Considering an Appropriate Lifestyle for Adults on the Autism Spectrum
by Bill Moss
Executive Director, Linwood Center, Inc.
Many of us are becoming increasingly attentive to the growing number of people on the Autism Spectrum who are now adults and looking for a place to live. No longer a condition associated only with childhood, (remember Leo Kanner’s Early Infantile Autism?) Autism Spectrum Disorder crosses all demographics, including age. Once eliciting only concerns related to childhood, autism brings to the forefront concerns that permeate the entire lifespan. A few short decades ago, residential options as it pertained to those affected by autism were concerns only for the very few. Today, those many families who are living with or caring for an adult or soon-to-be adult on the Autism Spectrum are acutely concerned about residential options for their loved ones.
A natural progression occurs in families as children begin to grow up. When children who are not on the Spectrum become teens and then young adults, the relationship between them and their parents evolve. More often than not, they go off to college or get a job; they find a roommate or get married and eventually establish a life independent of their parents. Of course many families do not conform to this course of events. We all know of children who, for one reason or another, remain dependent on their parents well into adulthood, especially in this day and age. Families make choices based on economic factors, emotional factors and logistical factors. Sometimes families discuss these issues; they weigh the pros and cons, they explore options and they arrive at a decision. Often times, long range plans are established; adult children may continue to live with their parents as a stop-gap measure, perhaps until they finish school, obtain a job, or save enough money to purchase a home. Sometimes families just find themselves in situations where, for unexpected reasons, adult children move back home, perhaps even for extended periods of time.
Families affected by autism will be the first to tell you that they also experience a natural progression, but the challenges they face are multiplied considerably by the circumstances associated with their adult child’s autism. More often than not, the adult living with autism will have a more difficult time navigating the many systems and overcoming the many barriers standing in the way of making a choice regarding where to live. Should he continue to live with his parents? Should he find a place with a friend or a partner? Should she live in an apartment or a house? Should she arrange for live-in support or drop-in support? Should he live in a group home? Should he live in a farm or communal setting? Does she have enough money to pay the rent and, if not, can she negotiate financial support through local, state and federal agencies?
What can and should a parent do to support their adult child on the Autism Spectrum? How does one even begin to answer these important questions? Every individual living with autism has his or her own unique set of interests, needs, desires and behaviors, all of which may present challenges for the individual as he or she navigates through and around barriers to secure a residential placement. These factors will define the supports that the individual needs and the availability and quality of these supports can make or break a good community-based residential program.
The Maryland Developmental Disabilities Administration licenses all community based residential services in the State of Maryland. This administration decrees that individuals with developmental disabilities and their families enjoy full participation in all aspects of community life. Furthermore, it is critically important to empower individuals to access quality supports and services, the end result being to foster personal growth, independence and productivity. To that end, it is up to the individuals and, as is often the case, the families of individuals on the Spectrum to look for certain attributes as they consider residential options. These attributes are no different than those that any of us should be looking for.
In 1969, Bengt Nirje, who was an ombudsman for the Swedish Association for Retarded Children, developed the classic “Normalization Principle,” where he suggested a broad spectrum of ideas and experiences that, when put into practice, are relevant for all people, of all ages, across all abilities and disabilities. These concepts are especially relevant today for individuals on the Autism Spectrum. Nirje (1994) suggested a lifestyle that has implications for people with disabilities as well as their caregivers, putting them in touch with everyday realities. This lifestyle should include rhythms of daily living and developmental experiences that are typical for all of us, having one’s choices respected, relationships with both sexes, economic parity and having residential options that are similar to those of anyone else. These guiding principles as they relate to individuals on the Autism Spectrum are summarized below.
Rhythm of the Day
There is no reason that the events in the day of an individual on the Spectrum should be any different than that of any other person. Typically, we get out of bed in the morning, we greet the significant others in our life, we exercise, wash up, brush our teeth, get dressed, make the bed, have a cup of coffee, eat breakfast, and then leave the house for school or work. We may read the morning paper, check our email, exchange pleasantries with others or engage in conversation before we leave the house. As we go through these motions, we anticipate the events of day. When we return home later in the afternoon or evening, we think back on our experiences through the day. Then of course there is down time; some of us may take a nap, watch TV, or read a book. Some of us may go to the gym, run on a treadmill, or jog through the neighborhood. In the evening, we sit down to dinner, engage in whatever social or leisure activities we choose, and prepare for bed.
