I am a single
mother to 3 boys with autism. I am very proud of them and their achievements as
they grow older. When my boys entered my life, autism became my life as well. Like
any other parent, I enjoy the time I have with them. However, I am also aware
my boys will not stay little forever and I may not be around when they get
older too. My boys have special needs and will always require assistance in
certain areas of their lives in order to make sense of the world they live in.
I have always asked myself, “What would happen to them when I am not around
anymore? Who would look after them? What kind of life would they lead?” I am
sure that many other parents of autistic children have asked the same question.
It is every parents’ worse nightmare to think that their child is in some kind
of institution somewhere locked away where they could possibly live alone and
miserable. No parent wants that.
Denise D. Resnik, author of There Is
an Autism Epidemic, wrote, “A diagnosis of autism is being made every 20
minutes. The dramatic increase in incidence, from one in 10,000 in the early
1990s to one in 88 today” (Resnik par). Autism will affect everyone, one way or
another, in the United States. Whether you have a child with autism, or a
family member has a child with autism or you know someone with autistic
children, it will in some way affect you. Even if you do not have a child with
autism, it can affect you because the problem is growing and if we do not respond
to the epidemic of Austim, the United
States will end up with more poverty, and homelessness. Our current social welfare programs will be
overwhelmed as they are unequipped to cope with the rising number of autistic
adults.
Because I have children with autism
and I want to find answers for them now rather than later, I have poured over
books, looked up answers online and joined support groups for parents of autistic
children. I wanted to find viable solutions that not only have long term effects,
but will bring to autistic adults a quality of life that allows them to fill
the measure of their happiness and make them contributors to society rather than
another hopeless charity case. What I have found is that even with autistic
adult’s abilities to do jobs and take care of themselves, they still do require
assistance. What assistance they need may vary between individuals. In order
for the United States to survive this epidemic, we must face the issue, address
it with programs specific to autistic adults needs to help them into satisfying
careers, and provide ongoing support.
I know that some people would oppose
to programs for autistic adults for various reasons. One is that there are some
people who believe that there is no such thing as an autism epidemic. Or they
believe that certain people are just capitalizing on autism to create new
“wealth” for programs and service providers that gear towards people with autism.
Paul Sperry, author of The Autism-Welfare Nexus, concedes that far too many
cases are being classified as autism because of a change made in 1994 under the
Clinton administration enlarged the definition of autism to include children
who were previously thought of as “odd” (Sperry). Sperry states:
A growing body of scientific research has found that
the rise in autism diagnoses is not due to a true increase in the increase in
the incidence of the cognitive disorder, but rather to a widening of the
definition and increased screening by schools and doctors, who are rushing to
diagnose and medicate socially awkward or difficult kids. (Sperry par 3)
There’s no doubt that misdiagnosis do happen,
but as a society, we are still learning about autism and what causes it. Not
long ago, people did not know autism even existed. Temple Grandin PhD, a
leading expert on autism, is autistic herself and wrote in many of her books of
when her mother took her to a psychiatrist, Temple’s mother was told the reason
for her autism was because sometime during the first year of Temple’s life the
mother became aloof or cold towards the baby (Grandin, The Way). That was back
in the early 1960s. We have come a long way since learning about what really
causes autism and what the symptoms are and why it varies from child to
child. The expansion of the autism disorder
was to reach out to all autistic children to ensure they got the help they
needed before it would be too late because the sooner we are able to identify a
child with autism, the better chances the help we give will ensure that child’s
success in adulthood.
Whether
anyone wants to face the issue at hand or not, the problem is growing with or
without our help. If we do not do
anything about the growing number of autistic adults, we will see our welfare
system overwhelmed. According to Autism Insights research paper, The Challenge
and Promise of Autism Spectrum Disorders in Adulthood and Aging, autistic
adults often do not have support they need to transition them from high school
to careers and are often underemployed and living in poverty (Autism par 3).
Once an autistic adult leaves high school, the amount of support they
previously received drops dramatically leaving the autistic person feeling
disoriented and tempted to recluse.
It
is very important for autistic adults to have jobs. Temple Grandin wrote in her
book, Developing Talents: Careers for Individuals with Asperger Syndrome and
High-Functioning Autism, “Work is more than just a livelihood or paycheck; it
is the key to a satisfying and productive life. For many on the autism
spectrum, it is the glue that keeps our lives together in an otherwise
frustrating and sometimes confusing world” (Grandin, Develping pg5). Even for a
normal person, having a job is a means to satisfaction in life. Having a job
helps autistic adults have a purpose for their lives, to get out of their homes
and interact with the world. It is a way for them to have a schedule so that
they remember to take care of themselves and have a quality of life. Or as
Grandin would put in in many of her speeches, “It is a way to stretch
themselves in order to improve.” It is a
far better plan than to institutionalize them in “human warehouses” or just
depend on social welfare to take care of them.
