Opening Statement
Chairman Dan BurtonGovernment Reform Committee
U.S. House of Representatives
“Autism: Present Challenges, Future Needs -
Why the Increased Rates?”
Thursday , April 6, 2000
2154 Rayburn House Office Building
Washington, D.C. 20515
This morning we’re here to talk about autism. As we learned in our August hearing, the rates of autism have escalated dramatically. What used to be considered a rare disorder has become a near-epidemic. We’ve received hundreds of letters from parents across the country. They’ve shared with us their pain and their challenges. My staff tells me they cried from the heart-break of many of these letters.
I don’t have to read a letter to experience the heartbreak. I see it in my own family. {Slide 1} My grandson Christian was born healthy. He was beautiful and tall. We were already planning his NBA career. He was outgoing and talkative. He enjoyed company and going places. Then, his mother took him for his routine immunizations and all of that changed. He was given what so many children were given – DTaP, OPV, Haemophilus, Hepatitis B, and MMR – all at one office visit. That night Christian had a slight fever and he slept for long periods of time. When he was awake he would scream a horrible high-pitched scream. He would scream for hours. He began dragging his head on the furniture and banging it repeatedly. Over the week-and-a-half after the vaccinations, Christian would stare into space and act like he was deaf. He would hit himself and others, which was something he had never done. He would shake his head from side to side as fast as he could. He lost all language.
Unfortunately, what happened to Christian is not a rare isolated event. Shelly Reynolds will testify today. Her organization, Unlocking Autism, will be displaying thousands of pictures of autistic children at the “Hear the Silence” Autism Rally this Saturday. Forty-seven percent of the parents who provided these pictures, felt that their child’s autism was linked to immunizations.
We frequently hear about children with chronic ear infections and children who became autistic after spiking a fever with their vaccinations.
Liz Burt was one of the hundreds of parents who contacted us. Her five-year-old son, Matthew, has been classified autistic. He was developing normally. At age 15 months, following his MMR vaccine, he began to regress. Since the time of his vaccination, he’s had chronic diarrhea. {Slide 2} This is very prevalent in autistic children. He also didn’t sleep on a regular basis for over three years. Liz took her son to numerous gastroenterologists in prominent medical facilities in the United States. with no resolution. Finally, this past November, Liz took her son to London, to the Royal Free Hospital. A team of medical experts there examined Matthew. They felt that he had a bowel obstruction. To the family, this seemed impossible since he had constant diarrhea. An x-ray indicated that Matthew had a fecal mass in his colon the size of a small cantaloupe. After the obstruction was cleared with laxatives, Matthew underwent an endoscopy and colonoscopy. The lesions in Matthew’s bowel tested positive for the measles virus.
Dr. Andrew Wakefield and Professor John O’Leary will be testifying today. Their research has uncovered a possible connection between inflammatory bowel disorder in children with autism who received the MMR vaccine and have the measles virus in their small intestines.
Since coming home from England and being treated for chronic Inflammatory Bowel Disorder, Matthew has finally begun to sleep through the night. I know it’s a welcome relief for his family. Unfortunately Matthew’s story is not that unusual in children with autism.
It’s important that I make two things very clear today. I am not against vaccinations, and I don’t think that every autistic child acquires autism after receiving childhood immunizations. {Slide 3} However, there is enough evidence emerging of some kind of a connection for some children that we can’t close our eyes to it. We have to learn more.
Dr. Mary Megson of Richmond, Virginia will testify about the correlation she has seen in children with Autism and Attention Deficient Disorder. She’s seen a correlation between Vitamin A depletion and immune-suppression after receiving the MMR vaccine.
There are certainly children who are born with autism. They have what can be called classical autism. There are however, a growing number of children who develop normally and then acquire autism or atypical autism.
There most probably is a genetic component to autism. But genetics is not the only issue. Many children seem to have severe food sensitivities – particularly to gluten and casien – ingredients in the most common foods – dairy and wheat. Many of these children show signs of autism shortly after receiving their immunizations. Some of these children, as we will hear from Jeana Smith, have metal toxicities - aluminum and mercury. What is the source of these toxic substances?
As Dr. Goldberg will testify, maybe what we are seeing is not autism at all, but a neuro-immunologic dysfunction.
I’m very concerned about the increased number of childhood vaccines. I’m concerned about the ingredients that are put in these vaccines. I’m concerned about the way they’re given. We’ve learned that most of the vaccines our children are given contain mercury, aluminum and formaldehyde. Last year the Food and Drug Administration added up the amount of mercury our babies were being given to learn that in the first six months of life they received more mercury than is considered safe. Why is it that the FDA licenses vaccines that contain neurotoxins like mercury and aluminum?
