Structured Success

Long form content from a person with one of the shortest attention spans

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Sensory issues suck. But we use them to self-sooth and self-regulate

We need to stop overlooking sensory issues for autistic and/or ADHD people. They can have a major impact on our ability to function, both negatively and positively. Overstimulation and overload can make focusing hard to impossible, spiral us into unwanted emotions, or shut us down entirely. At the same time, our senses can be really grounding, intense sensations can be really enjoyable, and the right stimulation can be regulating.

What I'm saying is that we can also use these same heightened senses to self-regulate or self-soothe if we do it right. Let's talk about how to do that, and walk through a worksheet to help.

The Impact of Sensory Issues

Most autistic people, and many people with ADHD, are highly impacted by our sensory world, although usually in different ways. Autistic folks may be highly, sometimes painfully, sensitive to sights, sounds, and so on. We can react strongly to these sensations, and these sensations can have a huge impact on our mood and ability to function. Sensory issues looms large for many of us, threatening to severely limit our executive functioning, energy levels, or even our ability to speak.

For ADHD'ers, our senses can be a major source of distraction and energy loss. We often have trouble filtering relevant sensations from non-relevant ones and, combined with our impulsive minds, often find our attention switching to distracting or unhelpful sensory input. This impacts our focus, sure, but putting in the cognitive effort over and over again to pull our attention back on track is utterly exhausting. This has a major impact on our mood and energy levels.

However, being highly sensitive or responsive to sensations isn't always only a bad thing. Usually, if some sensations are painful, uncomfortable, or unpleasant, there are also sensations that are soothing, comforting, or joyful. If some stimulation distract us, other stimulation might lock us in. The goal of this worksheet is to find those pleasant, joyful, or regulating sensations, so

Let's Brainstorm

For a first step, think about soothing, comforting, or regulating sensations that you already know and might already be using! Think of sensations you keep coming back to or ones you enjoy. Write these down.

At the moment, it's alright if you can't think of any at all or if you are overflowing with options. These pleasant, soothing sensations can be just about anything. They could be running your hand on a cool wall, listening to thrashing metal music, kaleidoscopic light patterns, your favourite blanket, the feeling of a tight hug, and on and on.

While brainstorming, remember to include sensations that come from body position, closeness to people or objects, movement, or balance, as well as the traditional senses of sound, sight, smell, taste, and touch. This is so important because these non-traditional senses are often the basis for how we stim.

Wait... are these just stims?

Stims are essentially what we're looking for here, yep. Often, stims, or self-stimulating behaviours, are subconscious or learned ways of using movement and sensations to self-soothe. They often come up in stressful, understimulating, or dysregulating situations and may be repeated as needed to manage stress and re-regulate. Stims are generally associated with being autistic, but everybody stims.

The fact that everyone stims also means that everybody can benefit from being aware of which sensations bring them joy, peace, and guide them towards having self-control... and which ones don't.

Filling in the gaps

Brainstorming without any prompts can be overwhelming or inspire decision paralysis. If this happened to you, or even if you have lots of ideas for self-soothing sensations, let's look at some prompts to fill in any gaps. The page below has dozens to choose from, such as do you prefer vivid colours or pastels? Shiny or matte finishes? Look these over, and if any of them speak to you, or remind you or other sensations you find joyful, write them down too.

In this step make sure that you only write down examples that you actually find soothing or joyful. After all, we aren't looking for the lesser of two evils.

Overcoming the biggest barrier

Once we have a list that we can work with, it's time to tackle the biggest barrier to using any strategy: accessibility. We're often least able to remember our strategies, or make decisions, when we actually need them. This means that we need to make it dead simple to find, decide on, and use our strategies to give us the best chance of accessing them when we need them. So, let's make those decisions now:

Find a few examples (perhaps 5-10) that are easy to use and available most places you go. The fewer steps, tools, or materials you need for these examples, the better in my opinion.

For each of these examples, take a moment to write them in as clear and action-focused language as you can so that dysregulated you needs to decode as little as possible. When you're comfortable with the wording, write these on a business card or piece of paper you can keep with you. (I've included some templates below if you'd like to use those).

