Having autism as an adult

This article explains the difficulties of autism after high school and entering the adult world.

Melanie Tyner-Wilson is facing one of her toughest battles yet. She wants nothing more than to help her son Jay Tyner-Wilson, who is a person with autism, land his first real job.

Public school provided opportunities for Jay to gain volunteer vocational experience. There, he discovered he enjoyed working with animals -- and school offered a repetitive, structured and routine environment. But Jay is 21 years old now and aged out of the school system in May.

"The challenge is now finding a job," says his mother. "That's the golden ticket that I'm trying to figure out."

Jay did not qualify for an official high school diploma, so the path to college or career is a tricky one. Melanie laments that many people with disabilities end up living in poverty unless they have families and other resources that can save and plan for them. With an ever-increasing number of students on the autism spectrum coming through the school pipeline, questions abound as to what they can do to build a life for themselves beyond school.

A new study at the University of Kentucky College of Education helps frame the conversation around this transition. The National Institute of Mental Health (NIMH) has awarded a $693,000 grant to College of Education Professor Lisa Ruble and a cross-disciplinary team of co-investigators at UK and Indiana University-Purdue University Indianapolis.

"This funding will allow us to find ways to help reduce or eliminate the disconnect from needed services that often occurs when students with Autism Spectrum Disorder (ASD) complete school," Ruble says.

Melanie says her son is a person with multiple skills that would be of value to an employer, but who would need additional support.

"The powerful thing about this study is that it brings national attention to it beyond just some parent like me saying 'oh dear, my poor child,'" she says. "It is exciting because when something gets researched, it gets attention and it counts. It formalizes things and forces people to begin to pay more attention in this area. We have all kinds of people like my son Jay in the far reaches of this state and we need to figure out how we are going to meet their needs and give them a quality of life."

The study will further the research team's previous work with an intervention called the "Collaborative Model for Promoting Competence and Success" (COMPASS) for young children with ASD. COMPASS is a parent-teacher consultation model that has been shown to empower teachers, families, and above all, students, by improving educational outcomes.

While the work with COMPASS has been successful for young students, it will need to be adapted, based on stakeholder input, for students nearing adulthood and preparing to complete high school. Once adopted, it will be tested in a randomized controlled study of 32 participants. Additional variables to help understand factors that explain optimal and poor outcomes will be obtained.

Jay has been receiving services at the UK College of Education ever since he was a pre-school student at the college's Early Childhood Lab. He participates in services offered through the college's CASPER center such as social skills training and small group programs. Through the years, Jay has had the opportunity to interact with many of the college's faculty and students.

"UK is conducting research and training all these people who are going into careers to help those with autism," Ruble says. "It is uplifting because I know every student who goes through these programs helps raise the state and nation's capacity to provide services to children and adults with ASD. We need to continue to keep doing better."

Melanie is involved with the Autism Society of the Bluegrass, which is a caregiver support and advocacy group. She has had an opportunity to meet many individuals on the autism continuum. These individuals have a wide range of abilities -- some attend college, but many struggle to find employment.

"While many on the continuum have achieved postsecondary education and/or employment, there continues to be a significant number that struggle," she says. "The challenge is how we are going to plan and get what we need for these individuals."

For now, Jay is putting in lots of volunteer hours in pursuit of "the good life."

"I'm doing the same thing any parent would want for their child," his mother says. "We want to make sure our children are okay after we are gone. With Jay, it's a more involved, complicated plan. I think it's possible. I have got to figure out as a parent how to do it.

"It's been really humbling to be on this journey with my son, and it's probably the hardest thing I have ever done in life. It's also an honor because he's just an amazing person and has taught me so much as a parent."

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Is driving more difficult for autistic adults?

A study looked into autistic adults and determined driving may be more difficult for them.

In the first pilot study asking adults on the autism spectrum about their experiences with driving, researchers at Drexel University found significant differences in self-reported driving behaviors and perceptions of driving ability in comparison to non-autistic adults. As the population of adults with autism continues growing rapidly, thesurvey provides a first step toward identifying whether this population has unmet needs for educational supports to empower safe driving -- a key element of independent functioning in many people's lives.

