Neurodivergent News - April 2025

This month started off like any other April has for me over the last 3 years, getting the month’s worth of Autism Acceptance Month social media posts ready for publication. But it quickly became apparent that this wasn’t going to be a normal April and everything to do with Autism Acceptance was going to be overshadowed by what is happening in the world today. For that reason I’ve decided not to do the normal Neurodivergent Newsletter for this month…because I think we all need to talk about the elephant in the room. (Editor’s note: I got sick half way through writing this post so it’s a little bit late, sorry!)

Before we really dive into it I want to stress that this newsletter will contain a deep dive into news that is very upsetting. It will also contain personal opinions on the events that have been taking place. You may not agree with everything I say, but it is my hope that you will continue reading anyway so that you can learn how others are feeling.

Finding a Cause

Anyone who has been following my newsletter knows that there are new studies showing that something new causes autism practically every month. Tylenol, baby food, and even whooping cough have all been blamed, some falsely. Researchers have been looking for the cause for decades and finding a whole lot more things that cause it than not. Yet, somehow RFK Jr. seems to think we can have a definitive answer to what is causing Autism by September, less than 6 months from now. They want a nice tidy answer, a boogieman they can point to and say, “That. That is the evil that is corrupting your sweet babies.” Because let’s not forget, that anti-vaxxers like RFK Jr. think of autists like this very real short video that was made by Autism Speaks.

The administration wants to be able to declare that a particular thing causes autism and once that thing gets banned…autism magically stops existing. Autism tests won’t need to be administered anymore, autism rates will stop getting reported on in the US, and it will look like autism was suddenly cured. This is the exact same kind of thinking that Trump had in regards to Covid testing, “If we stop testing right now, we’d have very few cases, if any.”

Not even 2 weeks after RFK Jr. announced they would be finding what causes autism they’ve already started walking it back. Now, instead of having answers in September they’re hoping to start getting answers within a year. Because science takes time, which is perfectly logical. A year is also enough time for people to have forgotten these bold claims because the internet (and everyone else) has the attention span of an ADHD goldfish and there is simply so much insanity going on in the world right now it’s impossible to track it all. It’s also likely that if there are ever answers from these studies they will be pushing RFK Jr.’s anti-vax agenda, or used as some other propaganda against autists. These studies are the equivalent of beef lobbyists funding a study that shows veganism is bad for your health.

The Enemy of My Enemy is My Friend…Briefly

I do need to give a small bit of props to RFK Jr. He managed to unify all the large autism charities in the United States this month when they put out a joint response to his comments on national television in which he said that autism destroys families and that autistic people will never go on dates amongst other things. The joint statement was signed by ASAN (the Autistic Self Advocacy Network), Autism Society of America, and many others, including Autism Speaks. ASAN has never been shy about their dislike of Autism Speaks and everything they stand for. In fact, just a few days after the release of the joint statement, ASAN went back to making posts that are discouraging people from supporting Autism Speaks. It was a beautiful show of unification from all parties to fight a common enemy. I hope we will continue to see this kind of action in the future, because they aren’t stopping.

He’s Making a List

All of that was just the lead up to the main story…the most frightening story of them all. RFK Jr. wants a list of all autistic people in the United States along with all of the medical conditions they have. The claim is that this data will be used in their attempts to research the cause of autism, but it raises a lot of red flags.

This story has been an ever evolving rollercoaster. First the list was announced, and then it faced backlash, then they said they weren’t going to be making a list of autistic people…and yet just a few days ago they said that the autism list would be compiled using Medicaid and Medicare lists.

So, what do we know at this point?

1. Yes, RFK Jr.’s list of autistic people is happening.
2. The list will be made up of those in Medicaid and Medicare systems at the very least. There has been mention of getting data from insurance companies as well but right now it is unclear if that will happen.
3. This list is being compiled to use as a resource in RFK Jr.’s goal of finding a cure for autism.
4. This is being used as a trial and may be used again in the future for disabilities, disorders, and illnesses.
5. There is a lot of potential for the abuse of this list, something which has caused a lot of fear and anger in the autism community.

If you want a full breakdown of the events of this story then I highly recommend reading this Snopes article on the topic. It goes into far better details about the timeline over the last month than I possibly could.

If you’d like a better look at the autism community’s reaction to RFK Jr. and his autism list then I recommend reading this opinion piece written by author and father of an autistic child, John Harris. The title of the piece alone is enough to tell you his feelings on the matter “RFK’s statements prove autistic people and their families everywhere should fear Trump and his allies.”