For places where you spend the most time, we want to make these examples super accessible here as well. Take a few minutes to make these examples eye-catching, easy-to-read, and aesthetic. Make them something that you enjoy, or at least that you don't mind, looking at. Include art, graphics, or designs that speak to you or feel meaningful, and place them in a visible spot where they easy to find, even when you're feeling utterly awful.

Taking the time now to make sure our strategies are accessible, and as free of barriers as possible, will make it more likely that we use them when we need them. This is useful for most people and most strategies, but absolutely essential for many ADHD and/or autistic folks for whom dysregulation hits like a Mack truck.

Practice, Practice, Practice

Now that you have these examples written down in a place where you see them and find them again, it's time to practice actually using the. This could be the next time you start to feel overwhelmed, or even when you just don't feel quite right. In these situations, using one or more of these examples might be able to help you settle, and the more you use them the easier using them will become. So take the time to practice these strategies and, as you need to, come back go through this worksheet again to update your examples and find new sources of sensory joy in your self-regulation.

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In addition to getting early access to this post, folks who support me on Patreon also get access to a PDF version of this worksheet that you can edit and make your own. If you aren't a patron, please consider joining for early access, exclusive content, and community.

Speaking of those great souls who help support this work, thank you to each and every one of you:

Luke, Emily Faalasli, Meghan Premo-Hopkins, Anne Lee Landry, & Calle Englund

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Emotional distress can be many different things, including panic attacks, meltdowns, shutdowns, dissociation, rage, or depressive crisis.

They're all characterized by overwhelmingly intense emotions that lead to a loss of control of our thoughts, actions, or feelings in our body. These emotions can spiral back in on themselves, making for a feedback loop that makes the situation worse and worse.

Usually, however, there are signs that we're struggling long before we end up in emotional distress. Having the self-awareness to be able to see these signs is an important skill.

But, actually trusting ourself enough to stop when you see them is often the harder skills to master. That's what helps us avoid distress

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There's a lot of advice directed at parents of autistic people that boils down to invasion of privacy.

Autistic children should have the same rights to privacy, extra-familial support, and personal space as non-autistic people, and that should go without saying. SHEESH

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So many different aspects of psychology cause feedback loops. They can push us towards skill specialization or hyperfocus. They can build us towards mania or depression. They can reinforce trauma responses and maladaptive coping mechanisms.

Basically, what happens is that, in response to an initial situation, we can experience behaviour, thoughts, emotions, and sensations that reinforce our initial response. For example, it is nature to feel sad when we fail a test or don't get the job we applied for, but this can cause us to think about other times we've failed, feel doubtful of our abilities, or downplay our strengths. This encourages to us feel emotionally worse, which starts the cycle over again.

Another example is anxiety. We might have a realistic worry about being awkward when talking to someone new. However, this can lead us to avoidance, where reduce the amount of time we around strangers. This avoidance makes the interaction feel less practised and more threatening which strengthens our anxious feelings and encourages future avoidance.

Understanding these feedback loops doesn't mean that we'll always escape them and everything will be better forever, but it does allow us to understand what's happening, develop a plan, and maybe prevent them from getting worse.

This is HUGE in terms of mental health.

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Getting a diagnosis is associated with both positive and negative consequences. On the good side, diagnoses can help us understand ourselves and plan appropriately for the future, including setting realistic treatment goals. They can also enable us to identify and build supports towards personal growth.

On the other hand, diagnoses can feel like a burden to shoulder, adding to self-shame and undermining self-esteem for some people. They can lead to a decrease of support from people in our lives sometimes, and can encourage stereotyped thinking and expectations.

On the whole, getting diagnosed with any neurodevelopmental condition is a mixed bag. There's some good that comes from it, but also some bad, and the amount of either really depends on the person and their context.

Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC8727520/

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I think that I've found today's ADHD champion.

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Me: I don't need AI to summarize this document. I wrote it. I need AI to f%^ off

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One thing I learned teaching at University is that accommodations that help one person sometimes negatively affects other people.

Clear, detailed, specific instructions, for example, can massively help autistic and anxious students, but might overwhelm ADHD, PDA, or other anxious students.

