THURSDAY, APRIL 6, 2000 House of Representatives, Committee on Government Reform, Washington, DC. The committee met, pursuant to notice, at 10:37 a.m., in room 2154, Rayburn House Office Building, Hon. Dan Burton (chairman of the committee) presiding. Present: Representatives Burton, Morella, Ros-Lehtinen, McHugh, Horn, LaTourette, Hutchinson, Terry, Biggert, Ose, Chenoweth-Hage, Waxman, Norton, Kucinich, Tierney, and Turner. Staff present: Kevin Binger, staff director; Daniel R. Moll, deputy staff director; David A. Kass, deputy counsel and parliamentarian; Mark Corallo, director of communications; S. Elizabeth Clay, Nicole Petrosino, and Nat Weinecke, professional staff members; Robert Briggs, deputy chief clerk; Robin Butler, office manager; Michael Canty, legislative aide; Scott Fagan and John Sare staff assistants; Toni Lightle, legislative assistant; Leneale Scott, computer systems manager; Lisa Smith Arafune, chief clerk; Corinne Zaccagnini, systems administrator; Phil Schiliro, minority staff director; Sarah Despres, minority counsel; Ellen Rayner, minority chief clerk; Teresa Coufal, minority staff assistant; Jean Gosa and Earley Green, minority assistant clerks; and Andrew Su, minority research assistant. Mr. Burton. If I could have your attention, please. I know a lot of people have cameras, and I hate to throw a wet blanket on those of you who want to take some pictures, but unless you are a member of the media, I wish you would not take any pictures during the hearing. We will try to get the people you want to take pictures of together later; but please do not take a bunch of pictures during the meeting because it will probably disrupt what we are trying to accomplish. Good morning. A quorum being present, the Committee on Government Reform will come to order. I ask unanimous consent that all Members' and witnesses opening statements be included in the record. Without objection, so ordered. I also ask unanimous consent that all articles, exhibits, and extraneous or tabular material referred to be included in the record. Without objection, so ordered. We do have some Members who have opening statements, and we will allow those, and if they do not choose to give an opening statement and want to prepare one for the record, that will be fine as well. This morning we are here to talk about autism. As we learned in our August hearing, the rates of autism have escalated dramatically in the last few years. What used to be considered a rare disorder has become a near epidemic. We have received hundreds of letters from parents across the country. In fact, here are some notebooks, and each one of the pages represents a parent who has a problem with a child with autism. They have shared with us their pain and their challenges. My staff tells me that some of them cried when they read some of these letters--and I have a pretty hard-nosed staff. I do not have to read a letter to experience the kind of heartbreak that is in these letters. I see it in my own family. I am very proud of this picture. The one on the left is my grand-daughter, who almost died after receiving a hepatitis B shot. Within a short period of time, she quit breathing, and they had to rush her to the hospital. My grandson, Christian, whom you see there with his head on her shoulder, according to the doctors was going to be about 6- foot-10--we anticipated having him support the family by being an NBA star--but unfortunately, after receiving nine shots in 1 day, the MMR and the DTaP shot and the hepatitis B, within a very short period of time, he quit speaking, ran around banging his head against the wall, screaming, hollering, waving his hands, and became a totally different child. We found out that he was autistic. He was born healthy. He was beautiful and tall. He was outgoing and talkative. He enjoyed company and going places. Then, he had those shots, and our lives and his life changed. I do not want to read all the things that happened to Christian, because I am not sure I could get through it. But unfortunately, what happened to Christian is not a rare, isolated event. Shelley Reynolds will testify today. Her organization, Unlocking Autism, will be displaying thousands of pictures of autistic children at the ``Hear Their Silence'' autism rally this Saturday. Forty-seven percent of the parents who provided these pictures feel that their children's autism is linked to the immunizations--almost half. We frequently hear about the children with chronic ear infections and children who became autistic after spiking a fever with their vaccinations. Liz Birt was one of the hundreds of parents who contacted us. Her 5-year-old son Matthew has been classified as autistic. He was developing normally. At age 15 months, following his MMR vaccine, he began to regress. Since the time of his vaccination, he has had chronic diarrhea. This is his picture-- a good-looking kid. This is very prevalent, this chronic diarrhea, in autistic children. Matthew also did not sleep on a regular basis for over 3 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 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 receive the MMR vaccine and have 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 that is a welcome relief for his family. Unfortunately, Matthew's story is not that unusual in children with autism. Our grandson has a similar problem. Unfortunately, it is important that I make two things very clear today. I, and I believe every Member of Congress, am not against vaccinations, and I do not think that every autistic child acquires autism after receiving childhood immunizations. I think slide 3 shows a lot of children who have had autism--is that correct--those are before-and-after pictures of the children. However, there is enough evidence emerging of some kind of connection for some children that we cannot close our eyes to it--we have to learn more. Dr. Mary Megson of Richmond, VA will testify about the correlation she has seen in children with autism and attention deficit disorder. She has seen a correlation between Vitamin A depletion and immune suppression after receiving the MMR vaccination. There are certainly children who are born with autism. They have what can be called ``classical autism.'' There is, however, a growing number of children who are growing 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 casein, 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? Dr. Goldberg will testify that maybe what we are seeing is not autism at all, but a neuro-immunologic dysfunction. I am very concerned about the increased number of childhood vaccines. I am concerned about the ingredients that are put in these vaccines. I am concerned about the way they are given. We have learned that most of the vaccines our children are given contain mercury, aluminum and formaldehyde. Last year, the FDA added up the amount of mercury our babies are being given to learn that in the first 6 months of life, they receive more mercury than is considered safe. Think about that--in the first 6 months of life, the FDA has said that children are receiving more mercury than is considered safe, and most of that is from vaccinations. Why is it that the FDA licenses vaccines that contain neurotoxins like mercury and aluminum? When asked about the increased rates of autism, many will immediately discount that there is even an increase--even though the latest statistics from the Department of Education show increased rate in every, single State. This slide shows you that every State has seen a dramatic increase. Others will say the increase is due to better diagnostic skills. Others will say it is because the diagnostic category was expanded. If we look at the slide showing California here, California has reported a 273 percent increase in children with autism since 1988. From this increase, 21 percent of all autistic children in California live in the 29th District, which is Henry Waxman's district, who is the ranking Democrat on our committee. Florida has reported a 571 percent increase in autism. Maryland has reported a 513 percent increase between 1993 and 1998. You cannot attribute all of that to better diagnostic skills. In 1999, there are 2,462 children ages 3 to 21 in Indiana diagnosed with autism. That is one-fourth of 1 percent of all the school children in Indiana, or 1 out of every 400; 23 percent of these children live in my district, the 6th District of Indiana. 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 Nation's 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, IN. 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 to properly address his autistic son's needs. He is forced to drive 12 hours every 4 weeks for his son's medical treatments. Dr. William Dankner, 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 battle of getting adequate education through the public school system. I think all of us who have autistic children or grandchildren know the problems that it involves. 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 are 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 2 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. We need to talk to State legislators around this country to tell them how important it is, with the explosion of autism, that these benefits be mandated by the States and be covered by insurance. California passed legislation recently to require insurance companies to cover autism. Parents spend $20,000 to $30,000 a year. What medical care is covered is often done after extensive struggles with insurance companies. 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 adviser to the Office of Alternative Medicine at the National Institutes of Health, will testify on the use of craniosacral therapy. He is the director of the Upledger Institute in Palm Beach Gardens, FL. For more than 25 years, Dr. Upledger has been treating autistic children and helping families through this approach. Craniosacral therapy is a gentle, powerful form of body work 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. Craniosacral 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 that can include intensive behavior modification, known as ABA, Lovass, 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 Brick Township study which has been evaluating a cluster of autism in New Jersey. This hearing will raise more questions than we can answer today. We owe it to our children and to our grandchildren to ensure that we are being diligent in looking for the causes of autism. We have to do everything humanly possible to determine if there is something that can be done to unlock our children from the prison that they are in as a result 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 cannot stick our heads in the sand and ignore this possibility. If we do not take action now, 10 years from now, it may be too late, not only for this generation of children, but for our taxpayer-funded health and education systems, which could collapse from trying to care for all of these children. The hearing record will remain open for 2 weeks. I now yield to my colleague from California, Mr. Waxman, for his opening statement.
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.