Reactions

I’ve seen a lot of different reactions across the internet to the news. I’ve seen a lot of fear, a lot of people questioning if they should continue to pursue a diagnosis for them and their child. I’ve even seen therapists who have said they are going to stop diagnosing autism for the time being and instead give them a diagnosis of general anxiety disorder. Though, if this is indeed just the first list, then it probably won’t be long before GAD has a list of its own, especially as it is one of the main reasons people give for not joining the military these days.

If you’re afraid, first, please know that you are not alone. There are millions all across the USA who are feeling exactly the same way.

If a diagnosis is something that is coming up in your future and you’re questioning it keep in mind that self diagnosis is valid. Getting an official diagnosis is only useful for getting accommodations in work and school. You won’t get a piece of paper saying you’re autistic, you won’t magically unlock a bunch of tools that you can’t already use. In fact, very little outside of those accommodations changes. You’re allowed to use the coping mechanisms without a doctor telling you that you need them.

Good workplaces and bosses will be understanding. You don’t have to tell them that you aren’t seeking an official diagnosis. Simply tell them that you’re stuck on a waiting list to get diagnosed, but that you’re pretty sure you’re autistic and you’d like to start implementing some coping mechanisms that will help you work more efficiently. Is it a bit of a lie? Yes. But, it’s one that will provide a positive outcome with little cost to the boss, so there really is no harm in it.

It’s a bit more difficult where children are concerned. Their accommodations tend not to come into being without a diagnosis and often things like fidgets are banned in classrooms unless you have a medical need for them. This is where communication comes in. Talk to your child’s teacher at the start of the school year. Email them your concerns and what accommodations will help improve their classroom experience. Is it a guarantee that things will go smoothly? No, not at all. But it is better than doing nothing or facing the possibility of them being put on a list for life.

Fight Back

This isn’t the end of the road, we still have the opportunity to fight this. Autism activist That Spicy Autistic Femme has offered these suggestions for how you can fight against this list, even if you live internationally.

1. Raise Public Awareness
Educate others on the risks of mass data collection—especially how it could be used to stigmatize or control autistic individuals.
Use social media platforms (like your Facebook page) to amplify autistic voices and expert critiques of the proposal.

2. Support and Signal Boost Advocacy Groups
Organizations like ASAN (Autistic Self Advocacy Network) and NeuroClastic are actively opposing this registry. Follow their updates, share their statements, and support their campaigns.
Donate or volunteer if you're able.

3. Contact Legislators
Call, email, or write your representatives in Congress and demand:
Oversight hearings on the legality and ethics of the proposed registry.
Legislation preventing government surveillance or misuse of autistic individuals’ health data.
You can use tools like Resistbot to send quick messages to officials.

4. Demand Transparency and Consent
Push for informed consent laws that ensure no one’s medical data is included in such a registry without their explicit permission.
Advocate for strong privacy protections and enforcement of HIPAA violations.

5. Collaborate with Journalists
If you or others have concerns or direct knowledge of questionable data practices, reach out to investigative journalists.
Getting the story into major media outlets can pressure officials and agencies to back down.

6. Legal Action (if necessary)
If the registry is implemented, there could be grounds for a legal challenge based on:
HIPAA violations
Violation of civil liberties
Disability rights protections (under ADA or other laws)
Support or join class-action efforts if they emerge.

Here’s how people outside the U.S. can help:

1. Amplify the Issue Internationally
Talk about it online: Share articles, ASAN’s opposition statement, or infographics explaining why this is harmful.
Use hashtags like #StopTheRegistry, #NothingAboutUsWithoutUs, or #AutisticRights to connect with global audiences.
Tag U.S. officials, media, and advocacy orgs to increase visibility.

2. Support U.S.-Based Autistic Advocates
Follow and support autistic-led organizations like ASAN, AWN (Autistic Women & Nonbinary Network), and individual autistic activists.
Signal boost their campaigns and petitions.
Donate if you're able to; even small amounts go a long way.

3. Engage Global Advocacy Networks
If you’re involved with disability or human rights groups in your own country, encourage them to make a public statement of solidarity.
Request that they contact international human rights bodies or medical ethics councils (e.g. WHO, UN CRPD Committee) to express concern.

4. Pressure Tech & Data Companies
Many of the companies whose data could be used (like Google, Apple, Fitbit, insurance companies, or genomics firms) operate globally.
Non-U.S. users and consumers can pressure these companies to reject cooperation with unethical data collection and surveillance.

5. Join International Petitions & Campaigns
Help build global numbers. U.S. policymakers often take more notice when there's international condemnation, especially from allied nations.

6. Watch for Spillover
Advocate in your own country to ensure nothing similar can happen locally.
Push for stronger data privacy and anti-surveillance laws, especially regarding disabled people.

I know these are difficult times. But remember; you are valid, you are loved, and we are going to fight this thing to the bitter end.

See you all again soon.