Recently, a family friend updated my wife about her young adult son who has relatively high-functioning autism. His current situation is reasonably illustrative of the realities for many individuals with similar attributes. He lives alone, has no job, and limited social life. So while the media prefers to focus coverage on the sometimes surprising talents of particular individuals with autism, or of late, on whether the diagnosis of Asperger's Syndrome should be included within or kept distinct from the broader diagnosis of autism, the most fundamental problems confronting the vast majority of young, and even not-so-young, adults with autism-related disabilities are left unaddressed. Across a range of cognitive and communicative abilities, particular challenges arise, in relation to social life, employment, housing, and health care.
By diagnostic definition, most individuals with autism have difficulties initiating, establishing or maintaining interpersonal relationships. Not surprisingly, therefore, many young adults with autism, whether they live with their parents or independently of their nuclear families, are socially isolated. Local agencies responsible for those with developmental disabilities typically provide little to no support for socialization or recreation. Unless an enterprising private citizen or group of such citizens (usually parents of an affected individual) steps forward, the social and recreational opportunities for adults with autism remain severely restricted. With modern tools of communication and the considerable energies of many parents, siblings, or other family members, the relevant government agencies could at least more effectively coordinate such efforts. Better yet would be some degree of tangible support.
While the present the employment picture is rather depressing for adolescents and young adults (and for many others) in general, it is especially so for individuals with autism. Employment prospects for young adults with autism are particularly problematic if one is talking about what are referred to as "competitive" positions, as opposed to jobs in sheltered workshops. For individuals with autism who are verbal and have substantial cognitive abilities, such sheltered jobs would be deathly boring and frustrating. Nevertheless, without the requisite social skills, obtaining any position commensurate with ability is extraordinarily difficult. I know of a young adult in my area with an undergraduate engineering degree from a major state university who has been unable to find any job after looking for close to three years.
Although some government agencies provide job coaches for young adults with autism, many job coaches are ineffective. I heard of one young adult with autism who has a competitive job, but his parents have had to pay for both a job coach and a job coach for the first job coach. The end result is that the parents pay more for the job coaching than their son earns. Government and private agencies devoted to assisting those with disabilities will need to develop more effective and creative approaches to finding and maintaining employment for this population if this picture is to improve.
Housing options for adults affected with autism-related conditions and who require some supervision or support are quite limited in most communities. The result is that many such individuals live in situations where their minimal needs are not met. There is probably no solution that will be equally suitable for all affected individuals, but an integrated campus with trained staff members, on-site meal service, and recreational facilities could do much to provide many adults coping with autism a higher quality of life: healthier food and better health care, more recreational opportunities, and greater access to the transportation necessary for employment. Another positive step would be a greater degree of financial reciprocity among states and counties so that individuals with unique companionship needs would have greater opportunity to find the most suitable co-residents.
Once individuals with autism graduate from high school, their access to services and support programs declines substantially. In many localities, there may be numerous health care professionals who will treat those with autism, but there is in fact a paucity of physicians, psychologists, and other specialists who actually have useful skills and insights to offer, claims to the contrary notwithstanding. Furthermore, the characteristics widely associated with autism can hamper diagnosis for routine medical problems. I know of a young adult with autism whose acute appendicitis was transformed into chronic appendicitis after the appendix burst and re-sealed. This young adult had visited several physicians about abdominal pain but they failed to diagnose this routine but serious condition. Centers devoted to continuing and coordinated care for those with autism would represent a major advance over the current situation dominated by numerous unproductive visits to health care professionals and fragmented care even when the involved professionals are competent.
Current policies and practices usually condemn adults with autism to constricted lives of mostly sub-optimal choices. Progress on the core deficiencies identified above will have to be achieved if the majority of adults with autism are to have even a modest chance for reasonably fulfilling and productive lives. Continuation of the status quo will represent a moral as well as a policy failure, as warehousing should be for consumer goods, not people.
The opinions expressed above do not reflect official views of the institutions with which I am affiliated.
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