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Suitable Housing and Community Living: Autistics Face Many Unusual Challenges

Whether they can live independently or require assistance and support, autistics need resources to live in communities, of which they often want to be a meaningful part. First and foremost, adequate housing must be made available. Even for those who can live independently and find and maintain employment, or receive suitable benefits and subsidies, basic supports may nevertheless be indicated. Those who require assisted living will, at some point, need to be placed in appropriate facilities that can provide whatever supports are necessary. In either case, they will be living in larger communities that may consist of other autistics, individuals with various disabilities, or perhaps be neurodiverse. As such, they must be prepared and receive adequate support for the challenges most autistics face where interactions with others are concerned. Those providing assistive and support services need to understand these and other challenges, and generally be equipped to help autistics with their unusual needs. Autistics often have deficits and face difficulties that are far less common in other populations, and which affect their ability to live independently and become part of the surrounding community.

Karl Wittig, PE

Karl Wittig, PE

Housing Accommodations

Housing accommodations for autistics can vary widely and depend greatly on the level of self-sufficiency and independent living skills of the individual. Those having adequate skills can certainly be placed in conventional housing and may require little assistance. If they are gainfully employed, they should be able to live in any residence that they can afford and have the skills to maintain. Otherwise, subsidized housing or other benefits need to be made available to provide adequate accommodations. For such individuals, any deficits in daily living skills need to be remedied using whatever instruction or therapy is indicated. It has always been my belief that many autistics are more capable of such than is generally recognized, and greater efforts are needed to improve these skills as much as possible. Also, assistance with finding housing, which can involve the search for rental apartments or dealing with real estate agents, may be appropriate.

For those who are unable to live independently, some form of assisted housing is needed. Once again, this can vary widely depending on the challenges and circumstances of the individual. Whether these accommodations are exclusively for autistics or serve a broader population, the atypical needs of autistic individuals must be fully understood by those providing assistive services and met to the greatest extent possible. For example, autistics often have significant difficulties that otherwise comparable individuals rarely if ever have, especially where daily living, social skills, and other basic areas of life are concerned. These deficits need to be immediately recognized and accommodated or remedied when present.

Also, many autistics famously have regular routines that they insist on adhering to, strong preferences concerning personal items (such as clothing, in my case), a variety of sensory sensitivities (e.g., selective eating issues, as with me), along with very intense special interests and strongly preferred activities. All these considerations need to be respected and accommodated to whatever extent possible. This is in contrast with many assisted living facilities, such as those for senior citizens, which cater largely to more typical or common challenges and preferences, as well as more popular recreational activities. Many autistics, for whom these often vary widely from typical norms, are anything but well-served by such practices.

More significantly, waiting lists for such housing are typically quite long, with periods of ten years not being uncommon. Given the dramatic rise in autism rates among the general population over the past two decades, the number of residential units available for autistics needs to be greatly increased. Once again, assistance with finding the most appropriate and suitable residences for specific individuals will also be of great value.

Travel and Transportation

Closely related to the availability of adequate housing is that of adequate transportation. Outside of a few major metropolitan areas and large cities (such as New York, where I live) with good public transit, this requires having access to a car or otherwise being dependent on someone else who can drive you everywhere. For many autistics, learning to drive has always presented a significant challenge, even when they can afford the cost and expenses of an automobile. As such, some form of transportation needs to be made available to autistics whatever their residential setting.

If they are fortunate enough to live in a location served by public transit, they need to know how to access and navigate through the system, or else be instructed in such (ironically, more than a few autistics are greatly fascinated by and have extensive knowledge of their local transit system – they will need little or no help with this). Otherwise, provisions must be made for adequate transportation to all essential activities, such as work and medical or social service appointments, as well as recreational and social ones. For those who can learn to drive a car, driving instruction appropriate for autistics needs to become a high priority, given the high percentage of autistics who do not drive.

