By Teresa J. Foden | Interactive Autism Network
The ship descends on fiery thrusters, cushioned by a plume of methane gas, touching down on the surface of the strange planet. The hatch swings open and the alien crew files out, disembarking with a vague sense of shock and trepidation: Welcome to Earth (if you have autism, that is).
For many young people with autism, venturing out into the adult world is akin to Valentine Michael Smith's journey to the planet Earth from outer space in the 1961 science fiction classic Stranger in a Strange Land, by Robert A. Heinlein. 1? Like Smith, a human raised by Martians on Mars who returns "home" to Earth as a young adult, today's 20-somethings with autism often feel like strangers among their own species when they leave the legal protections afforded schoolchildren to enter the adult world of limited support services, long waiting lists, and scant funding. Those who become accomplished sometimes look back on their experiences to reflect on their sense of alienation in a society that doesn't look favorably on those who don't blend in easily.
Research into the experiences of adults with autism spectrum disorders (ASDs) is in its infancy, and many researchers who want to know more are going to perhaps the richest source of data available: the adults with autism themselves. Among those on the leading edge will be IAN Research, which is developing a series of questionnaires for adults with autism. The questionnaires are expected to go live online this year, and data gleaned from IAN families will be available to researchers investigating the experiences of adults with autism.
One of the most high-profile and prolific of these accomplished people with autism is author, professor, and public speaker Temple Grandin, Ph.D., who describes herself as an "anthropologist on Mars." In a paper featured in the book Asperger's and Girls, 2? titled "For Me, a Good Career Gave Life Meaning," she wrote: "As a young adult, some of the happiest days of my life were working in equipment design where I had to figure out how to design things. Using my mind...gave my life meaning.
"Unlike most people, I am what I do rather than how I feel." 3
'Grokking' the third planet from the sun
*grokking, a Martian word generally meaning 'gaining complete comprehension'
One 2005 study 4? focused on the discussions at three separate social group meetings for adults, ranging in age from 22 to 49, with ASDs. Investigators found many real-world examples of experiences perhaps summed up best by Thomas McKean in his essay "A Personal Account of Autism," published in the book Asperger Syndrome or High-Functioning Autism? 5? As quoted by the investigators of the 2005 study, McKean likens his experiences with autism to that of "a space probe on an alien landscape, feeling ill-equipped to process the information he is receiving from a foreign and confusing social world."
The common thread running through the social group's discussions was a sense that autism's social impairments, some of which may seem superficial in many of those with high-functioning autism or Asperger's syndrome, permeate virtually every aspect of adult life: initiating intimate relationships, developing rewarding friendships, and sustaining challenging, fulfilling employment. Adults with autism are inclined to flounder in the face of ever-shifting social conventions, a tendency that can be particularly debilitating in the workplace. An employee's lack of social prowess can make all the difference between success and failure, eventually limiting advancement opportunities, salary, or duration of employment. Studies and anecdotal reports from adults with ASDs describe social blunders with supervisors and coworkers, an inability to discern the political winds in the office, and struggles with recognizing and defusing interpersonal conflicts, any of which could lead to job loss.
"Young women and men know how to 'do school.' After all, they have been in school for most of their lives. But they often don't know how to negotiate the complicated world of work.... Their inefficient nonverbal and verbal communication skills can interfere with every aspect of work, from the interview on," according to "The Launch: Negotiating the Transition from High School to the Great Beyond," 6 another essay featured in Asperger's and Girls.
'Houston, we have a problem'
On the surface, the issue of employment might appear to be easily addressed, given that government-funded employment support programs for other populations of adults with disabilities have been in place since at least the mid-1980s. However, many of these programs have been chronically under-funded and understaffed. The current limitations of these programs are only emphasized by the lack of expertise in ASDs. Both low- and high-functioning adults with ASDs need employment support, but like many others with disabilities, those seeking public assistance are likely to encounter a shortage of services and long waiting lists. As summed up by a 2004 article published in the United Kingdom: "People with Asperger syndrome often find themselves in a maze guided by disability specialists with limited knowledge of the disorder." 7
As a result, many adults with ASDs are falling through the service gaps. They wander from job to job, often dismissed because of miscommunication and misunderstanding stemming from the social impairments central to their disability. Others cling to employment for which they are woefully overqualified in terms of education and IQ, and many suffer from depression or anxiety disorders caused, or exacerbated, by their inability to find a good fit in the world.