"Previous research in my lab has included extensive research in driving capacity with people who have a variety of conditions such as multiple sclerosis or who had experienced traumatic brain injury," said study co-author Maria Schultheis, PhD, an associate professor of psychology at Drexel. "When we investigate whether and under what circumstances a condition or neurological difference might affect driving ability, as a standard starting point we want to go to individuals and find out from their perspective what problems they are having on the road, in their real-world experience. That question is pivotal to shape and inform the goals of long-term research -- and is especially important when we turn to look at a developmental difference like autism, where there has been too little research to establish yet whether widespread driving difficulties exist."

Only a few previous studies have examined driving ability in individuals with autism, and those studies focused on adolescents and new drivers rather than experienced adult drivers. These studies relied on parent surveys and evaluations of discrete aspects of driving performance. The new Drexel study, published early online this month in the Journal of Autism and Developmental Disorders, used a validated survey that has been extensively used in driving research, and asked adult licensed drivers on the autism spectrum to describe their first-hand, real-world driving experiences.

"We were beginning to see discussion in the research literature that aspects of autism spectrum disorders, such as neurocognitive challenges and social recognition difficulties, could make it likely that members of this population would experience significant challenges with driving," said the study's lead author Brian Daly, PhD, an assistant professor of psychology in Drexel's College of Arts and Sciences. "But that assumption hadn't been studied in adult drivers, or based on the experiences of the drivers themselves -- so these were the questions we explored."

In this survey, adults with autism spectrum disorders reported earning their drivers' licenses at a later age, driving less frequently and putting more restrictions on their own driving behaviors (such as avoiding driving on highways or at night), on average compared to non-autistic adults. The respondents with autism spectrum disorders also reported more traffic violations.

Because this pilot study was relatively small and based on self-reports of 78 ASD respondents and 94 non-ASD comparison participants, Schultheis and Daly noted that the differences they found were open to several possible interpretations. Autistic adults may have reported driving less often and restricting their behaviors out of self-awareness of actual difficulties or deficiencies in their driving. These difficulties and/or reduced driving exposure could also explain the higher rate of reported violations.

Alternatively, it is possible that the respondents on the autism spectrum were more honest in their answers, but no worse at driving than everyone else.

"In driving research, it's well established that people have a positive bias when reporting their own driving skills," said Schultheis. "Because the study relied on self-reported answers, we can't rule out whether the respondents with autism were simply being more descriptive and honest about their difficulties than the control group."

One intriguing finding that Daly and Schultheis noted was that the difficulties adults with autism reported were not clustered in any specific areas, such as problems related to social processing of other drivers' or pedestrians' expected behaviors, or difficulties with neurocognitive aspects of driving such as motion perception and reaction time.

"It suggests that the challenges these individuals are facing are more global than specific," Daly said.

"This is such an important study," said Paul Shattuck, PhD, an associate professor and director of the research program area in life course outcomes at the A.J. Drexel Autism Institute, who was not involved in conducting the study. "Cognitively-able adults on the autism spectrum face many barriers to full participation in society. Facilitating access to transportation options will increase the capacity for these adults to contribute to their communities."

Daly and Schultheis are continuing to investigate driving behavior in adults with autism through further research, with funding from the A.J. Drexel Autism Institute, the first autism research center focused on a public health science approach. In the next phase of research, the team is using driving simulation in Schultheis' lab to objectively capture aspects of actual driving performance in adults on the autism spectrum. Individuals interested in enrolling in these studies should contactschultheis@drexel.edu.

"This is a first step toward identifying, categorizing and quantifying challenges that may exist in this population," Schultheis said. "What we find will help determine what needs there may be for interventions, from driver education programs to different kinds of training exposures."

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Autism in adults leads to many health problems

This article discusses how autism in adults can result in many other health problems.

