must be active participants in the research process. Not only in the sense of filling out questionnaires and providing information, but in terms of actively making use of the knowledge emerging from this research. That doesn’t mean we need to bury our noses in scholarly journals. It does mean that we need to enter into thoughtful discussion with scientists about how to incorporate what they are learning into what we need from adult service providers. Good scholarship is being conducted through Autism Speaks funding. As a community, let’s not allow it to happen in a vacuum.
[Editor’s note: Thanks to our grant search engine, you can explore Autism Speaks-funded research concerning adolescents, adults and related services here.]
After we highlighted Farmsteads of New England as January’s “Home of the Month” on our new Housing Portal, we received many requests for more information about this housing initiative. For that reason, we asked its Founder and Executive Director, Deborah DeScenza, to blog about her experiences with her son, Andrew, and about how FNE got its start.
“What is going to happen to Andrew when he grows up?” I recall asking myself this question as I sat at my desk one night when my son was about 8 years old. Andrew had been diagnosed with autism years ago, and all of my focus and energy up to that point had been dedicated to working with his school to make sure he received the supports and services he needed there. But now I had a new concern: his long term future.
When I researched what services were available in our state, I found that there was basically only one model: adult foster care for residential services or competitive employment/volunteering/ “van therapy” during the day. I felt my son needed something different, so I started thinking about Andrew’s interests and needs, as well as his strengths and weaknesses. As Andrew grew older, it grew more and more difficult for me to take care of him alone. He was non-verbal, needed help with personal care, and he had developed insomnia and obsessive-compulsive tendencies that were very difficult to manage day in and day out. Andrew would need a staffed residence with 24-hour supervision and day services that would allow him to do activities that he could understand the meaning of. I also wanted him in a rural setting where he could safely expend his excess energy. It dawned on me that a farm might just be a wonderful place for him to live because it would provide him with the “room to roam” he needed without the worry of traffic on busy streets, and it would allow him to utilize his assets while minimizing the impact of his social limitations. But I also knew that we needed to ensure that he was not isolated and lonely.
Thus, I began to develop the idea of a farmstead that provides the opportunity for several people with autism (or other developmental disabilities) to live and work together in a supportive farming environment – an environment that gives these individuals the support they need to do meaningful work, to live a healthy lifestyle, and to develop genuine and long-lasting friendships. I also wanted a work environment that gives the staff the support they need in order to prevent the burn-out that is so prevalent in their field. I wanted them to have the chance to work as part of a team and to have help readily available if needed. So I developed a model in which the staff works in shifts as mentors to the individuals with autism – they live, work, and play alongside the farmers, modeling appropriate behaviors and interactions instead of simply supervising or coaching.
Today, after a lot of hard work, and some good fortune, our Farmsteads of New England consists of 6 residential buildings. Each one consists of four one-bedroom apartments surrounding a common room. In most cases, there are three individuals with autism or other developmental disabilities and one non-disabled mentor living in the building. We are able to provide essential supports to adults with a wide range of needs. We have also focused on developing a good working relationship with the local community which benefits everyone involved.
Next, we hope to replicate our model throughoutNew Englandin the years to come. We have already started day services at a second farm inNew Hampshireand hope to add residential services there in the future. In my opinion, it makes sense to replicate a working model with the backing of an existing and successful organization, rather than force other families to start from scratch if they want a similar future for their child.
For more information about Farmsteads of New England, visit them here.
For more information about the new Autism Speaks Housing and Residential Supports Portal and tool kit, please click here.
On January 18, 2012 at 3pm EST Jack Robison and Kirsten Lindsmith will appear on NPR’s Talk of the Nation with guest host John Donvan. They have been invited to talk about autism and growing up as well as other topic’s discussed in The New York Times article ‘Navigating Love and Autism,’ in which they were featured.
This is a guest post by Allison Rogers. Allison is a lawyer in private practice in Washington D.C. and volunteers actively with Autism Speaks in their housing policy initiative. She has a younger brother, Adam, who has autism.
For as long as I remember I would ask my Mom these questions. Is Adam going to live at home forever? No. Will he live with me when I am older? He will have a house of his own one day. When’s that going to be? I don’t know, sometime after he graduates high school. Who’s he going to live with? Ideally Jeff and Joe, maybe a couple of other boys, and a support staff.
