I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
Robert Kennedy Jr., the environmental activist and leading vaccine skeptic, says that it has been months since he has talked with White House officials about chairing a vaccine safety commission — and that the idea of such a panel may no longer be under consideration.
“I’ve had no discussions specifically about the vaccine safety commission, probably since February,” Kennedy told STAT. “You’d have to ask the White House. It may be that it’s evolved.”
Kennedy said, however, he has met with a series of top administration officials about vaccine safety since Trump took office, including officials at the upper ranks of the Food and Drug Administration and National Institutes of Health. He said those meetings took place at the request of the White House.
The number of people with a stake in the issue is going to mount. I am not saying that there will be a true increase in the prevalence of autism. As we saw in chapter 3, it is unclear how much of the apparent change involves awareness and diagnostic standards. Even if there has been a true increase in recent decades, there is no way of knowing whether it will go on. But the rise in the number of autism diagnoses and educational determinations will translate into a growing population of people who have lived with the autism label, and who think of themselves as autistic. Most in this category will have family members and other people who are close to them. They may be guardians or caregivers, or they may just be friends and relatives with a deep concern. Either way, autism will be part of their lives, too. Overall, the share of Americans who know someone with autism will surely top the 39 percent recorded in 2008. One study found that 60 percent of respondents in Northern Ireland knew someone with autism in their own family, circle of friends or co-workers. There is no reason to think that the figure would be lower in the United States.
For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE) The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies). As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”
Autism is political. It involves all kinds of government policy – from provision of education and social services, to regulation of insurance companies and medical professionals, to public funding of scientific research into its causes and treatment. The connections between government and autism reach farther than most people know. For example, many police officers and other first responders get training in how to deal with autistic people, who might react in unexpected ways during emergencies and crime investigations. Many organizations lobby policymakers and try to influence what government does about issues involving autism. Thomas Insel, director of the National Institute of Mental Health (NIMH), told journalist Andrew Solomon: “We get more calls from the White House about autism than about everything else combined.”
Autism is “political” in a broader sense. Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation. Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about? All of these questions, and many others, are the stuff of bitter political battles. The stakes are high: according to one estimate, the national cost of supporting people with autism adds up to $236 billion per year. Of course, such numbers themselves entail controversy. An alternative perspective is that they do not represent the cost of autism, but rather the cost of discrimination against people who have it, and the failure to help them lead independent lives.
According to the Centers for Disease Control and Prevention, one out of 68 — or roughly 1.2 million — people under the age of 21 in the U.S. is diagnosed with autism. While there are no reliable figures of how many autistic people are incarcerated, a 2015 report by the Department of Justice's Bureau of Justice Statistics found that 2 in 10 prisoners and 3 in 10 jail inmates reported having a cognitive disability. With more than 2.3 million people imprisoned in the U.S., it's fair to conclude that thousands of diagnosed and undiagnosed autistic people are behind bars with little to no support. ... As a prison volunteer, I've seen countless inmates over the years who were clearly developmentally disabled and yet stuck in a revolving door of incarceration. One inmate in particular named Manny sticks out in my mind. He was a large man, over six feet tall with large arm muscles and knuckles that bore the scars of many past fights.
It was my first time in a prison as a volunteer and I was nervous. Manny entered the cafeteria and immediately began waving at all of the corrections officers and inmates as they passed. A few patted him on the back and I could see him stiffen for a moment each time, his smile faltering, before he saw another familiar face and the smile returned. He noticed me and came over to say hello. He avoided eye contact, preferring to look at my shoulder. But he was curious as to who I was and eager to introduce himself. I reached out my hand but his smile faltered so I waved instead. That brought the smile back. He turned away and went to sit near the wall.
"Manny is very sweet, until he gets mad," the female officer standing nearby told me. "He goes crazy when he gets into a rage. Things just set him off. He's like a kid in many ways."
Another officer later told me that many correctional officers suspected he may be autistic, but without an official diagnosis, his violent outbursts led to more charges and stints in solitary because no one really understood how to handle him. That lack of understanding is a huge problem within the U.S. justice system today
This happened a few months ago, but in light of recent events in Charlottesville, it is timely.
Charlotte Helene Fien, 21, has Down Syndrome and autism. She sent her speech to the British House of Lords, from where it was forwarded to the United Nations Human Rights Committee at the United Nations, Geneva. where she delivered it in person on March 20.
Good afternoon my name is Charlotte Helene Fien.
I am 21 years old and have Down's syndrome and Autism.
In the 1930's and 1940's the Nazis decided to get rid of all disabled people.
More than 200,000 disabled people were murdered including many children with Down's syndrome.
Today, the same thing is happening.
A test that checks for Down's syndrome is being used to kill all babies with Down's syndrome. In Iceland, Denmark and China not a single baby with Downs Syndrome has been born for 7 years, SEVEN YEARS!
The goal is to eradicate Down's syndrome in future.
This makes me angry and very sad.
I have Down's syndrome.
I am not suffering.
I am not ill.
None of my friends who have Down's syndrome are suffering either.
We all live happy lives.
We go out to the pub,
have dinner parties at my friend Aimee's house,
have boyfriends and
have plans and goals for the future!
We just have an extra chromosome we are still human beings.
We are human beings.
We are not monsters
don't be afraid of us.
We are people with different abilities and strengths.
Don't feel sorry for me,
my life is great!
My goals are to find a job I love.
I love golf and would like to teach children to play.
I've been playing golf since I was 6 years old.
I want to live independently one day and support myself with my job.
I already travel on my own to different places even abroad.
Don't be afraid of me or feel sorry for me.
I'm just like you
I'm just like you but different.
I have an extra chromosome
it's not stopping me from enjoying my life.
Please do not try to kill us all off.
Do not allow this test.
If you do allow it you are no better than the Nazis
who killed 200,000 disabled people.
I have a right to live
and so do other people
like me"
YouTube link to hear her speak - https://youtu.be/1Xqku6RwaAY
When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.
Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women -- close to 100 percent -- who received a positive test for Down syndrome terminated their pregnancy.
While the tests are optional, the government states that all expectant mothers must be informed about availability of screening tests, which reveal the likelihood of a child being born with Down syndrome. Around 80 to 85 percent of pregnant women choose to take the prenatal screening test, according to Landspitali University Hospital in Reykjavik.
...
Using an ultrasound, blood test and the mother's age, the test, called the Combination Test, determines whether the fetus will have a chromosome abnormality, the most common of which results in Down syndrome. Children born with this genetic disorder have distinctive facial issues and a range of developmental issues. Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.
Other countries aren't lagging too far behind in Down syndrome termination rates. According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it's 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity -- and Down syndrome is included in this category.
The story quotes a pregnancy counselor:
"We don't look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder -- that's so black and white. Life isn't black and white. Life is grey."
