Transition to Adulthood: Many Difficult yet Essential Challenges for Autistics

As a group, autistics are well-known for having difficulty with many kinds of changes in their lives. The transition to adulthood constitutes one of the most difficult and, at the same time, one of the most important that most people ever make. For autistics, then, this transition usually presents challenges that are often very difficult and even formidable. Ironically, these challenges largely involve skills that society expects everyone to develop innately and effortlessly, and thereby provides the least amount of instruction, accommodation or support to those who are deficient in such.

As an unidentified twice-exceptional student (many years prior to my autism diagnosis), I recall being aware of how greatly inadequate my otherwise academically-rigorous education was in preparing me for many important aspects of life, particularly socialization and daily living. Following my diagnosis, I learned that these are the most common areas of difficulty for most autistics. I subsequently observed that their greatest challenges involve things that are rarely (if ever) taught in schools, or anywhere else for that matter.

Karl Wittig, P.E.

Karl Wittig, P.E., Advisory Board Chair

Preparation for adulthood requires, perhaps foremost, the development of daily living skills. The skills for maintaining a residence and tending to the fundamental necessities of life are clearly essential for living independently. Also required are not only the formal training for one’s occupation or profession, but the interpersonal, social, and communications (implicitly nonverbal) skills needed in the workplace. I should note here that, in a recent TV news interview, the CEO of a major employment website made the point that these three areas are exactly the ones that employers are most looking for nowadays. These skills are, for that matter, required in just about every aspect of adult life, be it finding friends, romantic partners, or other companions; participating in communities that one belongs to; or interacting with organizations and institutions of any kind. Instruction in these areas is probably beneficial for just about everyone, but it is nothing less than an absolute necessity for those anywhere on the autism spectrum.

Independent and Daily Living

For autistics, who often have difficulty with changes in their regular routines, making the transition to independent living can be very demanding. Learning the requisite skills can be challenging in itself, and applying them to their lives even more so; this has long been known to be the case. Learning to deal with unexpected or unfamiliar situations presents still more significant challenges. What is not often considered, however, is that most activities of daily life are periodic routines that are performed daily (e.g., food preparation, personal hygiene), weekly (laundry, housecleaning), monthly (rent, bill-paying), annually (filing tax returns), or at other regular intervals. Autistics are known for being very good at following and adhering to repetitive routines. If a person on the spectrum can overcome the hurdle of learning and mastering these routines, even at the most rudimentary level, it becomes much easier to incorporate them into their lives and thereby live independently with far fewer (if any) supports than would otherwise be necessary.

As such, explicit instruction in these areas needs to be provided to young autistics before they reach adulthood. It can be done in a school setting, in the home, through appropriate support services, or by professionals who understand the needs and challenges of autistics. In particular, personal hygiene, clothing and dress, food and diet, home maintenance and housekeeping, financial management and budgeting, and other practical life matters have to be addressed. This must be done for everyone on the autism spectrum, regardless of cognitive intelligence, unusual abilities, or degree of autistic impairment. It also needs to be done in advance of actual transition to adulthood (i.e., graduation from high school). The level of instruction should be tailored to individual autistics, but it cannot be neglected in any case. In particular, the commonly-held belief that any person of minimal or higher intelligence can learn these “on their own” needs to be permanently discarded. Although some costs may be incurred in providing such instruction, they will be miniscule when compared to the lifetime costs of providing supports and services for autistics who are not able to live independently.

For autistics who are able and want to attend college or university, the experience of living in campus housing provides an excellent opportunity for developing daily living skills. In this environment, the student has to be responsible for some activities of daily life (e.g., personal hygiene, cleaning one’s room, doing laundry), while others are often supported by the institution (household maintenance, food preparation). This can greatly serve to ease the transition between fully supported living (e.g., at home) and subsequent independent living where one becomes responsible for all daily living activities (as was the case for me, even though as an undiagnosed teenager I did not appreciate it at the time). For those in need of more intensive supports, many institutions now provide such services for students on the autism spectrum. In any case, it is in the best interest of autistics who have access to such opportunities to recognize their value (or have it emphasized to them), and take as much advantage of these as they can.

