President Obama,
Congratulations on your reelection! I was one of the millions who
voted for you, and as the mother of a teenage boy with autism, I am
grateful that you did so much in your first term to help families coping
with autism. When you signed the Combating Autism Act legislation on
September 30, 2011, which assured continued federal support for autism
research, services and treatment for another three years, many parents
of children with autism cheered. Declaring World Autism Awareness Day on
April 2 was another important step.
People with autism and their families look forward to the hope and
change that you spoke of in your acceptance speech today. Here are a few
facts about us that I hope you will keep in mind during the next four
years:
1. We are a fast-growing constituency. According to statistics released by the Centers for Disease Control
in March 2012, 1 in 88 children in the U.S. has an autism spectrum
disorder. This is a 23 percent increase from the CDC's 2009 report. More
children will be diagnosed with autism this year than with cancer, diabetes and AIDS combined.
2. We don't have much cash. Autism takes a toll on
families, both emotionally and financially. Many parents of children
with autism divorce, and even when the parents stay together, autism
drains families financially. A recent study by the Center for Autism Research at the Children's Hospital of Philadelphia, published in the journal Pediatrics,
reported that mothers of children with autism earned, on average, less
than $21,000 a year. This was 56 percent less than mothers whose kids
did not have health issues. The study also found that mothers of
children with autism work seven hours less per week on average than
mothers whose children did not have health problems. Income of families
with children with autism spectrum disorders are 28 percent less than
those of families whose children did not have autism. Where does all the
money go? Even though some treatments for autism may be covered by our
health insurance, many are not. And there are many other costs. People
with autism (both children and adults) who are non-verbal or who have
limited verbal skills can never be left home alone (what if, God forbid,
they have to call the fire department or deal with some other
emergency?) and all those hours of babysitting add up pretty quickly.
3. We don't have much patience. Starting early is
important in treating autism, so we are often in a rush. When my son was
diagnosed with Pervasive Developmental Disorder/Not Otherwise Specified
(PDD/NOS), a mild form of autism, at age 3, I learned to my horror that
he was already too old for early intervention programs. One critical
way in which the government can help us is that it can minimize the red
tape associated with getting young children into the special needs
system. Just as you stood with Gov. Christie in New Jersey and pledged
that the federal government would do its best to cut down on any
paperwork that stood between people displaced by Hurricane Sandy and the
services they need, the government can do the same when helping
children with autism. While many of the funds for special needs children
come from state and local governments, there are federal monies
available for some schools and services. If you lead the way, officials
at every level will ease our path to getting our children the help that
they. You can also help allocate more money to fund research into the
causes of autism and new treatments.
4. We are a diverse group. People of all races, ethnic groups and religions are affected by autism. The CDC reported last March that the greatest increases
in diagnosis of autism in recent years were among Hispanic children
(110 percent) and black children (91 percent). Scientists suspect that
some of this increase is due to greater awareness and better diagnosis
among these groups. Whatever the reason, the fact is that Americans from
all backgrounds are grappling with this issue more than ever. I have
written a novel about families of children with autism, If I Could Tell You, and I receive letters and email about it from readers who come from all over America.
5. We're in it for the long haul. In the vast
majority of cases, people do not "recover" from autism. It's a lifelong
condition. That said, high-functioning people with autism can often lead
totally independent lives, while many others are able to achieve a
degree of independence and fulfillment with just a little bit of extra
help. Some need a great deal of extra help. But for all our children,
the key to a better life is being as much a part of their community as
possible. The good news, for you and for us, is that the more
independent our children become, the less the government will have to
pay to support them over the course of their lifetimes.
So best of luck to you and your family as you go forward, and please keep us in your thoughts.
Best,
Hannah Brown
(aka Danny's mother)
Sumber: http://www.huffingtonpost.com/
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