By Teresa J. Foden | Interactive Autism Network Community
Much of what the public knows about adults with autism-related disorders is based on portrayals of autistic-savants in movies such as Rain Man, or in books by and about adults with ASDs who are able to communicate. But autism spectrum disorders encompass a vast array of strengths and deficits. Adults with ASDs may be nonverbal, or they may talk incessantly about obscure topics. Some may have severe intellectual disabilities, while others may be gifted but suffer profound social disabilities, the likes of which may exclude them from the well-paying jobs for which they are qualified. Some may need intensive supervision in a residential program, while some may be better suited to live in a group home, while still others may remain in their childhood home. Many of today's adults are undiagnosed, as they came of age when autism was a rare oddity, warranting little more than a sidebar in the typical college textbook. But with a growing number of people diagnosed with ASDs, researchers have begun to focus on the service needs of this diverse population, and on whether the adults are receiving the support they need from agencies designed to serve a very different population of adults with special needs.
Two of California’s UC Davis M.I.N.D. Institute educators have summed up the findings of many of these studies: “Books written by adults with autism spectrum disorders who have gone to college, developed successful careers, and/or married provide examples of ‘best outcomes’.... But the majority of studies find a variety of residual social difficulties and low rates of independent living, full-time, unsupported employment, and marriage even in relatively high-functioning adults ….”? 1
If young adulthood were a season, it might be spring for the typically developing individual, who emerges from the chrysalis of childhood and takes flight: heading off to college, moving into an apartment with friends, or maybe landing the job that could launch him or her off into a career. There's a sense of newness, of starting afresh. But the flight can be perilous for a young adult with autism. Research, particularly in the United States and the United Kingdom, shows that roughly half of today's adults with ASDs, including those with low, average, or above-average IQs, remain at home well into their 30s and sometimes beyond. A lack of employment and housing assistance for adults with autism can prevent them from moving out, even if they would prefer to live elsewhere.
The young adult with both autism and intellectual disability has aged out of the support programs he was entitled to as a child, and may be placed on years-long waiting lists for adult services. Without support, he may not have the option to live in a group home or other supported residential situation. The adult with autism who has stronger intellectual capability may not fare much better. Impairment in her social skills may mask her talents in the workplace, making her vulnerable to job loss and lack of advancement. She may be excluded from the better-paying jobs that offer health insurance, paid vacation, and other employee benefits, though she is qualified or even overqualified in terms of job skills. A lack of employment opportunities can significantly hinder her ability to achieve her potential in adulthood. (For more information on employment issues faced by adults with autism, see IAN’s Adult Employment: Strangers in a Strange Land.)
In its 2001 survey-based study Ignored or Ineligible? The Reality for Adults with Autism Spectrum Disorders, 2? The National Autistic Society (NAS), of the United Kingdom, concluded, “People with autism or Asperger syndrome are amongst the most vulnerable and socially excluded in our society. Very few have jobs, live in their own homes or have choice over who cares for them.”
Fully 70 percent of the parents reported that their adult child with an ASD would be unable to live independently without support. Parents said their children struggled with shopping, meal preparation, household chores, and bill paying. Nearly half – 49 percent – of the adults with autism or Asperger’s syndrome still lived with their parents. At the time of the report, and today, many of the support programs in the United Kingdom emphasized learning or mental disabilities, leading to the exclusion of many adults with ASDs, who may have average to above-average IQs but who may still need job coaching, housing assistance, and other supports to sustain some degree of independence.
Fast-forward seven years to the most recent NAS report, issued in early 2008, I Exist: The Message from Adults with Autism in England. 3 More than 1,400 adults with ASDs, their aging parents, and government officials participated. Their collective voice echoes many of the concerns of the previous survey: 92 percent of the parents surveyed said they worry about their adult child’s future once they are no longer able to provide care. One parent said of her daughter, “Without support, she is too scared to leave home and become independent. We are terrified about her future when we die – we have no living relatives and she has no friends, so she is utterly alone and vulnerable.”
Nearly two-thirds, 63 percent, of the adults with autism living in the United Kingdom are still not receiving the support they need. “Where do they fit – learning disability or mental health? It would help to have an Asperger syndrome or ASD-specific service or team,” said one local health services provider.
While it is not unusual for young people to live at home, or to return home after moving away, in the case of adults with ASDs, an extended stay in the family home is frequently related to a lack of services to support independence. A shortage of employment and housing assistance, and other services, hinders what otherwise might be a relatively high level of independence – not only improving the quality of life for individuals with ASDs and their families, but also saving the costs of providing a lifetime of public services to adults who want to become productive members of society.
The brief history of autism
Complicating researchers' attempts to get at the core issues that determine the quality of life for adults with autism is the disorder's short history. Autism-like disorders were described for the first time, in the United States and Austria, only two generations ago, and the defining characteristics are still rapidly evolving today.
In the recent past, children with severe autistic symptoms likely faced years of institutionalization. They were diagnosed with mental illness, most commonly childhood schizophrenia or infantile psychosis, reflecting the prevailing theory that autism-related disorders in children represented the early onset of adult psychosis. Not until the 1970s did autism begin to emerge as its own disorder. 4? During this period in social history, institutionalization of those with mental illness and other disabilities became the exception rather than the rule, giving way to legal and political pressures to serve those with disabilities in their communities. 5
Several studies put the number of adults with ASD living independently at less than half. These results are in keeping with a 1973 follow-up of 96 adults diagnosed with autism as children in the 1940s and ’50s. Although the majority of the adults in the follow-up study were highly dependent, 6? the researcher, Austrian-American child psychiatrist Leo Kanner, the first to describe autism in the United States, expressed optimism: He witnessed improvement in language and social skills throughout childhood without any intervention.
Children diagnosed in the mid-twentieth century had none of the therapies and special education of the child diagnosed with an ASD today. One follow-up study in 1967, involving 38 older adolescents and adults diagnosed as children with infantile psychosis in London during the 1950s, found that more than half had long-term hospital placements, seven lived with their parents or relatives, and three lived in sheltered housing. 7 Only two had a paid job. The researchers concluded: “About half remain incapable of any kind of independent existence and most of these are cared for in mental subnormality hospitals.” However, like Kanner, the researchers noted social and academic progress despite a lack of education and treatment services.
Promising signs of progress emerged from a 2001 study, which reported on data from developmental disabilities agencies in New York and Massachusetts. 8? Researchers found that although about half of the adults with autism were living with their parents in their 20s, by their 30s, the percentage had dropped to a third or a quarter – a lower rate than for adults with intellectual disabilities.
Researchers of another study, conducted in the United Kingdom in 2004, 9 arrived at a similar conclusion: While the past 30 years have brought significant improvement in educational and therapeutic support for people with autism, a “substantial minority” of adults, although continuing to be affected by autism, find work, may live independently, and develop meaningful social relationships. “Nevertheless, the majority remains very dependent on parents or others for support.”
Even among the adults in the study who had jobs, the pay tended to be inadequate to cover the most basic expenses of independent living. One man participating in the study, who lived in a hostel, expressed a desire to live more independently; however, though he was skilled in his profession as a charcoal burner, he couldn’t afford to move elsewhere. Another man, this one working in a graveyard, faced the difficult choice of giving up his job to move into assisted-living housing or keeping the job he preferred and continuing to live at home.
An unfinished story
Although many of the issues require further investigation, clearly many adults with autism are living at home largely due to a lack of services and supported living arrangements in the community.
In the 2004 U.K. study, researchers reported a drop-off in support during the transition from childhood to adulthood. 10 “[D]edicated services for adults with autism would not seem to have kept pace with the growth in specialist educational provision for children. A focus on access to more extensive and appropriate supported living and employment schemes could help to ensure much greater progress in the future.”
In his work, Kanner predicted that outcomes in adulthood could improve as awareness of autism grew and treatments were developed, 11 and to some degree, this has indeed occurred. But by nearly all accounts, support for adults with ASDs in the community is lacking. We need rigorous research and large collections of data, such as the data the Interactive Autism Network (IAN) is collecting from families. Perhaps most important of all, we need to reach the adults with autism themselves and ask: What are your goals? Which supports are helpful (and which are not)? Where do you want to live? How can society make you feel more at home? In an effort to facilitate dialogue among researchers, families, and adults with autism, IAN Research is developing a series of questionnaires for adults with autism and their families. The data collected will be available to researchers as they attempt to find some of the missing pieces of the puzzle of autism.
While living with parents or in supported housing doesn’t necessarily represent a failure per se, as some families may prefer that option, many of the adults with ASDs are clearly unable to access the support services that would allow them to choose a more independent lifestyle. More than 60 years after Kanner first described the characteristics of autism and expressed his hope that outcomes would improve as knowledge grew, researchers of a 2008 study concluded, “…services for adults do not appear to have kept pace with the increases in services to children, leading to frustrations in many families.” 12
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Reproduced with permission of Kennedy Krieger Institute, Baltimore, MD.