Stephen's Autism Journal: 2009

On Wednesday, we met Becky Prom, the director of the group home in Appleton.

She gave us an update from Stephen's information sheet.

A lot of talk about dentistry. Stephen has had little success with toothbrushing. His dentist, Dr. Steinmetz, was asked about a strategy. He stated to continue doing the same thing but not too being too aggressive brushing in back(where some plack is starting to form). It is feared that the aggressive hand over hand would lead to regressional resistance. Steinmetz says to emphasize the front and sides without a finger pad. The school has said they have had some success with toothbrushing. Prom said she would take as an action item to ask the school more about what they are doing.

There was consensus that Stephen should switch fo a non-floride toothpaste that would be less dangerous to swallow. Becky will discuss the change with staff at the Agape House. Dr. Steinmetz said Stephen needed to be sedated for any involved dental work.

Also, Stephen will be going to have a vision test at Shopko on February 11th.

Stephen's psychiatrist Dr. Phillips says that there are no recommendations for changes in medication. No significant changes in behavior. Becky did mention two severe tantrums which happened in November and December. A cause could not be determined for either one. It's like they came out of the blue. There have been two incidents of gagging. One in November and one in December. One involved a tactile toy. There have been about a dozen attempts to gag that were prevented by a worker at the house. "Finger out of mouth" is the command and it seems to stop him in what he is doing. Becky reports that Stephen sometimes taunts by putting his finger close to the mouth and smiling.

Sometimes, it is reported, that Stephen gets more cuddly when parents leave from visits. Sometimes he gets a little teary eyed.

He three BM's on his own. Becky postulates that consistent opportunities to go into the bathroom leads to more success in this area. He is toileted every hours and is woken up at 11am and 4am to go to bathroom. He wakes every morning at 6am.

Stephen remains on colace 100 mg. He takes this every day for constipation, to counteract the drying up tendencies of Risperdal. He takes one mult-vitamin a day and Risperdal 1 milligram a day.

All meds are given in applesauce and he is doing quite well with this method.

Stephen is given two choices of outfits to where and he picks one. It's not certain how random of a choice this is and how much is real discrimmination.

Staff leader Ann reports that she takes Stephen to church now on a regular basis. He seems to like the music most of all, but hides behind Ann during the sharing of the peace. Nail care is once a month. He is also helping with laundry, taking the basket downstairs. He also likes to push the button on the vacuum cleaner.

An incident of playful teasing was reported by Becky. Stephen would reach over to give her a cheeto and then would pull it away at the last minute from her her outstretched hand. He would giggle thinking is was hilarious. She finally did get a Cheeto and Becky got a kick out of it too.

It was repeated that Stephen needs to be monitored in public because he doesn't understand pedestrian safety skills, does not comprehend them.

Joanne Schneider of Social Services said she was working to get a "Pocket Talker" at home, similar to one they were using at school. It is a something on his belt that he can manipulate by choosing buttons for different things like drink, food, outside, toilet, etc. Schneider said the waiver would pay for this and that it would be a helpful vehicle for Stephen to communicate with others. Becky, Debbie and Jeff agreed.

We also suggested that Stephen be given more chapstick because his lips were dry and could get infected. We also said he drinks a lot when when we take him out for lunch and were concerned how much he drinks at the house. Becky responded by saying that Stephen is sometimes getting up and getting his own water from the sink. BIG PROGRESS!

We were also assured that there would be at least two workers in the house at a time since they were adding another child February 16th. Jeff and Debbie said they were happy about that, and were a little nervous about only one staff member for two kids.

We jointly set our next meeting for April 13th at 2:30pm at the house. We thanked Becky and Joanne for their time and efforts and wished them a good afternoon. Joanne said she would visit the school and then email back info on the pocket talker as soon as she could.

A new book defending vaccines, written by a doctor infuriated at the claim that they cause autism, is galvanizing a backlash against the antivaccine movement in the United States.
Ryan Collerd for The New York Times