Right
now, what we currently have is Individuals with Disabilities Education Act (IDEA)
which is an act that was signed into law in 2004(IDEA). As part of the No Child
Left Behind Act, IDEA was to ensure that children of autism would be granted
education and the government would pay the tuition. IDEA also requires
institution of higher learning to assist autistic adults in job placement
(IDEA). The only problem with this is that, it serves autistic adults up to the
age of 21(IDEA). After that, there are no programs available. After the age of
21, it is then expected that autistic adults simply take care of themselves as
any other adults. It is by this time, if
the autistic adult is to succeed, they would have to have everything in place
and have a stable, routine schedule they can live by. In an ideal world, that
would work every single time. This isn’t an ideal world, and we need a better
plan for autistic adults to ensure self-sufficiency.
In
the documentary film by ABC News, A Place in the World: Adults with Autism
Finding Their Way, one courageous mother of an autistic adult took it upon
herself to provide a program in her hometown where they assist autistic adults
in getting jobs and having fulfilling adult lives. This mother worried, as I
mentioned, about ensuring quality of life for autistic adults as opposed to
“warehousing” them in institutions. She is able to get funding now for the
program that has become vital for a number of autistic adults in her community.
However, that does not alleviate her fears that a day could come if the funding
is cut for the program she runs and if there will be no one there to run the
program should anything happen to her. One problem that many programs like this
face is those who oppose to giving badly needed funds, claiming that it is a
waste of taxpayer money. I do not believe it is a waste if it helps adults to
find and keep jobs and give assistance where it is needed to ensure they live
as self-sufficiently as possible. The alternative would be to let them live off
of welfare, collect food stamps, larger social security disability checks, pay
to have them live in an institution or, worse, live on the streets where they
could be largely ignored.
Plenty
of support is being given to autistic children and adults up to the age of 21.
There’s programs and support available to be given to help autistic children
transition between childhood to adolescent years and into college. What we need
is support for autistic adults to transition them into careers and, if
necessary, provide ongoing support. For some severely autistic adults it may be
a good idea to be in group homes where they may receive constant supervision
but yet maintain some sort of independence. Yet, for some lightly autistic
adults, all they may need help with are the interviews to get jobs.
There
are many programs available that help people in general to get jobs and find
suitable housing and what have you. The problem comes when it is hit and miss.
There are not a lot of research papers or documentation out there about the
issue with autistic adults and how we can help them to be self-sufficient as
much as possible. Why is this? We give assistance to people who are blind
throughout their lives. We give them tools to help them do their jobs all the
time. They receive computers specific to their needs, books in braille to read,
and even have someone give them rides to work, errands or wherever they need to
go. We also give help to those with other handicaps throughout their lives; be
it wheelchairs, hearing aids or what have you. Autistic adult is no different.
They have needs to assist them throughout their lives and we can do so while
maintaining their independence. It would be far better that the government
provides help to autistic adults just like they do for the blind, the deaf, and
other disabled adults. I would propose that the same organizations that assist
other disabled adults be trained to assist autistic adults. That way with the
trained social workers, they can assess the needs to each individual and
process accordingly. Otherwise, if we don’t get government assistance for
autistic adults, we will be left to private individuals to help these autistic
adults. While I am not against private organizations or individuals helping
autistic adults, I am also aware that not everyone has an immediate need to
services for autistic adults and is, therefore, not interested in helping
autistic adults. As the mother I mentioned, she too worries because not
everyone is aware of he needs of autistic adults and fears for the day her
funding is cut or if there’s no one to take over after she leaves.
Works
Cited
ABC News. A Place in the World: Adults with Autism
Finding Their Way. Films on Demand. Films Media Group, 2005. Web. 9 July
2015.
Autism Insights.
Scott D. Wright, Denise E. Brooks, Valerie D’Astous and Temple Grandin. The challenge and promise of Autism spectrum
Disorders in Adulthood and Aging: A systematic Review of the Literature (1990
to 2013). Libertas Academica 2013. Web. 16 July 2015.
Grandin, Temple. Developing Talents: Careers for Individuals
with Asperger Syndrome and High-Functioning Autism. Shawnee Mission, KS.
Autisms Asperger Publishing Co. 2008
Grandin, Temple. The Way I See It. Arlington, Tex.:
Future Horizons, 2011.
Resnik, Denise D.
“There Is an Autism Epidemic.” Autism. Ed.
Lauri S Scherer. Farmington Hills, MI: Greenhaven Press, 2014. 65-71.
Introducing Issues with Opposing Viewpoints. Gale Virtual Reference Library. Web. 9 July 2015
Sperry, Paul. “The
Autism-Welfare Nexus.” Autism. Ed.
Lauri S. Scherer. Farmington Hill, MI: Greenhaven Press, 2014. 65-71.
Introducing Issues with Opposing Viewpoints. Gale Virtual Reference Library.
Web. 9 July 2015.
U.S. Department of
Education. Individuals with Disabilities
Education Act. 2004. Web 16 July 2015.
Works Consulted
Sicile-Kira,
Chantal, Adolescents on the Autism
Spectrum. New York; The Berkley Publishing Group, 2006.