I will be completely honest and admit that I had no role in my brother’s summer of 2010 move into a group home. Throughout the years, my Mom promised us, without exception, that Adam would have a home of his own one day. I think this was her way of protecting all of her children and not just the one who needs the most protection. She took on the responsibility, not only because she was in the best position as a mother to advocate on his behalf, but because she did not want to leave this huge responsibility of mapping my brother’s future to her daughters. As the matriarch of the family she set the tone for familial relationships. Stacey and I, as sisters, must love and support Adam, but Shari, as the Mom, will make the big decisions.
Fast Forward to June 2010. I am locked in the basement of the law library studying for the bar exam, receiving texts from Mom. He’s moved out. Are you ok? I feel weird. Do you need to talk? Ok.
We talked. I did my best to assure her it was a transition, transitions are always hard, and once she gets used to the new living situation both she and Adam would be better off. I tried to comfort her. I remember saying, “it’s like when I went off to college; it’s like when Stacey went off to college. It’s a huge, but completely normal adjustment. And most importantly, he’s FIVE MILES AWAY.” And that’s how, just for a moment, the roles switched and I became the protective one, but not of Adam, of my Mom.
August 2010 I made my first visit to Adam’s home. The descriptions I heard that the house is huge; the house is beautiful; the house is individualized to your brother’s and his housemates’ needs were not inaccurate. The house is huge. The house is beautiful. The house is Adam. Adam lives with four other boys. Two of the boys, Jeff and Joe, Adam grew up with. They each have their own rooms, reflecting their personalities, and their bedroom doors are adorned with the first letter of their names. They have ample living and dining space, a back and front yard, a television and even a Wii.
I love Adam and his new independence. Of course, the house did not cure him. He’s still Adam. He still has his moods and he will still have his nights where he stays up all night shouting to whoever will listen. He still repeats words, sometimes hundreds of times, and he will still rip his shirts and blankets for no apparent reason. Yet he is happy. He is happy with his house. He is happy with his friends. He is happy to come home to my parents’ house and he is happy when we go to the house to visit him. I see pride when he shows me his room, points to the family pictures on his bedroom wall, shows me his Wii bowling skills and sets the dining room table.
I can honestly say Adam moving into a group home has given our family the best of both worlds. He has independence. My parents have their independence. Yet we are five miles and ten minutes away from family time.
Guest blogger Ruth Carper, Ph.D., Asst. Research Scientist, Center for Human Development, University of California, San Diego
Adults with autism and their families may be interested to know that the scientific community is turning more attention toward understanding the full life course of autism spectrum disorders (ASDs). While a great deal of research is directed toward understanding the causes of the disorder and developing interventions for young children, we still know relatively little about how the disorder is expressed in adults and how autism changes as individuals on the spectrum get older. This year one of the Invited Educational Symposia at IMFAR was dedicated to this topic, and entitled: Adults with Autism Spectrum Disorders: Challenges for Epidemiological and Outcome Research.
The first two speakers Traolach “Terry” Brugha, M.D., and Fiona Scott, Ph.D. come from the UK where they have recently collaborated on studies of adults with Autism Spectrum Disorder. Dr. Brugha and his colleagues conducted a large epidemiological survey to assess the prevalence of ASD among adults living in the general community (published earlier this month in Archives of General Psychiatry, 2011; v. 68(5): pp. 459-466). The rates of ASD diagnosis have been rising rapidly in the last many years and it is generally accepted that at least part of this increase is due to increased awareness of the disorder among pediatricians, educators, and other child specialists, and to improvements in detection and diagnosis especially in individuals who do not have comorbid intellectual disability. However, it is important to remember that this also implies that there may be a large number of adults who could meet the criteria for an autism diagnosis but who have never been diagnosed with a disorder on the spectrum. To address this, Dr. Brugha and his colleagues contacted adults at more than 13,000 residential addresses in a door-to-door Adult Psychiatric Morbidity Survey in England. Using a stratified random sampling approach, 7,461 individuals participated in first phase interviews which included screening for a variety of psychiatric diagnoses. Individuals who met certain criteria on a 20 item screening questionnaire for autism spectrum disorders were selected to participate in more in-depth assessments including the ADOS (Autism Diagnostic Observation Schedule) and ADI (Autism Diagnostic Inventory). After all testing was completed, 19 individuals were determined to have previously undiagnosed autism spectrum disorders which the authors estimated represents of a rate of 9.8 per 1,000 in the general UK population. Importantly, they did not find evidence of any significant differences in rates across age. That is, it appeared that the oldest individuals were just as likely to have a previously undiagnosed ASD as the youngest.