But there will be no book tour for the doctor, Paul A. Offit, author of “Autism’s False Prophets.” He has had too many death threats.
“I’ll speak at a conference, say, to nurses,” he said. “But I wouldn’t go into a bookstore and sign books. It can get nasty. There are parents who really believe that vaccines hurt their children, and to them, I’m incredibly evil. They hate me.”
Dr. Offit, a pediatrician, is a mild, funny and somewhat rumpled 57-year-old. The chief of infectious diseases at the Children’s Hospital of Philadelphia, he is also the co-inventor of a vaccine against rotavirus, a diarrheal disease that kills 60,000 children a year in poor countries.
“When Jonas Salk invented polio vaccine, he was a hero — and I’m a terrorist?” he jokes, referring to a placard denouncing him at a recent demonstration by antivaccine activists outside the Centers for Disease Control and Prevention in Atlanta.
In recent years, the debate over vaccines and autism, which began in fear and confusion, has hardened into anger. As Dr. Offit’s book details, numerous studies of thimerosal, measles virus and other alleged autism triggers in vaccines have been conducted, and hundreds of children with diagnoses of autism have undergone what he considers sham treatments and been “cured.” Both sides insist that the medical evidence backs them.
As a result, “a few years ago this ceased to be a civil scientific discourse and became about crucifying individuals,” said Dr. Gregory A. Poland, chief of vaccine research at the Mayo Clinic, who says he has had threats against his children. “Paul is a lightning rod, a figure who goes charging into the fray.”
Those backing Dr. Offit say he was forced into the role. Opponents of vaccines have held rallies, appeared on talk shows like “Oprah” and “Imus in the Morning,” been the heroes of made-for-TV movies and found a celebrity spokeswoman in Jenny McCarthy, the actress and former Playboy model who has an autistic son. Meanwhile, the response from public health officials has been muted and couched in dull scientific jargon.
“If the surgeon general or the secretary of health or the head of the C.D.C. would come out and make a really strong statement on this, I think the whole thing would go away,” said Dr. Peter J. Hotez, president of the Sabin Vaccine Institute, who has a severely autistic daughter whose disease, he argues, is genetic.
Asked why public health officials have been reticent, the acting surgeon general, Dr. Steven K. Galson, issued a statement saying that “childhood immunizations are one of the greatest achievements of all time” and that “scientific evidence clearly shows that vaccines do not contribute to autism.” He has spoken on issues like obesity, tobacco, air travel and exercise, but his office said he had not been questioned by journalists about vaccines and autism.
Dr. Offit’s book, published in September by Columbia University Press, has been widely endorsed by pediatricians, autism researchers, vaccine companies and medical journalists who say it sums up, in layman’s language, the scientific evidence for vaccines and forcefully argues that vulnerable parents are being manipulated by doctors promoting false cures and lawyers filing class-action suits.
“Opponents of vaccines have taken the autism story hostage,” Dr. Offit said. “They don’t speak for all parents of autistic kids, they use fringe scientists and celebrities, they’ve set up cottage industries of false hope, and they’re hurting kids. Parents pay out of their pockets for dangerous treatments, they take out second mortgages to buy hyperbaric oxygen chambers. It’s just unconscionable.”
His opponents dismiss him as “Dr. Proffit” because he received millions in royalties for his RotaTeq vaccine. One group he criticizes harshly in the book is Generation Rescue, which advocates treating autistic children with wheat- and dairy-free diets, vitamins and chelation to remove mercury from the body. Ms. McCarthy, her companion, the actor Jim Carrey, and Deirdre Imus, wife of the radio host, are all on its board.
J. B. Handley, who founded Generation Rescue in 2005, rejected Dr. Offit’s attacks, saying: “We have hundreds of fully recovered children. I’m very frustrated that Dr. Offit, who’s never treated an autistic child, is spending his time trying to refute the reality of biomedical recovery.”
He scoffed at the idea that Dr. Offit had had numerous death threats but condemned threats generally, saying he had received some himself. “No one should ever do that to another human being,” he said.
Dr. Offit now has his own celebrity ally, the actress Amanda Peet, who was introduced to him through a brother-in-law, a doctor at his Philadelphia hospital.
“Where I live in L.A.,” she said in a telephone interview, “there’s this child-rearing trend — only feed your kids organic food, detoxify your house. And there’s a lot of anticorporate fervor, anti-pharmaceutical company fervor.”
When she was pregnant, she said, “I’d have lunch with my friends who were moms, and they’d say they wouldn’t vaccinate, or would space out their vaccinations and hadn’t I heard?”
After quizzing several doctors in her family and Dr. Offit, she eventually agreed to become a spokeswoman for Every Child by Two, a vaccine-advocacy group founded by Rosalynn Carter, the former first lady.
In an interview with Cookie, a magazine for parents, Ms. Peet called antivaccine parents “parasites” because they relied on other children’s immunity to protect their own. She later apologized for the word but emphasized that parents should get their medical advice from doctors, “not from me or any other celebrity.”
Dr. Nancy J. Minshew, a neurologist at the University of Pittsburgh Medical Center and a leading autism expert, said she had begun telling any parent asking about vaccines to read the Offit book. A brain-imaging specialist who gets no money from vaccine companies, she said she had never met or spoken with Dr. Offit.
Autism, she said, is one of many diseases, like dyslexia, Elephant Man’s disease, tuberous sclerosis and schizophrenia, that are caused by genetic flaws but show no symptoms for years.
She blamed journalists for “creating a conspiracy where there was none.” By acting as if there were two legitimate sides to the autism debate, she said, “the media has fed on this — it’s great for ratings.”
Many doctors now argue that reporters should treat the antivaccine lobby with the same indifference they do Holocaust deniers, AIDS deniers and those claiming to have proof that NASA faked the Moon landings.
Dr. Offit’s book traces the history of autism theories, starting with the child psychologist Bruno Bettelheim’s blaming “refrigerator mothers.” It describes early false cures, including “facilitated communication,” in which assistants helped mute children type their thoughts; head-squeezing by osteopaths; cod liver oil; diets; and a 1998 fad for secretin, a pig hormone. It sums up 16 epidemiological studies showing no link between autism and either measles or thimerosal, a vaccine preservative.
To the newer argument that vaccines overwhelm babies’ immune systems, Dr. Offit notes that current shots against 14 diseases contain 153 proteins, while babies cope with thousands of new foreign proteins daily in food, dirt and animal hair, and that the smallpox vaccine that nearly every American over age 30 got as a child contained 200 proteins.
Arthur Allen, the author of “Vaccine: The Controversial Story of Medicine’s Greatest Lifesaver” (W. W. Norton, 2007), has publicly debated other journalists who argue that vaccines cause autism. Six years ago, he wrote a seminal article in The New York Times Magazine titled “The Not-So-Crackpot Autism Theory.” He later changed his mind and now “feels bad” about the article, he said, “because it helped get these people into the field who did a lot of damage.”
Dr. Offit’s book “needed to be written,” he said. But he is skeptical that it will end the struggle.
“There are still people who believe fluoride is dangerous, who think jet contrails cause cancer,” he said. “I’m waiting for the debate to get beyond that, but you’re not going to convert some people.”