Driving and Transportation

One very common area of autistic challenge involves learning to drive a car. Historically, an alarmingly low percentage of autistics are even able to drive. While this may not be a significant problem for those who live in large cities with extensive mass transit systems, it is far more serious for anyone living in suburban, small town, or rural areas where public transportation ranges from minimal and infrequent to nonexistent. Consequently, transportation independence in such locations requires the ability to drive. As such, autistics who cannot do so need to depend on others (family, neighbors, friends, or services for the disabled if such are even available) to get anywhere (school, work, dining, shopping, social activities, medical appointments, meetings with service providers, etc.). This can place significant restrictions on the lives of autistics and considerable burdens on those providing transportation for them. It is therefore in everybody’s interest to provide autistics with driving skills wherever at all possible.

Having faced challenges of my own when learning to drive (a story onto itself), I eventually recognized that these were mostly due to poor gross motor skills (coordination), limited awareness of much of my environment, and deficits in executive functioning (needed for rapid response to unexpected or hazardous situations). All of these are well-known and common challenges for autistics. It should not come as a surprise, then, that many will have great difficulty learning to drive, even when they are able (sometimes effortlessly) to learn the “rules of the road” and pass the written driving test.

Innovative programs to teach autistics how to drive have recently been developed, and these need to be implemented as widely as possible. Furthermore, existing driving instruction programs, including driver’s education classes in high schools, need to be expanded to provide “remedial” assistance for autistics and others facing comparable challenges in much the same manner that such instruction is provided in reading, English, math, etc. for academically deficient students. For autistics who live in regions with adequate mass transit, programs to instruct them in its use have also been developed (it is ironic that more than a few autistics, particularly those interested in rail transportation, will know the routes, schedules, and other aspects of the system better than most transit employees!). This is yet another essential skill that has to be taught whenever needed. Once again, the lifetime benefits in these areas will greatly exceed the small immediate costs.

Social Skills and Socialization

Typical socialization challenges for autistics include getting along with others, being part of a group, meeting people, making friends, and finding and maintaining romantic relationships. These skills are essential in just about every aspect of life, be it school, work, community, independent living, or just about any of the things that, for most people, even make life worth living. Consequently, deficits in these skills can have adverse consequences resulting from social marginalization, isolation, or ostracism; ranging from academic difficulties for those in school (including failure), workplace problems (up to loss of job), exclusion from communities, and the inability to make friends or find romantic partners. These in turn can result in anxiety, stress, mild or severe depression, and in some cases even suicide.

As with daily living, socialization skills are rarely if ever taught explicitly; once again, such instruction needs to be provided to all autistics as early as feasible and well in advance of transition into adulthood. Also, as before, the notion that these skills are instinctive or “acquired naturally” needs to be eliminated entirely, especially for those anywhere on the autism spectrum. The cost of not doing so in the lives of autistics is clearly without measure here, as it cannot even be quantified financially.

Employment and Work

Autistics often have difficulties finding and keeping employment, yet a regular source of income is essential for independent living. Young people on the spectrum who are approaching adulthood need to be well-advised about their career options, and make educational plans to further these objectives as much as possible. Choices should be made by considering areas of strong ability and interest (typical of autistics), combined with current and expected future labor market demands (which can change very rapidly these days). In particular, vocational, career, or professional training that leads to potential employment should be emphasized over pure liberal arts education. At the very least, coursework should be planned with as much consideration given to future job prospects as possible. I attribute my own employment success to pursuing autistic perseverations (not known as such at the time) with anything electrical or mechanical and interests in physics and mathematics, attending an engineering college, and becoming an electronics engineer.

Finally, autistics nearing adulthood have to be prepared for aspects of the work environment other than the formal skills and knowledge base required for their job. In particular, they need to be taught about the interpersonal and social aspects of the workplace – most significantly the “hidden curriculum” of unwritten rules, the violation of which can have adverse consequences ranging from a very unpleasant work environment (at best) to termination (at worst). Formal education, including vocational training, rarely if ever addresses any of these issues. As such, autistics need to be prepared for them as much as possible in advance of entering the workplace as they transition into adulthood. This is yet another area where the cost of providing instruction dwarfs the cost of having to support unemployed autistics who could otherwise be productive, tax-paying contributors to society.

Karl may be contacted at kwittig@earthlink.net.

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