On Independence


Full version, written for S.I. focus magazine in June 2010.


First, families of individuals with autism should remember that leaving home does not constitute the only option that exists for these individuals as they enter adulthood. There are many choices out there for independent living for people with autism, and contrary to what some people might believe, "leaving home" is not always necessary for independence.
Concepts of what is essential for independence vary from culture to culture. Psychologist Robert Havighurst spent much of his life researching the different tasks that societies expected people to master and develop in different stages of life, which he called "developmental tasks," and concluded that each culture expects individuals to be able to develop certain tasks as certain times in their lives. Most of us assume that independence involves finding a job and getting one's own place. In other places, such as my suburban community, going to college is viewed as mandatory for independence, and it is expected that all high school graduates will attend college.
In reality, independence does not necessarily have to be gained by leaving home and by going to college, contrary to what many people in American culture believe. You could do neither yet still live an independent life. There are jobs that exist for people without even a high school diploma, and there are successful and unsuccessful people at all levels of education.
Not all people who dropped out of high school are unsuccessful in their lives, and not all people who obtain doctoral degrees are successful. Autism specialist Dr. Brenda Smith Myles uses an example in her presentation to describe this educational mismatch: "I know a young man with autism who has a doctorate in biology but to this day, his only job is shelving books at the local library."
In addition, it is also possible for people to stay and live at home yet still live independent lives. One could find, keep a job, maintain a social life, and make money yet still remain at home with their parents. For this to work, parents would have to decide that after their child reaches a certain age or maintains a job, they are allowed to have more independence regarding making their own decisions. Then, when their parents passed, they could inherit their parent's house and live there until their own death, or move out after their parent's died.
My great-aunt never left home--she lived with her mother until her death, and then inherited their house when her mother died. During her 88 years of life, my great-aunt raised a family, was a successful teacher and professional floral arranger, and was the proud wife of a successful dentist until his death. Her daughter, in turn, did not leave home and continued to live in her grandmother's house. She may never have left home, but she still is living an independent, successful life.
Other options also exist as well. Although many people cringe at the idea of individuals living in a group home or a residential community, not all such living situations are bad places, and some people might need such assistance in their lives. Just as we have retirement communities and assisted living situations for elderly people, such communities also exist for individuals with disabilities as well. And not all of them are lock-up institutions. And sometimes, living in a group home is something that could benefit a person with autism.
Intentional communities and cohousing might be an option as well. These are communities that are not related to autism or other disabilities, but consist of people who come together because they share other values that may deviate from modern society's values. People with autism, when they become adults, often form values, morals, and beliefs that are different and are not always accepted by our culture. Examples of such communities are ecovillages, where people come together to live a more environmentally friendly lifestyle and to share resources, cohousing arrangements near universities where students and others live communally to save money, as well as anarchists who want to get away from society and live primitively in the wilderness.
Preparation for life skills is something that should be done with the input of the adult with autism, and based on the specific living situation that person. It should also be done with certain steps at a time. However, it cannot be done independently or abstractly, and must be taught as specific as possible to the skill, as people with autism are often unable to generalize what they learn.
Autism specialist Dr. Peter Gerhardt, in a presentation at the 2010 Center for Autism and Related Disabilities conference in Orlando, Florida, stated: "If I want to teach an autistic person how to behave at a Burger King, I should take them to a Burger King. And if I want to teach an autistic person how to ride public transportation, I have to go on the bus or train with them to learn it."
Life skills should also be taught based on knowing what an autistic person knows and evaluating skills first, and then instructing them from there. Time should not be wasted on nonessential life skills, and skills that they already know. To quote Jen Blackwell, the parent of two autistic boys, "Pick your battles. Think about what's worth fighting your kid for and what's not worth fighting for, and prioritize from there."
In addition, another life skill that can be taught is awareness of one's limitations. If an autistic person has difficulty with a certain skill, e.g. driving a car, you can help your child find a living situation where driving a car is not necessary. As comedian Dave Barry once said, "We guys have a reputation for being unable to understand household chores, but that's because when we live on our own, we create living situations where we don't have to perform them."
In order to foster my own independence, my mother started giving me specific tasks that she knew I could succeed at, based on things she knew I was interested in. Because of my passion for geography and directions, she would ask me, at age five, to find a particular item in the supermarket on my own, then return it to her. Of course, she got a good lesson in autism awareness when she told me, "If you get lost, go to the service desk." Because I did not hear or understand little words such as "if," I thought that she was actually asking me to rehearse the procedure for what to do when getting lost. Therefore, at first, I went directly to the service desk, announced that I was lost, and had my mother paged. Was I surprised when she greeted me with an angry scowl rather than the brilliant smile I expected for a mission accomplished. It took her a while to realize her own error.
Years later, when I was about thirteen and very interested in trains, my mother allowed me to board a commuter train, ride down to Chicago's Union Station, eat a meal in the station, and return. Again, she couldn't predict how I would react to the unexpected. The first time I went down there, a beggar approached me, saying that he needed seven dollars to get to his sick daughter in South Bend. Not only did I give him all my money, but I suggested the fastest and most efficient way of getting to South Bend. My mother laughed at that one, while scolding me for being taken in by the man's story.
Little by little, my independent trips became longer and more complex, particularly when I was asked to speak somewhere and my mother (who was caring for my much younger sister and my disabled grandmother when I was fifteen) could not come with me. On these trips, she would see me safely on the bus or the train, then I would call her on every leg of the journey. When I arrived at my destination, I would call her again. She usually had called the host of my trip, usually other parents, explaining in detail what to expect and what could go wrong. She called them "in loco parentis," which got shortened to the "loco parents" of other autistic children. To this day, unexpected things happen, particularly because my autistic body language sometimes makes people think I am a terrorist or up to something, but as I reassure my mother, I have always come back.
If independent travel is out of the question, perhaps a trip to the corner store to buy something, with a phone call home to let Mom know the autistic person arrived safely, or is that is too dangerous, try a trip to the corner while Mom watches, or around the block. Although you have been probably making all the decisions for your autistic child because you feel that he can't make his own decisions or "he has no sense of danger," or "he lacks common sense," the only way he is going to develop common sense is if you put him in a situation where he has to decide something for himself.
In the end, independent living should not be measured solely on one's ability to hold a job and live independently, but by a person's ability to live a happy, fulfilling life based on their unique abilities, likes and dislikes, and their quality of life.


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