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Hey friends, this is a tough video to make. There's a lot of fear and confusion in the autistic community right now about a new autism registry being created by the US government. If you've heard bits and pieces about the NIH collecting our data and giving it to Robert F. Kennedy Jr. to study autism, and it's got your nervous system buzzing, you are not alone, and you're not imagining things. Here's what's actually happening. The National Institutes of Health, the NIH, is building a massive data platform to collect private medical information from Americans with autism, linking pharmacy records, lab tests, genomics, insurance claims, and even data from fitness trackers and smartwatches. This will all be compiled and shared with outside researchers for autism studies. Backed by the Department of Health and Human Services, which is now led by Robert F.
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Kennedy Jr. This was confirmed in a Council of Councils meeting at NIH just this week, and I'll include a link to the meeting agenda in the description below. I believe the video of that meeting should also be posted on the website in the coming week. So, yeah, if your response, your first response to this was, wait, what? Followed by a mix of dread, confusion, and outrage honestly same. Our community already deals with stigma and being misunderstood and over-medicalized, and now our data is being pulled into a system without our permission. We have every right to be concerned, but here's the thing, we're not powerless. So in this video, I'm going to give you seven real practical things that you can do to protect yourself.
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protect your data, and reclaim some peace of mind in the middle of all of this. The first thing that we can do is to know our rights. So under HIPAA, our identifiable medical data can't just be handed over without our consent. Even de-identified data, when combined with other sources, has to follow strict rules. You can ask for a record of where your data has been shared, and in some cases you can request limitations on that sharing. The second thing you can do is you can also check your devices. If you use a smartwatch or a health app, you can turn off syncing or auto-sharing. You can go into your privacy settings and opt out of data collection wherever possible. You can also be extra cautious with apps that track mood, sleep, or medical symptoms.
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Many of them sell de-identified data for research. The third thing we can do is ask our providers about data sharing. You can absolutely ask your doctor, therapist, or even your pharmacy, 'Do you participate in data sharing for research? Or can I opt out of having my data shared?' Most people never ask these questions, but the more of us who do, the more providers start thinking about consent differently. The fourth thing we can do is push for autistic representation and research. If they're going to study autism, autistic people deserve to be at the table, not just under the microscope. Reach out to groups like the Autistic Self-Advocacy Network or contact the NIH's Office of Autism Research Coordination and let them know. We want to know who's being selected for these studies.
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We want oversight and we want autistic researchers involved, period. I'm going to put contact information for this organization in the description below, along with a scripted message that you can copy and paste to use whenever you contact them. The fifth thing we can do is to speak up publicly. You're not alone in your fear, but let's turn that fear into collective action. Post your concerns, use hashtags like #ProtectAutisticPrivacy, share stories of your own autistic experiences with the hashtag. This is what autism looks like. Our visibility makes it harder for these efforts to stay in the dark. The sixth thing we can do is watch for research announcements. The NIH said that 10 to 20 groups will be chosen to analyze this data. That selection process hasn't been made public yet.
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So keep your eyes open. And when those names are announced, let's review them. Let's vet them. Let's hold them accountable. The seventh thing that we can do is to use your voice at the local level. Your voice matters even with your primary care provider or a local disability rights group. Ask them what they know. Tell them what you know. Ask for their support. A single conversation can ripple outward into broader awareness. Here's what I want to leave you with. It's okay to be scared, but don't let that fear make you feel alone. We're smart, we're capable, and we're allowed to ask questions to set boundaries and to demand transparency. This moment could be one where we get trampled on again, or we could use it as a turning point.
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A moment where the autistic community stands up and says, 'you don't get to use our data without our consent.' You don't get to study us without involving us, and you don't get to define us. If this video helped you feel a little more grounded or a little less alone, please share it with someone you care about. Community is so important now more than ever. And in the comments, let's talk. Let's keep the discussion going. What is one thing you wish researchers understood about autism before collecting our data? What's helped you feel more in control of your own digital privacy? Because the more we talk about this, the safer we become. So many in our community have been through so much. And even if you're not feeling strong right now, we're strong when we're together. I'm in this with you. I'm sending you my love, one breath at a time. We've got this.