Arthur Webb Book Leaderboard
Spectrum Innovates Pathway Program

Adults on the Autism Spectrum: An Unidentified and Forgotten Population

Among all those on the autism spectrum, adults get the least media attention and receive the fewest services, supports, and resources of any kind. This is ironic when one considers that adulthood constitutes most of the human lifespan, so that the vast majority of individuals with autism clearly are adults. Unfortunately, since most of the autism spectrum was not recognized in the U.S. until 1994 and there was hardly any public awareness until the mid-2000s, very few of today’s adults with autism over the age of about 35 were ever identified, let alone diagnosed. They constitute a substantial population largely unknown both to society and to themselves. Until recently only the most severely impaired were recognized, and of those only a minority received appropriate services or supports of any kind. For younger adults, who are more likely to have been diagnosed, the situation is not as dire but still leaves much to be desired. The fact that, in most states, benefits and services end upon reaching adulthood (usually at age 21) means that adults on the spectrum are often left without supports.

The bad news is that, with improved diagnostic methods and increasing public awareness, the number of adults identified on the autism spectrum is rapidly rising, and will continue to increase dramatically. In the U.S., with a population of 320 million, an incidence of 1 in 68 results in about 5 million individuals with autism, most of whom are adults. As they get older, many will have greater need of benefits and services at a high cost to society. The good news, however, is that a high percentage (probably a large majority) who are less impaired can attain the levels of skill that they need to live in the world independently with fewer supports and much lower costs to society and the taxpayer. I strongly believe this to be the case.

Many challenges adults on the spectrum face occur in daily living. For individuals with autism, who often have trouble with changes in routines, the transition to independent living can be very demanding. Learning the requisite skills may be difficult, and incorporating them into their lives can be a substantial hurdle. What is usually overlooked, however, is that most activities of daily life are periodic routines which are performed daily (e.g., food preparation, personal hygiene), weekly (laundry, housecleaning), monthly (rent, bill-paying), annually (filing tax returns), or at a regular interval as is necessary. One thing that individuals with autism are usually very good at is following repetitive routines. Once a person on the spectrum learns these routines, chances are high that they can maintain them for the rest of their lives. This makes the dream of independent living more likely to be reality. I am reminded of the old Chinese proverb, “Give a man a fish and you feed him for a day; teach a man to fish and you feed him for life.”

Early intervention in childhood is considered the most important factor in attaining positive outcomes for individuals with autism. I believe this is also true for adults in that early preparation, for some aspects of life that are usually ignored in the educational process, needs to be provided to young individuals with autism before they reach adulthood. In particular, issues of socialization and daily living need to be explicitly addressed by the time a person with autism is in high school, if not middle school. Education in many aspects of daily life is nothing less than essential. These include personal hygiene, clothing and dress, food and diet, household maintenance and housekeeping, financial management and budgeting, and other practical matters. Social skills and socialization issues include getting along with others, being part of a group, meeting people, making friends, and finding and maintaining romantic relationships. Most importantly, this needs to be done for everyone on the autism spectrum, regardless of academic or other ability, and with all degrees of autistic impairments ranging from the mildest to the more severe. The level of instruction can be tailored to the abilities and challenges of an individual, but it cannot be neglected in any case. The costs involved will be minuscule compared to the later costs of providing services to adults who are not able to do these things for themselves.

There is a common belief that people “pick up” these things naturally and that there is no need for explicit instruction in those areas. The result is that such education is only made available to students with intellectual disabilities. There is also a common prejudice that people with academic ability (these are known as “twice exceptional”) or unusual talents (which are very common among individuals with autism) should have no significant difficulty learning these things, generally considered much easier than the areas where they excel, with at most an occasional short-term setback. Individuals with autism as a whole are very poorly served by these misconceptions, and usually need just such instruction in precisely those areas – sometimes throughout the lifespan. These erroneous ideas need to be discredited once and for all.

Not being diagnosed until age 44, I lived most of my life not understanding the nature of my challenges, and had very few of the supports that would have helped me so much. One thing that inadvertently did help me on the path to independence was the experience of living on a college campus. Usually seen mainly as a convenience provided to students, this in fact served as a transitional assisted living arrangement which greatly eased my subsequent move into an apartment after I graduated and started working. Individuals with autism who have the ability and opportunity to attend a residential college should take as much advantage of this as possible. Nowadays, more institutions provide special services for students with autism as well. There is no doubt that many undiagnosed adults with autism, like myself, made the transitions and attained the skills to live independently even in the face of remaining challenges. Still, to this day I consider my own basic daily living skills to be little more than rudimentary.

Individuals with autism also have difficulties finding and keeping employment. Having a dependable source of income is prerequisite to living independently, so this needs to be treated as a high priority. Once again, young people on the spectrum need to be advised on realistic career options. This should be based on areas of specialized ability and interest considered jointly with skills that are currently in demand and expected to be in the future. I strongly believe that our unusual talents and highly-focused interests offer the best hope of successful employment for adults on the spectrum. In practice, this means that appropriate vocational or career training at either the secondary or post-secondary level may be preferable to the popular ideal of a four-year liberal arts college. For a young individual on the spectrum with circumscribed interests and restricted areas of ability, such an education may be of limited effectiveness – especially at that age. They would be better served by preparing for occupations which they might succeed at and find gainful employment in. For those who genuinely wish and are able to pursue higher education, future employment prospects must be an important consideration during their student careers. I attribute my own employment success to having pursued autistic perseverations (not known as such at the time) with anything electrical or mechanical, through later interests in physics and mathematics, then attending an engineering college, and becoming an electronics engineer.

For adults on the spectrum who were never identified, these needs must be addressed by other means. One of the best things that can be done for adult individuals with autism is to provide them with diagnoses, along with as much information about autism and its effects on their lives as they can possibly absorb. Although this ideally is a formal diagnosis, such is often not realistic or even possible. Evaluating an adult on the autism spectrum is among the most difficult diagnostic procedures. It is very expensive – unaffordable for many – and there are long waiting lists as well. Fortunately, there are readily available means of informal or self-diagnosis. The Autism Spectrum Quotient, a self-assessment developed by psychologist Simon Baron-Cohen, is accessible online, as are other resources (http://www.autismresearchcentre.com/arc_tests). These need to be widely publicized so that anyone who suspects they might be on the spectrum, or who is suspected by a family member or friend, can gain valuable insights and find measures they might take to improve their situation. Because I was diagnosed at a late age, this knowledge was nothing less than life-changing. I thought about the countless experiences that had long perplexed and baffled me, and was able to make some sense of them. Also, I now knew what the challenges I faced were and was better able to address them.

For those who had no instruction in daily living and social skills, much more needs to be done as well. Educational aids of any kind are of great utility. Books, videos, and other resources that address these issues at various levels are marketed by various autism publishers. What would be of truly great benefit, however, are widely-distributed materials that provide explicit instruction in all areas of daily living and socialization. These should be at a level accessible to anyone regardless of ability, and made available to everyone who can benefit from them – especially newly-identified adult individuals with autism. The educational films and pamphlets used in public schools through the 1950s and 60s, while too dated to be useful, may serve as a model for more contemporary aids that can be developed and disseminated as a public service. Nowadays, they could also be made available online. Once again, the cost of such a measure is negligible compared to the benefits and reduced costs to society that it would provide.

Appropriate continuing education should also be made more available to adults on the spectrum, especially vocational training for those with employment challenges. Learning for personal growth can also be of great value to adults; this can take the form of traditional classes, recorded video lectures, or online courses. It can serve both to pursue specialized interests and to broaden one’s horizons later in life, which in turn can help with socialization. I have actually done this, as have a number of other adults that I know. Social and support groups for adults are also essential to our community and, though steadily increasing in number, many more will be needed. I have both attended and facilitated such groups for many years. In the work environment, the supports most needed are for navigating the “hidden curriculum” and social aspects of the workplace.

Because we develop so many coping mechanisms over the course of our lives, not to mention the knowledge and skills that we acquire over the years, autism is usually not a degenerative condition. If anything, many on the spectrum are able to deal with our challenges more effectively as we get older, and some of our impairments become less severe with age. This offers great hope for the many adult individuals with autism in our society who are becoming a larger and larger population. We need to stand up and be counted to get the supports we need to be as much a part of our communities as we can.

 

For more information, Karl may be contacted at kwittig@earthlink.net.

Have a Comment?