Our day is not an endless and monotonous 24 hours. We eat at regular times, at a table and when we are hungry. We do not eat early in the afternoon for the convenience of other people (keeping staff on schedule). If your loved one on the Spectrum or the person for whom you are advocating is not able to ensure that his or her home life includes some semblance of this daily rhythm, it is up to you to advocate for this.
Rhythm of the Week
Home should be a place that is comfortable, where the people with whom we live are friendly and treat each other with dignity and respect. Home should be a haven where we can relax in the evening and on the weekends and engage in the activities we choose. We would not tolerate a hostile or controlling environment for ourselves where we are told what to do and where to do it, and we should not tolerate this for the individuals whom we support. Encouragement and guidance are vastly different than control and coercion.
As we think about our rhythm of the week, we find ourselves living in one place, going to work in another place and participating in leisure activities in yet another place. Those of us with jobs or school on weekdays anticipate leisure activities on weekends and we generally look forward to getting back to work or school on Monday. There is no reason why people on the Spectrum should not also experience these same rhythms.
Rhythm of the Year
Extending this concept, many of us are able to take a vacation to break routines of the year and we often find that seasonal changes bring with them a variety of types of food, work, cultural events, sports, and leisure activities. Many of us thrive on these seasonal changes that provide us with much needed relief. Our rhythm of the year includes celebrating birthdays and anniversaries, going on holidays, and, in some cases, taking a vacation abroad.
Developmental Experiences of the Life Cycle
It is important to pay particular attention to what makes sense for the person developmentally and how his or her residential experience will fulfill his or her needs. In adolescence one is generally interested in grooming and hairstyles, music, dancing, boyfriends and girlfriends. In adulthood, life is filled with work and responsibilities. In senior years, one has memories to look back on and enjoy the wisdom of experience. This should be no different for an individual on the Autism Spectrum.
Respecting One’s Choices, Wishes, and Desires
Living in a community-based residential setting means having a range of choices, wishes, and desires respected and considered. Adults generally have the freedom to decide where they would like to live, with whom they would like to live, what kind of job they would like to have, whether they would prefer to go out at night or on the weekends with others or just stay home and watch television. Living in a community-based residential setting also means living in a world comprised of two sexes. Children and adults both develop relationships with members of the opposite sex. Teenagers become interested in having boyfriends and girlfriends and adults may fall in love and decide to live with someone or get married.
Individuals on the Autism Spectrum have the right to basic financial privileges as well as the responsibility to face financial obligations. They should be able to draw the same benefits as anyone else, enjoy the same minimum wage laws, child allowances, and old age pensions. They should have money and be able to spend it as they please. They should also pay their share of taxes when appropriate and contribute to their own care and support. This is not to say that they don’t need guidance; they should absolutely have their choices and desires considered and respected and be able to make their own decisions to the extent possible.
Choosing a house in a residential neighborhood should certainly be an option for those who choose this type of housing and who can afford it. Just because an individual is living with autism does not mean that individual must live in a large facility with 20, 50, or 100 other people and it certainly does not mean that individual should live isolated from the rest of the community. Typical locations and typical size homes give residents better opportunities for successful integration within their communities. Of course, there are other options, other residential models from which to choose. An individual on the Spectrum may be better suited for a lifestyle away from the hustle and bustle. He may wish to live on a farm or in a home that is not in a typical urban or suburban neighborhood. The point is, the individual should have options and his choice must be considered and respected.
This article presented a number of ideas that should be considered when establishing a lifestyle and choosing residential options for an individual on the Autism Spectrum. As these ideas are considered, one must not lose sight of whether the support the individual will require is congruent with the lifestyle and the demands that will be placed on that individual once the residential choice is made. Life-altering decisions should always be made after considering the extent that it is possible to develop an appropriate and meaningful program plan for the individual. Gary Mesibov (1990) argues that many practitioners have not responded to the implications of developing program plans only to the extent possible, resulting in people with disabilities and their families not always receiving services that are in their best interest. Just because an individual living with autism is included in settings that are considered by most to be “appropriate,” without careful planning and support, and without taking into consideration the individual’s desires and abilities, this endeavor could be counterproductive for the individual and frustrating for the family and the people supporting the individual. When all is said and done, the goal of a good community-based residential program is to increase the individual’s independence to the extent possible, and to improve the individual’s quality of life while respecting his or her choices.
Mesibov, G.B. 1990. “Normalization and its relevance today.” Journal of Autism and
Developmental Disorders, Vol. 20: 379-390.
Nirje, Bengt. 1994. “The normalization principle and its human management implications.” SRV-VRS:
The International Social Role Valorization Journal, Vol. 1(2): 19-23.