Recreational Activities

Recreation constitutes a significant part of life for everyone, including autistics. Many autistics, however, have unusual preferences in their choices of recreational activities and interests. As such, traditional group activities that are organized by social service entities and assisted living facilities may not be suitable for many autistics. For example, these activities often involve sports or games that may not be of interest or, more significantly, that they are not able to participate in (especially the many autistics who have poor motor skills and coordination). Other activities may simply be entirely outside their restricted range of interests. Although such activities can sometimes be successfully used to broaden an autistic person, there can also be strong aversion. In the latter case, the autistic is hardly well-served by such efforts despite their good intentions.

Activities that are more appropriate for autistics usually center around their specialized interests and, when present, areas of unusual abilities (i.e., splinter skills). Although these vary widely among individuals, it is often observed that significant numbers of autistics gravitate towards certain specific interests and, as such, group activities planned around these will attract at least a few (perhaps more) members of an autistic community. More generally, autistic interests largely tend to lie within a confined number of restricted categories. As such, many activities related to any of these categories, while not catering to the specific interests of some individual autistics, may nevertheless be acceptable to them, and thereby constitute suitable group activities for larger numbers of autistics. Finally, activities outside the range of an individual’s specific interests but to which there is no significant aversion can be used to broaden their horizons. This in turn can help with improved socialization into wider and more diverse communities.

Finally, activities outside the autistic community that involve extensive socializing, particularly those requiring higher levels of social skills, are generally not appropriate recreation for autistics, and should generally be avoided. At the very least, such activities need to be accompanied by appropriate interventions such as social skills training or coaching, or other forms of instruction or therapy. The result should always lead to greater acceptance by and involvement with the respective communities, and never to discouragement of the individual because such is not the result. In all the above cases, it is imperative that the individuals and organizations that organize recreational activities for autistics be completely aware of the needs of this population, and always take them into full consideration when planning activities.

Community Living

Regardless of their housing situation, autistics need an opportunity to become a part of the greater community in which they reside, or otherwise find an adequate community to which they can belong. The former situation is usually preferable and will often require appropriate assistance and support services to make it possible. In particular, the challenges faced by most autistics with social skills and socialization need to be addressed, perhaps extensively. Even something as basic as finding and being introduced into local communities can present challenges that require intervention; such services must be made readily available when needed. A more fundamental prerequisite, however, is that instruction and coaching and, where warranted, therapeutic interventions for social skills and socialization be provided at the earliest appropriate time. These skills are essential for an autistic to have any chance of being successfully integrated into any community, particularly a neurodiverse one.

As was the case for recreational activities, the specialized interests and unusual talents of many autistics can be a key to community involvement. If a substantial segment of the local community happens to share a particular interest, this can greatly help an autistic become part of that community. Otherwise, finding other communities of individuals dedicated to that interest can be of tremendous value. Also, an autistic who has splinter skills that can be used to either meet a practical need of the community (such as technical, information, or financial skills), or to help provide recreation (e.g., artistic talents) can use these to become an accepted and even valued member of that community.

Communities consisting entirely of autistics have been forming in recent years, particularly support and social groups. I have had the opportunity to attend, facilitate, and help to organize such groups with GRASP and Aspies for Social Success (AFSS), both of which are peer-run organizations (for and by individuals on the autism spectrum). Such groups provide communities where autistic challenges are understood and appreciated. For those who belong to other communities, these can provide an additional refuge where they can address issues that may not be understood, let alone appreciated, by their more mainstream communities. For others who, sadly, have not found communities to be a part of, they constitute perhaps their only opportunity to belong to one. Traditionally, these groups have met in person at a variety of venues (e.g., meeting rooms, diners) but, with the advent of the COVID-19 pandemic, the number and frequency of online meetings among these groups has greatly proliferated (some are held every week) over the past year. The result has been a dramatic flourishing of these virtual communities, not to mention a considerable mitigation of the isolation experienced by so many during the pandemic.

In all the above instances, the presumption that the skills required are so basic and instinctive that they do not need to be taught must be completely discarded when dealing with autistics, regardless of their perceived intelligence or whatever unusual talents they might have, however exceptional. This needs to be done if the fundamental needs of the autistic community, including the need for community, are to be met.

Karl Wittig, PE, is Advisory Board Chair for Aspies For Social Success (AFSS). Karl may be contacted at kwittig@earthlink.net.

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