Adults with severe autism are unlikely to reach a high level of independence or social functioning, according to a 2003 study in Canada. 8? As for those considered high functioning, the study says, they are likely to find themselves in jobs beneath what would be expected given their education. "These children can often complete high levels of education, but their functioning in adult life is severely compromised by their lack of social ability."
Without intensive support, high-functioning adults don't tend to achieve much more in the workplace than those who are more severely affected by autism, researchers say. Among the most common employment supports is a "job coach," usually provided by a local health services agency. This coach accompanies the employee to the job location, often daily for the first few months at least, and helps train him or her in job skills and in managing misunderstandings and conflicts as they arise among supervisors and coworkers. For high-functioning adults with disabilities, including some adults with autism, the goal may be to taper off the daily support from the job coach, with perhaps a coworker assuming the role of mentor and the job coach fading into the background and providing additional support only as needed.
Although some researchers consider IQ and degree of language impairment to be among the most important factors determining the long-term success of adults with autism, average to high IQ is clearly no guarantee -- especially when psychiatric disorders compound the person's disability. Although psychiatric resources were inadequate long before autism became prevalent, those very same resources will likely be called upon to become more "autism-friendly," according to the 2004 U.K. study.
A 2003 U.S. study of outcomes of supported employment found that despite chronic problems with staff turnover, low staff pay, lack of funding, and long waiting lists, participation in employment-support programs was on the rise in the United States. The researchers noted that participants received more support than in the past and experienced better relationships with coworkers. However, they concluded: "There are no real increases in wages or hours worked, two important areas for outcomes. In addition, there is no real change in the types of jobs people are acquiring. People are still largely receiving entry-level jobs in service industries." 9
The lack of investment in adults with ASDs is costly, not only for the families but also for society, according to two studies, one in the United States and the other in the U.K. According to the U.S. study, 10? the estimated total cost of providing care and treatment for a single person with autism, over his or her lifetime, approaches $3.2 million. Costs associated with young adults with autism, ranging in age from 23 to 27, soar to a level rivaled only by the costs for 3- to 7-year-olds with autism. One of the largest components of that cost: lost productivity.
"Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," according to the U.S. researchers.
The U.K. study likewise found high costs associated with autism, with estimates exceeding £2.4 million (about US$4.7 million) over the lifetime of one person with autism. 11 For an individual with high-functioning autism, the cost of lost productivity contributed 17.5 percent to the total cost of lifetime care and treatment, according to the study. "Autism is a costly disorder, not only in terms of resources used and forgone, but also in terms of the suffering of people with autism and their relatives."
Studies like these, and rising numbers of children and adults diagnosed with ASDs, have contributed to a growing sense of urgency among service providers, the community, and legislators. One of the most promising legislative initiatives in the United States is the proposed Expanding the Promise for Individuals with Autism Act of 2007 (EPIAA), which would provide about $350 million in new federal funding for community programs and services for people with autism -- including adults.
As one autism advocate put it: "This is an important and compassionate piece of legislation for many reasons, but perhaps most of all because it remembers those who are most frequently forgotten and that is the adults, be they 22 or 72, who are struggling daily with the challenges of autism." 12
'That's one small step for man...'
Failure to provide employment support to people with autism, or withdrawing it prematurely, can be "tantamount to neglect," according to the book Autism: Identification, Education, and Treatment. 13? "Sometimes, the support needs are not as obvious, because the behavioral and communication challenges are more sporadic and less noticeable. However, when they do occur, they can be job threatening in the short term, and lead to a sporadic history of job success over the long term."
Employment assistance may be short term or long term, with the highest costs likely to come at the front end of the process, when employees are most likely to require full-time oversight from a job coach or other government-paid staff person. But later, supervision may drop back to a visit once a month or so, with telephone calls and additional visits as needed. Enlisting the aid of supervisors and coworkers in training and mentoring, rather than having the job coach go it alone, tends to considerably enhance the job fit for the employee. One option that fosters involvement of coworkers is "job sharing," with the new employee sharing duties with a coworker who does not have a disability. The coworker takes on the role of mentor, providing training and support between visits from an agency job coach.
