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The period between the ages of 18 and 28 is critically important in establishing a foundation for adult life. For young people on the autism spectrum, these years tend to be especially challenging.
In the United States, about half of young adults on the autism spectrum work for pay at some point after they leave college. But only one in five works full-time, and their rates of employment are lower than those of people with language impairments, learning disability or intellectual disability alone. Young US adults with autism are more likely to work for pay if they are from middle- to high-income households and have reasonable conversational abilities and functional skills. âI see a lot of people on the spectrum who come out of high school with no work skills,â Temple Grandin told me:
One of Britainâs leading autism researchers, Elisabeth Hill, argues that more time, money and research need to be invested in autism in employment.
As Hill notes, a lack of secure employment not only places continuing financial demands on autistic adults and their parents, but also involves costs associated with additional care, such as the benefits system, thus providing a significant economic burden to the nation.3
Research related to support for adults with autism tends to be under-developed. As an example, system and service development to support the successful transition to adulthood and meaningful vocation for adults has received relatively little research scrutiny until recently, with practitioners and programme developers lacking evidence-informed approaches guiding service delivery.
For many years, at least in the United States, researchers were not particularly interested in these issues. Partly, this was because autism professionals tended to focus on children. For nearly four decades after Hans Asperger, in 1938, and then Leo Kanner in 1943, introduced the term âautismâ in the sense we understand it today, confusion continued to reign between autism and schizophrenia, with some professionals still referring to autism as âchildhood schizophreniaâ. Indeed, this confusion persists, to this day, in Russia and other parts of the Soviet Union. As Igor Shpitsberg, founder of the Our Sunny World institute for autism in Moscow, told me in 2016:
Even when researchers do begin to investigate the transition to the workplace, they have run into a number of obstacles. One is the shortage of study participants. The autism community appears to be more tightly knit among families with younger children and, once children are older, families may not be as keen to take part in research because they no longer anticipate the kind of âquick fixâ for which they might once have hoped.
Another problem is funding. Funding agencies tend not to be enormously interested in supporting any studies which might help to explain why the years after college are so daunting. This is especially the case for research related to services assisting young people with autism to transition to adulthood. The overwhelming majority of autism research remains focused on children. Funding agencies also tend to prefer research which explores the biological mechanisms underpinning autism â especially those which can be translated into animal models.
Dr Catherine Lord, professor of psychology at Weill Cornell Medical College in New York, has proposed an enlightened method of âluringâ sponsorship by research into transitions. Scientists, she suggests, could interpret the concept of a âmechanismâ more broadly to include the evaluation of therapies which improve conversational skills or other aspects of daily living.5 There is some evidence that adults with strong adaptive living skills â such as communication and social skills, personal hygiene, cooking, cleaning and ability to use public transport â are more likely to be employed and to be better integrated into their communities than those with poorer skills. Nevertheless, little research has so far investigated adaptive functioning during the transition to adulthood for people with autism.
Lord concedes that one major problem with young adult research is the difficulty in defining what constitutes a âgood outcomeâ for a young person on the autism spectrum. A bright young woman with autism might find a job which does not match her academic qualifications. âHowever, should this automatically be deemed poor outcome â even if the woman is happy in her job?â6
New research published in the journal Autism Research in January 2018 did suggest that many middle-aged adults with autism had little independence. The study, conducted by the University of Wisconsin-Madisonâs Waisman Centre, derived from Professor Ed Ritvoâs mid-1980s survey of autism prevalence in Utah involving 489 people.7 The Wisconsin researchers contacted the 305 people from that survey who either met criteria for autism as children or would meet current criteria based on their medical records. Of the 305, 162 people or their caregivers responded. Of these, 127 had intellectual disability, and 128 were men. Only 38 had full- or part-time jobs. Others had a âsupportedâ job or were otherwise considered to have an âoccupationâ because they volunteered, attended a day programme or worked for minimal pay at a sheltered workshop. The remaining 30 people (20 per cent), were unemployed. Surprisingly, landing a job did not track with intelligence: of the 38 employed individuals, 10 had IQ scores below 70, and of the 24 unemployed participants for whom the researchers had IQ scores, five scored in at least the average range.8
It is important to note that autism diagnostic criteria were stricter in the 1980s than they are today. As a result, the participants were likely to have relatively severe autism features. Nevertheless, the findings appeared to align with the âeveryday realityâ of todayâs adults with autism, according to Dr Shaun Eack, professor of social work and psychiatry at the University of Pittsburgh. He said this was âone of the first systematicâ studies of housing and employment among people with autism in the United States.
The results of the study also indicated that many adults with autism lacked autonomy. For example, 44 per cent had a legal guardian. Only 9 per cent lived in a home they had purchased themselves or in their own apartment. The same proportion lived in an institution. And 35 per cent lived in a group home, supported apartment or other supervised living situation. The remaining 47 per cent lived with family.9
Some researchers warned against using standard measures of job (or relationship) success for people on the autism spectrum. âWhat these rating systems generally donât do a good job at is understanding how good the fit is between the personâs situation and what that personâs ability level is and what their own goals are,â said Dr Paul Shattuck, associate professor at the A.J. Drexel Autism Institute in Philadelphia. People with autism and their families should be allowed to set their own goals â and measure achievement based on those, he added.11
There have been a number of studies around the world demonstrating the economic impact of autism spectrum conditions. The largest research study of autism and employment in the UK was published in 2017. Martin Knapp and colleagues, reporting for the National Autism Project (NAP), wrote that, among autistic adults aged 55 or over, 41 per cent had been unemployed for more than 10 years. Among autistic people out of work, 59 per cent did not believe or did not know whether they would ever be employed.12 Nevertheless, 70 per cent of autistic people without learning disabilities would like to work, as would 65 per cent of people with learning disabilities (including autistic people).
The same 2017 NAP study found that individuals with autism were more likely to be employed if they came from households with a higher family income, higher parental education, if they were male, had higher social skills, an absence of learning disability, higher educational qualifications, had received career counselling in school and received post-secondary vocational training.13
The authors of the 2017 report also noted:
