Having been diagnosed late in life at the age of 44, I lived for the better part of my life on the autism spectrum without myself or anyone else being aware of it. During the time in which I finally knew about this, I was already an older adult and, most recently, a senior citizen. Unlike so many autistics, however, I was able to have an occupation and career, live independently, and retire without the need for caregiving at any time as an adult. As such, I have become aware of the types of challenges and difficulties often faced by autistics when they must care for themselves. Because of our autistic differences, however, quite a few of these are unlike those faced by typical adults, even though there may be some similarities.
My own life experience shows that it is possible for some (hopefully many) on the autism spectrum to live independently with minimal if any need for caregiving. Although my situation is not very common for much of the autism community, I need to emphasize that, even though I was very fortunate in having gainful employment that enabled me to live independently without need for supports, many autistics of comparable or even greater intellectual ability and educational accomplishment have not been nearly as lucky; they were often not able to live independently, thereby needing support and even caregiving for much if not all of their lives. Given the realities of the age that we live in and the increasing estimates in the number of autistics, it is essential that those who are capable of living and aging independently be able to do so with a minimum of caregiving. I will try to provide a few insights into what must be done to attain this.
As a younger adult, the transition to independent living was greatly eased by my having lived in a college dormitory as a student. Such an environment provides a gradual transition between living at home, where one’s needs are provided for, and many daily living skills not required, to a situation where one is completely responsible for such. While such a gradual adjustment is certainly helpful for any young adult, it is nothing less than essential for autistics, who have well-known difficulties with transitions of any kind. Because of this experience, I was able to gradually acquire the basic skills needed for daily living, even though for me these were little more than minimal. At least, though, I could take care of my needs without the benefit of caregivers or other supports. It also helped that in a few areas (household finances, tax preparation, basic home maintenance and repairs), I was able to do for myself (and sometimes others) what many people often hire someone else to do, as these were within my specialized areas of ability – I am an electronics engineer who was always good at math and fixing things. One particular challenge for me, common to many autistics, was learning how to drive a car. I successfully accomplished this, but not without considerable difficulty. How I managed to do so is a story unto itself. Nevertheless, in a society with limited public transportation, this is an essential skill if one is to live independently. Appropriate instruction needs to be made available to autistics of any age who need it.
Unlike many autistics, I was actually married and, more generally, in a long-term relationship for the two decades prior to my autism spectrum diagnosis. As it happens, this was not a conventional relationship, as there was a significant age difference (she was older and had spent years in a religious order) – a situation not uncommon among autistics. Many of my challenges, as they were, had heretofore been attributed to experiences growing up, or else regarded as eccentricities and personal peculiarities. After knowing me for a short time, however, she made a number of (correct, for once) observations about these issues, such as my near-total obliviousness to much of my social environment, and the fact that I was completely unresponsive to hints of any kind. Both of these turned out to be important clues for my subsequent diagnosis, but that was still many years in the future. In any event, I had someone who provided supports in my areas of deficit (even if she was not always happy about it), especially those involving interpersonal and social skills, which like most autistics I was always deficient in. More specifically, she would often point things out that I was unaware of and clue me in as to what I needed to do (or not do, as the case may have been) in many situations. In some ways, this was similar to a person who covers for a partner with a deficiency in literacy or other comparable challenge, except that in my case there was no identified condition. Also, my deficits in basic life skills were mitigated by the fact that she helped with many of these things.
Sadly, she passed away less than a year prior to my autism diagnosis; it is a shame that she never learned just why I wasn’t always the easiest person to live with, as she had sometimes observed.
After she passed away, I found myself having to take care of all my daily living activities. Although by that time I was capable of doing so, it was nevertheless not easy, as my skills here still left something to be desired. I actually asked some friends to look around my apartment and determine whether I had everything that I needed. Over the years, I had learned to shop for such essentials as food and clothing – the latter has always been especially challenging for me, and the fact that I barely cook was mitigated by severe selective eating issues (again, not uncommon for autistics, although mine are especially bad) which resulted in my having a “children’s menu” diet (i.e., no culinary skills to speak of were needed here). I could do basic housekeeping tasks but took my laundry in to a local establishment (necessitated by being busy working full-time at an intellectually demanding job).
Once again, it is not unusual for people to have difficulties with some aspects of daily living after the loss of a spouse, especially if they have been dependent on them for many years, but this typically happens with senior citizens; I was only 43 years old at the time. Once again, I was fortunate to have attained even this level of competence – many autistics are not able to do so and may need supports and caregiving for much if not all of their lives.
Within a year, however, I was finally diagnosed with Asperger Syndrome (this was in late 2000). Because I was gainfully employed and had (barely) adequate basic living skills, there was never any question about my needing support or caregiving services, nor did I have to ask for any accommodations at work (I never even disclosed this condition to my employer). The diagnosis was of value mainly for finally understanding so much of my life and the nature of the challenges that I had faced. Still, the importance of such cannot be overemphasized.
Where I was able to find some support, however, was within the autism community itself. I started regularly attending Aspie group meetings (which I have been doing ever since), read every article (print and online) and book that I could find, and attended any talk, workshop, or conference that I could get to. All of this helped me to better understand the condition I had been living with for so many years, the deficits and challenges that it presented, and what I could do to help me mitigate or get around them. As before, I was able to do for myself what many autistics need others to do for them.