One social aspect that must be addressed with many people with autism is a misperception of the motives of others in the workplace, says Grandin in her article "Making the Transition from the World of School into the World of Work," posted on the Autism Research Institute's website (see Additional Resources). She says: "Many people with autism expect all people to be good. It is a rude awakening to learn that some people are bad, and they may try to exploit them. This is a lesson that an independent person with autism must learn. For people with autism who take lower level manufacturing jobs, the other employees should be involved and trained to help the person. The co-workers need to be trained to understand autism."
A good job fit saves everyone money in the long term: overburdened agencies save the high costs associated with providing coaches for employees in one new job after another; employers save the training costs that go hand in hand with staff turnover; and families save the cost of providing sole financial support for their adult children and siblings. Most of all, a good job fit makes for a more satisfied employee, resulting not only in a sense of personal fulfillment but also increased productivity.
An 'eccentric education'
Researchers who designed the study of the social skills group mentioned previously, which explored ASDs from the perspective of the adults themselves, asked a series of questions relating to work and social experiences. Discussions were far ranging, with some participants reciting cut-and-dried rules and others speaking as though they were researchers themselves, perhaps studying a foreign species, as illustrated in the following statement: "If they're staring or spaced out, that means they're not paying attention."
Group members said they use a variety of strategies to fit in at work, from following directions as closely as possible, to keeping a journal of feelings to enhance processing, to developing a sense of humor. When they were asked how they get along with people, responses ranged from "I try not to hit people and to not grab people and to keep your hands to yourself" to "Just be friendly and nice and real upbeat and be in a good mood and have a good attitude."
Participants found some questions puzzling, and resorted to rules to explain the unexplainable. To the question, "Why do some people object to people joining in on a conversation between them even if the conversation is not private?" one man stated, "Technically, according to manners that is not what you are supposed to do."
Another's explanation was based on close observation: "You have to look for a sound cue or look for hints that some people give to get in [the conversation] and are they going to get mad or is this something you can get in on and it's not going to bother them. It's difficult."
Closing remarks from the Science Minister and...
ASDs are lifelong developmental disabilities. The children who needed support in school mature into adults who need support in the workplace and in society. Their ongoing struggles interacting with people can leave them employed in unsatisfying jobs that waste their talents and skills, or perhaps leave them unemployed altogether. Satisfying relationships are also out of reach for many adults with ASDs. Frustration and feelings of alienation leave many of them vulnerable to depression, anxiety, and stress-related disorders.
With estimates at more than half a million people aged 21 and younger with ASDs, researchers and professionals are taking a hard look at how they will fare as adults -- and at the cost to society when their potential is left to languish. Researchers of one study in Sweden, which found poorer adjustment than expected in men with Asperger's, captured the growing sense of urgency in their conclusion: "...given their good intellectual capacity, the outcomes must be regarded as sub-optimal. Medical, social and occupational services must find ways to achieve more individually adjusted solutions so as to be more successful in meeting the needs of individuals with autism spectrum disorders." 14
From the researcher, to the advocate, to the parent, it is generally agreed that more research needs to focus on how to best prepare the adult with ASD for the real world. Which early interventions stand the test of time? Which transition programs in high school transform adolescents into motivated and productive adults? Which services need to be tweaked, or expanded, to maximize adjustment in these adults?
The bottom line, from one of the participants in the autism social skills group, echoes the sentiments of those with other once-misunderstood disabilities that society has come to recognize as its own: "Just because you're handicapped doesn't mean you can't be a productive member of society."
In his essay in the book High-Functioning Individuals with Autism, 15 Jim Sinclair wrote of his experiences as a young man with autism entering the adult world. "...I needed an orientation manual for extraterrestrials. Being autistic does not mean being inhuman. But it does mean being alien. It means that what is normal for other people is not normal for me, and what is normal for me is not normal for other people."
Reproduced with permission of Kennedy Krieger Institute, Baltimore,