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.
Social Life
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.
Employment
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
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.
Health Care
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.
David Kirby: EPA Study: Autism Boom Began in 1988, Environmental Factors Are Assumed
Barbara Fischkin: A Miracle Group Home For My Adult Son With Autism
Shelley Hendrix Reynolds: Home Alone With Autism
Rebecca Walker: Areva Martin's Happy Family
True there are not enough services, jobs, housing. As well, one of the big challenges is that autism is a spectrum - you can't have one cookie cutter job or living situation or training. There are different needs - and different desires people on the spectrum have (and their parents) as to what they want.
The good news is that many states and communities are actively seeking ways to find solutions. In California there are Autism Regional Taskforces giving input to the CA Senate Autism Committee on ideas on how to improve services and provide housing and jobs, and training to people working with adults with autism. People are very willing to help and to learn - the real problem is: MONEY and budget cuts.
For me, it feels really strange to have a 21 year old (my son) needing services - I worked for two years at what was then called Fairview State Hospital in Orange County - I helped prepare the first group of young adults for de-institutionalization (to give live in group homes) following the passage of the Lanterman Act. Now, I am still trying to plan for my son's future.
Sod off. Adult autistics are not some ravening horde going to destroy society's infrastructure, and it's dehumanizing to discuss us as if we were.
Perhaps you think the social service infrastructure is adequate as is? If so, I disagree, I think it is broken.
Something has to be done so there will be more services for the Autistic kids and adults that are already here while continuing the search for the cause of this frightening condition.
Autistic people are so misunderstood and are the most special people on earth...
Look, we're not "special". And if you're afraid of our differences, that's your problem, not ours.
Xenia Grant
and need social services, housing , a whole array of v ery costly help. Health officials, political leaders etc have abeen silent about the autism epidemic for too long, but people will have to start listening now. It's a really scary future when the reality hits us in the gut and the pocketbook.
Maurine Meleck
"Most people with autism in CA are three to 18 years old so the problem of addressing their needs as they become adults will only grow."
"Besides their medical needs, the costs of their social services are great too. The California Dept of Developmental Services says the state spent nearly $11,000 in 2007 on services for each child and young adult with autism. After age 21, those costs more than triple when the state starts paying for food, shelter, and transportation expenses the parents used to pay for."
April 2, CBS42 in Montgomery AL had the report, Autism Awareness http://www.cbs42.com/content/health/story/Autism-Awareness/PsG3ioVKs0i620yIwhQQvQ.cspx
"In the last 10 years, the number of people in AL diagnosed with autism has increased by more than 3,000 percent."
Neil Greenspan ignored a critical point. Today, one % of children are autistic. Officials like to explain this as just better diagnosing. If that were true, then there'd be no need articles like these; autistic adults would go where they've always gone. This is stunning evidence that something new and dramatic is affecting our children.
Anne Dachel Media editor: Age of Autism http://www.ageofautism.com/
"In 1955 the census of the nation's state hospitals reached its peak of 560,000, and since then there has been a steady and dramatic decline to its current level of under 170,000—a decrease of more than 60 per cent (1). The reasons for this decline are several: the impact of the community mental health philosophy that it is better to treat the mentally ill nearer to their families, jobs, and communities (2); the effectiveness of newer psychopharmacological agents, especially the phenothiazines, in reducing flagrant symptomatology (3); the increasing importance of legal, judicial, and legislative actions in defining where and under what circumstances mental patients could be treated (4); and, most important, the shifts in funding opportunities under Medicaid, Medicare, and Supplemental Security Income that allowed states to shift the fiscal burden of the mentally ill to federal auspices if they moved patients out of state facilities (5). "
http://psychservices.psychiatryonline.org/cgi/content/full/55/10/1112
If I hadn't by chance picked up a book in which autistic adults wrote about their experiences at university and recognized myself in those stories, there wouldn't have been any diagnosis. See how easily adult autistics can get missed?