Becoming a Senior Citizen
Living past a certain age presents challenges for most adults, especially in a society where they must largely fend for themselves. For autistics, yet again, these can be even more formidable than for a typical person.
In our society, pensions, both public (e.g., Social Security) and employer-based (becoming much less common) are often available to retired individuals who have a specified work history, as are health and medical benefits (e.g., Medicare). The latter are also available to those who have a qualifying disability. In any event, adequate resources are needed if one is to age independently without need for caregiving. Consequently, planning for such must begin at the earliest possible time. Given the realities of the present day, it is essential to ensure that some form of income will be available later in life if one is to avoid, for as long as possible, the need for senior care which, in our society, is often quite dismal. As before, these issues are of concern to just about anyone, but for autistics they are of even more paramount importance. In particular, some form of health benefits must be available, since we as a population are susceptible to a variety of unusual health issues.
In my own case, I was lucky to have had a job that had provided me with a good income as well as retirement benefits (largely through employer savings plans). As such, I could rest assured that my basic needs could be met. Also, I purchased my own health insurance (through a state marketplace) until I qualified for Medicare. What has always been challenging for me, however, is the complexity of navigating our ever more complicated health care system. This can be daunting for anyone, but the byzantine and irrational practices of the health insurance system can be especially perplexing for autistics who generally have a need for predictability and order. Even the search for adequate health care providers, particularly appropriate medical specialists, has become very convoluted indeed. Autistics can use whatever help we can get in these areas.
When considering my living situation (I recently moved to a new apartment), I evaluated prospective neighborhoods in New York City, where I have always lived, in which all essential needs are available within walking distance. Although I had driven a car for years when working, this would have been more difficult during retirement; I would have needed to park and maintain a vehicle, which in New York City is not easy. Furthermore, If I became unable to drive for any reason (not an unusual problem for seniors), I would become dependent on others for transportation – a situation I wanted to avoid at all costs. Consequently, I looked for a living situation in which all essential shopping, eating, and services were readily available at as short a distance as possible, and accessible either by foot or public transit.
Living as a Senior Citizen
Among my other considerations in finding a new apartment was the avoidance of “senior downsizing.” Like many autistics, I tend to keep a number of unusual collections. Unlike many seniors who can part with numerous items that had been kept mainly because of associated memories (difficult as this may be) or simply reluctance to dispose of good or useful items that were no longer needed, autistics are very attached to anything that pertains to their special interests, and the prospect of eliminating such is simply not acceptable. Consequently, I needed as much space as I could get. This meant finding a larger apartment (than the one I had lived in for 45 years!) in a less-expensive area, where I could keep my collections of old, vintage, and antique electronic, scientific, and mechanical equipment (and even have room for a workshop), along with all my books (mainly nonfiction) and videos (largely documentaries and academic lectures). As a retired senior citizen, these become especially important because they provide activities to keep me occupied. Also, like many autistics, I do not have conventional interests, particularly those typically ascribed to seniors.
As to socialization and finding community, this presents a substantial challenge. Looking at senior centers in my vicinity, I found that, while they certainly provide community and social activities for older adults, most of these are of no interest to me, and I would likely not fit into such an environment. In contrast, many things that are of most interest to me are generally solitary in nature. It is generally difficult for autistics to balance the need for community with their specialized interests and unusual preferences. In the meantime, my involvement with the Aspie and autism spectrum communities has provided me with some degree of such.
An important concern for older adults nowadays is the proliferation of scams and con artists. While these have existed since time immemorial (perhaps all human history), the ubiquitousness of computers, smartphones, and the internet have created an explosion in an ever-expanding variety of these. Senior citizens are especially vulnerable to such, and thereby most often targeted, because they are more likely to live alone (hence lonely and even desperate) and less familiar with many scams that did not even exist until recently. This situation is even more serious for autistics, who, because of deficits in social cognition and theory of mind, are less able to recognize when someone is trying to deceive them. The best way to avoid becoming a victim of such is to become as familiar as possible with every form of scam, con game, and other trickery that is currently out there, and to be informed of new ones. I have found that AARP has a variety of articles and resources which are geared towards senior citizens but highly informative for everyone. Such victimization, horrific as it is for anyone, can be especially catastrophic for autistics who are totally dependent on limited resources for survival.
As an engineer with a broad background in technology, I am in a good position to recognize such scams, but even then I occasionally encounter one that I come frighteningly close to falling for. In my youth, I was very susceptible to individuals who liked to play a variety of tricks on me, and would often do so, not to mention those who would use or otherwise take advantage of me. Ironically, because of these experiences, I subsequently became very wary of anybody who tried to deceive me. All of this has helped me avoid such situations with a considerable degree of success. It is absolutely essential for all autistics, particularly seniors, to become as educated as possible in these matters.
What Can Be Done?
Because, by definition, anyone who was past a certain age by the time autism spectrum diagnoses finally became available will at best have been diagnosed later in life (as was the case with me), it becomes essential to at least try to identify as many of these individuals as possible, so that their needs can be correctly identified and addressed to the greatest extent possible. In the meantime, whatever education, training, and supports are needed by younger and newly identified autistics must be provided as much as possible, so that they can eventually live independently to the greatest extent that they can, and not require caregiving as they become older.
Karl Wittig, PE, is Advisory Board Chair for Aspies for Social Success (AFSS). Karl may be contacted at email@example.com.