Autism apparently isn't a stand-alone disorder, with new research revealing that adults with autism often face a host of mental and physical illnesses.

Kaiser Permanente researchers found that nearly all medical conditions are significantly more common in adults with autism spectrum disorders than those without, ranging from depression to gastrointestinal problems to obesity. Notably, however, adults with autism are much less likely to smoke or use alcohol than other adults, and cancer rates are similar.

"Some of these conditions we've seen in children with autism, so we expected higher rates of anxiety and depression, and some of the medical disorders, such as gastrointestinal disturbances, in adults," said study author Lisa Croen, director of the Kaiser Permanente Autism Research Program in Oakland, Calif.

"That's been reported for a long time in children, so we're not surprised to see those continue to be elevated," she added. "But we were surprised by the magnitude of what we found."

The study is scheduled to be presented Thursday at the International Meeting for Autism Research in Atlanta. Research presented at scientific conferences typically has not been peer-reviewed or published and results are considered preliminary.

Diagnosed in about 1 in 68 American children, autism spectrum disorder is the fastest-growing serious developmental disability in the United States, according to the advocacy and research organization Autism Speaks.

The disorder can be mild or severe, but symptoms typically include social and communication difficulties and repetitive behaviors.

Croen and her colleagues examined medical records from 2008 to 2012, and compared the prevalence of psychiatric, behavioral and medical diagnoses among 2,100 adults with an autism spectrum disorder to 21,000 adults without the disorder.

Adults diagnosed with an autism spectrum disorder had markedly higher rates of mental health problems than the other adults:

• Depression (38 percent versus 17 percent)
• Anxiety (39 percent versus 18 percent)
• Bipolar disorder (30 percent versus 9 percent)
• Suicide attempts (1.6 percent versus 0.3 percent)

People with autism spectrum disorders were also more likely than adults without the disorder to have physical ailments, such as:

• Diabetes (6 percent versus 4 percent)
• Gastrointestinal disorders (47 percent versus 38 percent)
• Epilepsy (12 percent versus 1 percent)
• Sleep disorders (19 percent versus 10 percent)
• High cholesterol (26 percent versus 18 percent)
• High blood pressure (27 percent versus 19 percent)
• Obesity (27 percent versus 16 percent)

"What the data show is really an extension of what we've learned already of children and adolescents with autism," said Dr. Paul Wang, senior vice president and head of medical research for Autism Speaks, who wasn't involved in the study. "It's not just a brain disorder -- it's really a disorder that affects the whole body. And this shows that these problems don't go away."

Croen said that many possible reasons exist for the wide gap in mental and physical ailments suffered by adults with autism, including a potential genetic basis. But the "core impairments" of those with autism -- such as communication problems and heightened sensitivity to touch -- can also make it difficult for them to be properly examined by clinicians, she said.

"People with autism often have very selective eating and their nutrition suffers," Croen added. "Their social impairments can lead to isolation, which leads to a lack of exercise. So some lifestyle factors can create more unhealthy lifestyles."

Social isolation may also explain why adults with autism are less likely to drink alcohol or smoke, noted Croen, also a senior research scientist at Kaiser Permanente Northern California Division of Research.

"Smoking and drinking are more social behaviors, especially in young people," she said. "Or, that's how it gets started. These young people with autism are out of the mainstream."

Croen and Wang agreed that autism researchers should extend their focus beyond the brain to multiple bodily systems as well as examine the transition from pediatric to adult health care.

"I hope these findings raise awareness among the medical community and others that adults with autism have a really high burden of medical and psychiatric conditions, much more than people think," Croen said. "There's a real need for doctors to be educated about autism and the characteristics of these adults so they can provide adequate and effective care."

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Autism symptoms in adults eased by challenges at work

Challenges in the workplace can ease autism symptoms in adults.

For adults with autism, having the chance to work somewhat independently may lead to a reduction in symptoms of the disorder, a new study suggests.

