[Congressional Record Volume 150, Number 62 (Thursday, May 6, 2004)]
[Extensions of Remarks]
[Pages E783-E784]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




      RECOGNIZING THE IMPORTANCE OF INCREASING AWARENESS OF AUTISM

                                 ______
                                 

                               speech of

                        HON. SHEILA JACKSON-LEE

                                of texas

                    in the house of representatives

                         Wednesday, May 5, 2004

  Ms. JACKSON-LEE of Texas. Mr. Speaker, I rise in strong support of 
this resolution that will raise awareness of autism, one of the most 
mysterious, and challenging mental conditions that affects the American 
people. Autism affects 1 in 166 children today, and is thus the third 
most common developmental disability. Autism comes in a wide spectrum 
of intensities, ranging from mild personality quirks, to profound 
communication difficulties, to self-destructive behaviors, to utter 
dependence on care-givers.
  This nation spends $90 million per year caring for people with 
autism. The Centers for Disease Control and Prevention have estimated 
that as many as 1.5 million Americans have some form of autism, and the 
prevalence is skyrocketing. Based on statistics from the U.S. 
Department of Education and other government agencies, autism is 
growing at a rate of 10-17 percent per year. At these rates, the 
prevalence of autism in our country alone could reach 4 million in the 
next decade.
  The cost of specialized treatment in a developmental center for 
people with autism is approximately $80,000 per individual per year. 
The cost of special education programs for school-aged children with 
autism is often more than $30,000 per individual per year. But the 
greatest burden of caring for the autistic falls on families of those 
with autism.
  It is hard to even imagine what it would be like to be autistic or to 
care for an autistic family member. To give a bit of insight, I would 
like to share a personal story of one of my staff members, who has a 
26-year-old autistic daughter named ``Amy.'' Despite the fact that Amy 
is an adult, she is not able to use language to communicate her needs. 
She cannot communicate even simple messages such as that she has a 
stomach ache or that her room is too cold, and she gets extremely upset 
when she needs to communicate and is not able to do it.
  This staffer shared a story that he said would probably sound 
familiar to any person who has lived with autistic individuals. Amy 
woke my staffer and his wife in the middle of the night one night with 
screams of rage and frustration. When they rushed into her bedroom, she 
took them to her bedroom window

[[Page E784]]

and made frantic noises. They stood by helplessly for a long time, 
watching her distress, until they thought to look down at the deck 
below Amy's window. The floor mat on the deck had blown out of place. 
My staffer went out to the deck with a hammer and nails and nailed the 
mat to the floor of the deck so that it would stay where it was 
supposed to be. As he hammered the nails, he could hear Amy's happy 
laughter.
  When he got back to bed, Amy was quiet. Her world was in order again.
  It takes years to learn the needs of a child like Amy and how to care 
for her. Parents and siblings of those with autism, and teachers and 
social workers, do heroic work every day just to help the autistic lead 
more comfortable, though not normal, lives. They deserve our 
recognition and they deserve our support.
  We need to recognize the importance of helping Amy and the many other 
autistic individuals in our country. We have to support programs for 
increased research and improved training and support to make their 
lives better. In the past, we have made bold statements, pledging 
federal support for the autistic, but we have not fulfilled those 
pledges.
  For example, the Individuals with Disabilities Act (IDEA) of 1990 
ensures a free and appropriate public education to children with 
diagnosed learning deficits. The 1991 version of the law extends these 
services to developmentally delayed preschoolers. IDEA calls for 40% of 
the funding for educating special education students to be provided by 
the federal government. To date, Congress appropriates less than 20 
percent, or less than one half that was promised.
  It is time to fulfill our promise to the autistic, their families, 
and our schools. I strongly support this resolution that will help 
raise awareness of autism, and encourage this Congress and this nation 
to help take care of those who need us.

                          ____________________