When asked about the increased rates in autism, many will immediately discount that there even is an increase. Even though the latest statistics from the Department of Education show increased rates in every state. {Slide 4} Others will say the increase is due to better diagnostic skills. Others will say it is because the diagnostic category was expanded.
{Slide 5} California has reported a 273% increase in children with autism since 1988. {Slide 6}As for this increase, twenty-one percent of all autistic children in California live in the 29th district.
Florida has reported a 571% increase in autism {slide 7}. Maryland has reported a 513 % increase between 1993 and 1998. {Slide 8} You can’t attribute all of that to better diagnostic skills.
{Slide 9} In 1999, there are 2,462 children ages 3 to 21 in Indiana diagnosed with autism. {Slide 10} That is one-fourth of one percent of all the school children in Indiana or 1 in 400. Twenty-three percent of these children live in the 6th district. {Slide 11} This increase is not just better counting.
If we want to find a cure, we must first look to the cause. We must do this now before our health and education systems are bankrupted, and before more of our nations’ children are locked inside themselves with this disease.
Kenneth Curtis, part of Dave’s Morning Show at Oldies 100 FM here in Washington, will set the stage by talking about being the parent of an autistic child. He will be followed by James Smythe of Carmel, Indiana. He will share how, through properly looking at autism as an illness, and addressing that illness, his son is improving.
Scott Bono from North Carolina lives close to one of the finest medical facilities in the world – Duke University. However, he has been unable to find medical experts who properly address his autistic son’s needs. He is forced to drive 12 hours every four weeks for his son’s medical treatments.
Dr. William Danker, the father of a 13 –year-old daughter with autism, and a scientist, will testify about the challenges of finding therapies and treatments that have adequate research. He will also talk about the battles of getting adequate education through the public school system.
We hear repeatedly that parents are not informed at the time of diagnosis by their school system what educational options an autistic child is entitled to. It is only after hiring lawyers and going through the legal process that many children have access to appropriate educational opportunities.
We’re learning that the earlier autism is diagnosed and treatments are begun, the better it is for the child. Indiana is fortunate to have the First Steps Early Intervention System – a nationally recognized system that provides early intervention services for children up to two years of age.
Families are forced to spend huge sums of money out-of-pocket – even when they have good insurance, because autism is often specifically excluded. California passed legislation recently to require insurance companies to cover autism. Parents spend 20 and 30 thousand dollars a year. What medical care is covered is often done so after extensive struggles with insurance providers.
We have a long hearing scheduled today with a broad spectrum of ideas presented. We will have a variety of medical approaches presented. We will hear about Secretin, which gained a great deal of media attention in the past year, and from which many parents have seen tremendous success.
Dr. John Upledger, a former advisor to the Office of Alternative Medicine at the National Institutes of Health, will testify on the use of cranial sacral therapy. He is the Director of the Upledger Institute in Palm Beach Gardens, Florida. For more than 25 years Dr. Upledger has been treating autistic children and helping families through this approach. Cranial Sacral Therapy is a gentle, powerful form of bodywork that directly influences the brain and spinal cord. It is used to treat pain, discomfort or trauma to the head or face, including TMJ dysfunction and headaches. Cranial Sacral Therapy can also relieve physical and emotional trauma. In addition to his work with autism, Dr. Upledger has achieved dramatic results in treating post-traumatic stress disorder in Vietnam Veterans.
In addition to medical treatments for the physical symptoms of autism, there are numerous therapies that are needed to help autistic children. Special educational approaches are needed. They can include intensive behavior modification known as A.B.A. or LOVAAS, music therapy, speech therapy, auditory integration and sensory integration as well as play therapy.
We will hear from both the Centers for Disease Control and Prevention and the National Institutes of Health about ongoing research and future needs. Of particular interest is the Brink Township study that has been evaluating a cluster of autism in Delaware.
This hearing will raise more questions than answer today. We owe it to our children and grandchildren to insure that we’re being diligent in looking for the causes of autism. We have to do everything humanly possible to determine if there’s something that can be done to unlock our children from the prison of autism. I think that, as a top priority, we have to do much more research on the potential connection between vaccines and autism. We can’t stick our heads in the sand and ignore this possibility. If we don’t take action now, ten years from now may be too late, not only for this generation of children, but for our taxpayer-funded health and education systems that will collapse from trying to care for these children.
The hearing record will remain open for two weeks.