The research puts new emphasis on the potential for adults with autism to develop and improve over their lifetimes, said study author Julie Lounds Taylor, an assistant professor of pediatrics at Vanderbilt University, in Nashville.

"We have assumed it's really hard to budge autism symptoms in adulthood. Drugs are targeted to problems like acting out, for example," she said. "But this study suggests that these adults need a place where they're intellectually stimulated, and then we'll see a reduction in symptoms."

The challenge is to find the right fit between a person's abilities and interests and a specific job, she explained.

"How independent can they be and what are the risks of failure? We have to be careful. You're talking about a huge range of people with autism," Taylor said. "I've seen people who can manage pretty high-level jobs, like computer programming or being in the military, while others have more [mental] challenges, but can still work a job in the community with support."

Autism spectrum disorders are a class of neurodevelopmental disorders defined by difficulties with social functioning and communication, according to the researchers. Symptoms include restricted interests, repetitive behaviors and difficulty with social interactions.

The study findings were reported online recently in the Journal of Autism and Developmental Disorders.

Increasing the level of independence in adults with autism isn't necessarily difficult to do, Taylor said. "We found behavior changes any time you could bump [them] up to doing something a little more independent," she said. "As they get more independent, you see more benefit."

Yet understanding what makes a good fit is a huge challenge, she said. "Insight is one of the characteristics people with autism typically may not have, so we will probably need the person's perspective and then gather information from families, looking at what's available, and incorporating all of that together," Taylor explained.

About 50 percent of adults with autism spend their time in sheltered settings, and a minority work in the community, according to Taylor. Most have trouble holding steady jobs, she added.

For the study, the researchers tracked the behavioral development and activities of 153 people with autism spectrum disorder over a five-year period. Their average age was about 30.

The data came from a larger study conducted at the University of Wisconsin-Madison, which followed 400 families with adolescents with autism over 10 years. Data were collected at two different points in time almost six years apart. Data came from the primary caregiver -- 150 were mothers and three were fathers.

The researchers found that having greater vocational independence and engagement was related to reduction in autism symptoms and maladaptive behaviors. It was also associated with improvements in daily life activities.

An expert in autism spectrum disorders who was not involved in the study said the results were not surprising.

"This study suggests that, as with nondisabled individuals, a more positive work experience can have many important associated benefits downstream," said Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at Steven & Alexandra Cohen Children's Medical Center of New York, in New Hyde Park.

If the research can be replicated, Adesman said it suggests greater emphasis needs to be given to helping adults with autism spectrum disorder find as independent and engaging a work environment as possible.

Taylor said the key point for parents of adults with autism spectrum disorder is to understand the value of getting the best possible vocational placement for their son or daughter and advocating for it.

"If it's a terrible fit, in ability or in what interests them, it won't work out," she said. "But a job can have lasting behavioral impact across the lifespan."

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Autism symptoms improved by employment

A study shows that employment may improve symptoms for those with autism.

More independent work environments may lead to reductions in autism symptoms and improve daily living in adults with the disorder, according to a new study released in theJournal of Autism and Developmental Disorders.

Researchers at Vanderbilt University and the University of Wisconsin-Madison examined 153 adults with autism and found that greater vocational independence and engagement led to improvements in core features of autism, other problem behaviors and ability to take care of oneself.

"We found that if you put the person with autism in a more independent vocational placement, this led to measurable improvements in their behaviors and daily living skills overall," said lead author Julie Lounds Taylor, Ph.D., assistant professor of Pediatrics and Special Education and Vanderbilt Kennedy Center investigator. "One core value in the disability community and at the Vanderbilt Kennedy Center is placing people with disabilities in the most inclusive environments possible. In addition, this study gives us evidence that increasing the level of independence in an employment or vocational setting can lead to improvements in autism symptoms and other associated behaviors."

Participants averaged 30 years of age and were part of a larger longitudinal study on adolescents and adults with autism. Data were collected at two time points separated by 5.5 years.

