It is almost the end of Autism Acceptance Month. But the government keeps on hurting autistic and other disabled people. Last week, we joined other big autism and disability organizations to put out a statement.
In the statement, we say that we agree on three basic things:
- Vaccines do not cause autism.
- Autistic people deserve respect and support.
- Policy-makers should look at autism research before making new autism policies. Research can show proof that a new policy might help or hurt autistic people.
Right now, some people in the government don’t agree about the things we agree about. These people are making policy choices that don’t help us. For example:
On Monday, April 21st, National Institutes of Health (NIH) Director Jay Bhattacharya said some things in a meeting. He said that the Department of Health & Human Services (HHS) plans to create a registry of autistic people. NIH is a part of HHS that does research about medicine and health.
HHS in the part of government in charge of autism services and research. Robert F Kennedy Jr. (RFK Jr. for short) is the head of HHS. The week before, RFK Jr. said he wanted to use medical information to study the cause of autism.
A registry is a list of people that the government keeps. This registry would collect private medical information about autistic people. The registry could get used to take information for research studies. Dr. Bhattacharya said some of the information used to make the registry could come from things like:
- medical bills,
- people’s medications, and
- information from smartwatches or other devices that record health information.
Later that same week, HHS took back what NIH Director Bhattacharya said. HHS said that they were not going to make a registry. But HHS will still collect information about autistic people. Instead, HHS said they will just use information from lists that already exist. These lists are not supposed to have information about who someone is. If these lists have information about who people are, that information is supposed to be taken out.
But HHS has not given many details about what they plan to do. We are worried that HHS and NIH may not do what they are supposed to. We are worried they won’t take out the information that says who people are.
We have a lot of questions about this, like:
- What kinds of information will be collected from the lists that already exist?
- What new kinds of information might get collected?
- Will any of this information get used to show who someone is? This could be things like:
- people’s names
- addresses
- birthdays
- Will the government do anything to protect autistic people’s privacy when collecting information?
- Will people be told their information is being used?
- Will people be able to choose to not have their information used?
- Where will the information get kept?
- Who will get to see the information?
- What studies will this information be used for?
We think the government must answer these questions. The government has done a bad job of following what autism research says. They have not shown that they understand autism. They said lots of bad things about autistic people. We don’t think the research they want to do will help us. We are worried that they won’t keep our information safe.
What RFK Jr. and Director Bhattacharya said about studying the cause of autism makes us worry. We already know that autism is a genetic disability. That means autistic people are born autistic. Lots of studies have shown that people are born autistic. We do not think autistic people’s information should get used for more studies like this.
It is normal for studies to use information that doesn’t show who someone is. Lots of studies that help autistic people get done that way. But we are worried RFK Jr. will do studies the wrong way to lie about how autism works. We are worried the people he hires to do studies will lie about what the studies say.
The person RFK Jr. hired to help run autism studies at HHS is named David Geier. David Geier did a study before about autism. His study did experiments on autistic children. He said that he could cure autistic children by giving them dangerous amounts of a drug. He said that study proved vaccines cause autism. But David Geier lied.
David Geier isn’t a doctor. He shouldn’t have been experimenting on autistic children. He lied and said that his experiments were safe. He said other doctors had looked over his studies and said they were okay. These things are not true. David Geier should never have experimented on autistic children.
That’s why we are worried that David Geier will work on autism research at HHS. We think David Geier will do the same bad things he did before in his new studies. We think that is why RFK Jr. hired him. We don’t think David Geier or RFK Jr. care about our safety. We will keep watching the study. We will explain what the study says when it comes out.
We are also worried about possible cuts to disability services. Reporters found a draft budget proposal last week. A draft budget proposal is a plan for how parts of government want to spend their money. This draft proposal was from the Office of Management and Budget (OMB). OMB’s job is to look over the whole U.S. budget.
The draft proposal is very bad. It says it will make big cuts to important programs that people with disabilities rely on.
Here are some examples of programs the proposal would cut:
- State Councils on Developmental Disabilities (DD Councils). They help people with intellectual and developmental disabilities get Medicaid waivers and other support.
- Protection and Advocacy (P&A) systems. They give legal help to disabled people in all US States and the US Virgin Islands.
- University Centers for Excellence in Developmental Disabilities (UCEDDs). These programs help students with intellectual and developmental disabilities go to college.
- The Administration for Community Living (ACL). This part of government helps disabled people live independently. They make sure the human rights of disabled people are protected.
Here are some things our community can do this week:
- Share the joint statement debunking what RFK said about autism.
- Share our most recent statement about the HHS autism study and registry
- Call your members of Congress. Here’s how.
Tell them you want no cuts or changes to Medicaid. Tell them no work requirements or new disability verification. You can also tell them you don’t want cuts to disability services like:- Protection and Advocacy agencies
- State Councils on Developmental Disabilities
- University Centers for Excellence in Developmental Disabilities.
- If you can, this is also a great time to plan an in person meeting with your member of Congress. Many will be home for the next few weeks.
- You can also share your story about Medicaid for a policy purpose with story banks: