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.