Taylor, in collaboration with colleagues at the University of Wisconsin-Madison, looked at such autism symptoms as restricted interests, repetitive behaviors, communication impairments and difficulties with social interactions and found the degree of independence in vocational activities was uniquely related to subsequent changes in autism symptoms, other problem behaviors and activities of daily living.

The results provide preliminary evidence that employment may be therapeutic in the development of adults with autism. Similar to typically developing adults, vocational activities may serve as a mechanism for providing cognitive and social stimulations and enhance well-being and quality of life.

"The majority of research on autism has focused on early childhood, but autism is a lifelong disorder with impairments that limit quality of life throughout adulthood," Taylor said. "Given the prevalence of autism, now one in 88 children, we must continue to examine the factors that promote well-being and quality of life for adults with autism and other disabilities as a whole."

Underemployment is a common phenomenon among adults with autism, the authors noted, with around 50 percent of adults with autism primarily spending their days with little community contact and in segregated work or activity settings.

Taylor says this research highlights the importance of employment programs for adults with autism and stresses the need for more intervention programming for this population.

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Young adults with autism struggle with jobs and independent living

This article discusses how adults with autism may struggle in independent living situations and in their job search.

For young adults with autism spectrum disorders (ASDs), making the transition from school to the first rites of independent adult life, including a first job and a home away from home, can be particularly challenging.

Two newly published studies show precisely how stark the situation is for finding success in employment and independent living among young adults on the autism spectrum, compared to their peers with other types of disabilities. The researchers emphasize the need to strengthen services to help adolescents and young adults and their families with transition planning.

"Roughly 50,000 youth with autism will turn 18 years old this year," said Dr. Paul T. Shattuck, an associate professor in the A.J. Drexel Autism Institute and Drexel University School of Public Health, who co-authored both studies. "So many of these young people have the potential to work and participate in their communities. Supporting this potential will benefit everyone -- the person with autism, the family, employers and society."

Employment Outlook: Just Over Half with ASDs Had Ever Worked for Pay

In the Journal of the American Academy of Child & Adolescent Psychiatry, Shattuck's team reports that young adults with autism spectrum disorders have worse employment outcomes in the first few years after high school than do peers who have other types of disabilities.

"Not only was the employment rate low for young people with ASDs when compared with young adults with other disabilities, but pay for jobs -- if they got them -- was significantly lower compared to young adults with other types of disabilities," said Anne M. Roux, senior research coordinator at the A.J. Drexel Autism Institute, who led the employment study as a member of Shattuck's research team while both were at Washington University in St. Louis.

They report that just over half (53.4 percent) of the young adults on the autism spectrum they surveyed had ever worked for pay outside the home within the first eight years after leaving high school. Only about one in five (20.9 percent) young adults with ASDs worked full-time at a current or most-recent job. Average pay was $8.10 per hour.

Employment rates, full-time employment status and average pay were substantially higher for young adults with other disabilities, including learning disabilities, emotional disturbance and speech/language impairment, compared to young adults with ASDs. The employment gap widened even farther when adjusted for differences in functional skills and conversational ability.

"The news is mixed," Roux said. "This study highlights the particular difficulty that youth with autism are having during the transition into adulthood, especially youth from poorer households who are more likely to be disengaged from the services needed to secure and maintain a job.

"At the same time, half of young adults with an ASD did become employed, including youth with more challenging levels of impairment. This finding gives us hope for what might be possible with more effective preparation for employment, transition practices and workplace supports."

In an independent editorial in the same journal issue, Dr. Patricia Howlin of King's College London and the University of Sydney, wrote, "if young adults with autism miss out on this rite of passage, they risk transition into a world of social exclusion, financial hardship and significantly decreased quality of life. On the positive side, there is evidence that specialized, supported employment programs can be very helpful in assisting young people into work and in improving quality of life and even cognitive performance."

Residential Status: Young Adults with ASD Less Likely to Live Independently

In another study published this week in the journal Autism, members of Shattuck's research team report that young adults on the autism spectrum are less likely to have ever lived independently after high school, than adults with other disabilities.