The next speaker was Dr. Fiona Scott of the University of Cambridge, who is also part of the Adult Psychiatric Morbidity Survey in England. Dr. Scott focused on the particular challenges of accurately diagnosing ASD in higher functioning adults who did not have pre-existing diagnoses. ASD is a developmental disorder and accurate diagnosis requires knowledge of the individual’s social, communicative, and behavioral development during early childhood. The APMS study focused on a higher functioning population that may not have sought services during childhood and particularly wanted to include adults of all ages. Accurate diagnosis is particularly challenging in this population because it is often difficult or impossible to acquire accurate information about the early developmental period. Community-living adults in their 50s, 60s, or 70s may not have living parents who can describe their early development and if they do, these parents are being asked to recall subtle behavioral changes from many decades before. Accurate diagnosis may be further hindered by our limited knowledge of the life course of behaviors. The behaviors and abilities of individuals with ASD change as they get older, as part of normal maturation, as a result of the interventions and training that they partake in, and in response to the challenges that they face in daily life. For example, Dr. Scott pointed out the possibility of comorbid psychiatric disorders such as depression that may arise later in life and may make diagnosis less clear. This could be particularly problematic for previously undiagnosed populations such as those in the APMS study who would not have received outside support for dealing with social challenges.
Other diagnostic challenges include gender differences in ASD. The APMS study found a 9:1 ratio between males and females in the rates of ASD whereas most studies of children find ratios closer to 4:1. This may mean that the screening tools that were used need to be modified for use in women or it may be an artifact of the community-dwelling population that was examined. Women with ASD are often more severely affected cognitively than males and require more behavioral support, but individuals living in institutional housing were excluded from the APMS study.
The only member of the panel who was not from the UK was Marsha Seltzer, Ph.D. of the Waisman Center at the University of Wisconsin. Dr. Seltzer has been following more than 400 children and adults with ASD, and their families, for about 12 years. She is evaluating people who ranged in age between 10 and 52 years when they first entered the study and her research group continues to follow them. Dr. Seltzer reported several interesting findings from their series of studies. On average, individuals in her study showed improvement in social reciprocity and reductions in problematic repetitive behaviors and stereotyped interests across the first 6 years of the study. About 30% also showed significant improvements on the Scales of Independent Behavior-Revised which measure self-care and community living skills as well as cognitive and motor abilities. These improvements could be a result of the supports and interventions that the individuals receive in the community or could simply be the natural life-course of the disorder. However, Dr. Seltzer also reported a study that raises the question of whether even greater improvement might be possible if better support structures were provided. In a study that looked selectively at younger adult subjects who were exiting high school they found that, although repetitive behaviors decreased with time, the rate of improvement was much higher while students were still in school, but slowed substantially (or even regressed) after leaving school.
The final speaker was Patricia Howlin, Ph.D. of King’s College in London who provided a broader perspective of the natural life course of ASD across the life span. She reviewed outcome studies from 1967 to the present. These studies tend to classify individual outcomes as “good”, “fair”, “poor” or similar categories based on the level of independence achieved. For example, those who live in institutions are given poorer ratings than those who live by themselves and those who have part-time jobs rate better than those in sheltered employment or day programs. Over the years there appears to have been a slight decline in rates of “good” outcomes compared to “fair” or “poor” outcomes in such studies, but Dr. Howlin pointed out the subjectivity of these ratings and the difficulty of interpreting the effects of service changes such as the move from housing in large institutions to small group homes. Studies have also found that as much as 16% of adults with ASD develop additional psychiatric diagnoses such as depression and obsessive compulsive disorder which may be triggered by life stressors (citing Hutton et al., 2008). But those with good community support may have better outcomes (citing Farley et al., 2009).
The symposium on Adults with Autism Spectrum Disorders presented some important findings on the topic and also pointed out some of the unique challenges to this area of research. Identifying and recruiting this population is not a trivial task but one which must be addressed. Efforts to improve available tools in this area are moving us forward and it is clear not only from this symposium but from other presentations given at the IMFAR meeting — on diagnostic tools targeted at verbal and non-verbal adults, interventions for adults, and changing health status — that this area of research will continue to grow.
In a story scheduled to air tonight, ABC World News Tonight with Diane Sawyer will feature Autism Speaks Executive Vice President of Programs and Services Peter Bell and his family in a segment on preparing adolescents with autism for life as adults. ABC recently spent the day following Peter and his wife Liz at home as they build a transition program for their 17 -year-old son Tyler, who has autism. The segment will highlight the challenges many families face in preparing their children for adulthood when educational entitlements go away and services are limited and opportunities are few. For more information on what Autism Speaks and other organizations are doing to improve the outlook for adults with autism, please visit Advancing Future for Adults with Autism.
Click here to find the viewing time in your area.
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.