"This paper suggests that the years following high school are markedly different for young adults with ASDs compared to other disability categories," said Kristy A. Anderson, a doctoral student at the University of Wisconsin-Madison, who led the residential status study. "Notably, young adults on the autism spectrum have higher rates of coresidency in the parental home."

Young adults on the autism spectrum were less likely to have ever lived independently since leaving high school, compared to their peers with other disabilities. More young adults with autism lived with their parents or guardians, and for longer periods of time, than did individuals with emotional disturbance, learning disability or intellectual disability. They also had the highest rates of living in a supervised living arrangement.

Young adults with an ASD also experienced the highest rates of postsecondary residential continuity (79.1 percent).

"They are residing in the parental home at higher rates and longer time periods relative to peers with other disabilities, warranting family-based services in the years following high school exit," Anderson said.

Despite the concurrent study on employment, the researchers found no association between having held a paying job and residential outcomes among young adults on the autism spectrum.

Long-Term Research Targets the Autism Services Cliff for Adolescents

The analyses of employment and residential status were both products of Shattuck's widely recognized research program examining outcomes and service use among adolescents and young adults on the autism spectrum. The needs of this age group are largely under-represented in research, even as many individuals diagnosed in childhood face a decline in available social services after they age out of the educational system.

The project involves long-term follow-up study on the outcomes of a large, nationally representative sample of young adults (National Longitudinal Transition Study). All of the participants were initially enrolled while receiving special education services in school; they or their parents completed regular follow-up surveys for up to 10 years after the student had completed high school.

"Many families tell us it's like driving off a cliff when their child with autism exits high school because there just aren't many options once they enter adulthood," Shattuck said. "Our work highlights the enormous challenges facing this vulnerable population and their families. Experimenting with innovative solutions that can help these youth is a top priority at the A.J. Drexel Autism Institute."

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Study: Autistic Adults Report Shortcomings in Their Health Care

A study discusses how autistic adults report having worse health outcomes than non-autistic adults.

Researchers at Oregon Health & Science University (OHSU) have found that adults with autism, who represent about 1 percent of the adult population in the United States, report significantly worse health care experiences than their non-autistic counterparts.

"Like other adults, adults on the autism spectrum need to use health care services to prevent and treat illness. As a primary care provider, I know that our health care system is not always set up to offer high-quality care to adults on the spectrum; however, I was saddened to see how large the disparities were. We really need to find better ways to serve them," said Christina Nicolaidis, M.D., M.P.H., principal investigator and associate professor of medicine (general internal medicine and geriatrics) at OHSU.

The study, published in the Journal of General Internal Medicine, was conducted by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), an academic-community partnership where academic investigators, autistic adults and other community members work together throughout the project.

Nicolaidis and colleagues surveyed 209 autistic adults and 228 non-autistic adults through a secure registration system for online studies. Autistic adults reported greater unmet health care needs, higher use of the emergency department, and lower rates of preventive services such as Pap smears. They also reported poorer satisfaction with provider communication and lower comfort in navigating the health care system or managing their health.

"While I am discouraged by the findings, I am also encouraged by the direct involvement of the autistic community in all parts of this project. In order to ensure research that is truly useful to autistic adults, it is critical to involve us directly in the process," noted Dora Raymaker, AASPIRE's community co-director.

The study also has important implications related to changes in the newly released Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which combined Autistic Disorder, Asperger's Disorder, and Pervasive Developmental Disorder Not Otherwise Specified into one new category of Autism Spectrum Disorder. There has been considerable controversy over the new criteria, with some studies predicting a significant reduction in the number of people who will meet criteria, especially among those with Asperger's disorder or without intellectual disabilities.

"The existence of health care disparities in our sample, most of whom had diagnoses of Asperger's and/or high educational attainment, highlights the possible negative consequences of stricter criteria. Not having a diagnosis may deprive patients and their providers of insights, strategies, and accommodations to improve health care experiences," explained Nicolaidis.

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