Flexible deadlines can be really helpful for some ADHD students or students with anxiety, but they can also trigger executive dysfunction.

Interactive elements, ice breakers, and group work can offer much needed stimulation and hands-on learning for some ADHD'ers, but can overwhelm other students.

All of this means there is no one universal way to make teaching, or workplaces in general, accessible to everyone.

Instead, accessibility needs to be a constant process of being flexible in our approach to meet different people's needs, sometimes in completely opposite ways

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Goals are hard for ADHD'ers. Here's how to make it easier.

Goals, dreams, and aspirations can be really hard for many of us with ADHD. Our interest-based nervous system can struggle to connect short-term actions to long-term results. We can struggle to sort through our rich internal world to figure out what even are goals. And we can struggle to remember the goals we do have. …so, I made a thing to try to help:

Together, let's walk through the steps of identifying, organizing, and prioritizing our goals, all while building a forest you can display as a reminder of the actions you can take and the directions you want to go! Making our goals visible, interesting, and aesthetic is actually a great way to remember them and, only by remembering and feeling motivated by them are we able to make progress towards them.

First things first though, we need to start by identifying the goals!

Some ADHD folks struggle with identifying goals because we can so easily get stuck moving from crisis to crisis. This makes it so hard to stop and figure out the direction we actually want to go. So, as the first step, let's brain dump everything you'd like to accomplish, every wild idea of where you'd like life to take you, and everything that drives you. This might take awhile, but that's okay. Throughout this process try not to judge anything you write down as good or bad, possible or impossible; Just get it all out in one place.

If your mind is anything like mine, the results of that brain dump are an exciting type of chaos: overwhelming, but filled with opportunity! It can feel like a relief to get all of these things out of your head, and this is why brain dumps can be a good stress management tool in their own right… but as far as our goals are concerned, we're not done yet.

For the next step, take a look at that brain dump in all of it's chaotic glory. Still without judgment, sort the items from the most short of short-term to the longest of long-term or from the most actionable to most aspirational.

Exactly how you do this is up to you. This could involve coloured highlighters, sticky notes, cue cards, or a bunch of other methods. The method of sorting your items is less important than seeing the difference between items you can do right now and ones that require multiple actions or routines over a long period of time.

In the end, the result might look something like this, but with WAY more items:

Towards the one end, you should have the most actionable steps: clear, defined, and doable in the short-term. Way on the other end should be those pie-in-the-sky dreams; the moonshot projects filled with vague, but exhilarating opportunity. And in the middle you should have items that feel feasible, but require repeated action.

Now, sorting isn't easy. There's always going to be a few things you won't know what to do with. That's alright. It doesn't need to be perfect, just do your best, especially because we're going to bring the chaos back in just a second! Remember: this is a living, breathing process that you can come back to later, and if you miss things this time around you may catch them again next time.

So, next step: Let's play connections. Let's connect items that go together or feed into the same result. This can be any combination of the different categories, so don't hold back.

By connecting actions, goals, and aspirations that go together, you've basically created groups. Each of these groups is going to be a tree in your forest. The longest-term, most aspirational items are going to be at the top of the tree and the shortest-term, most actionable steps are going to be your roots. Each of your trees is going to look different at this point. Some might have a large, rich canopy but small trunk or root system. Others may have broad, deep roots and a sturdy trunk without much foliage at all. There is no way your trees or forest are "meant" to look. There is no right number or size or complexity.

Remember: No judgment.

At this point, some of your trees might have missing pieces, like the example above. These missing parts might be consistent across trees if you, like me, are good at those big, aspirational dreams, but struggle with short-term actions. Or, different trees might have different needs; some might need roots while others need more canopy.

Take a moment and fill in some of these gaps: add potential steps, goals, or aspirations so that you have at least one short-, medium-, and long-term goal for every tree. If they have more, that's fine too.

While you're doing this, you might find that you're not vibing with some of the goals or aspirations. Maybe you can't figure out how to get from here to there. Maybe it's a goal that was given to you rather than one that you're growing yourself. Maybe one of your goals is giving you the ick for traumatic, self-doubt, or inaccessibility reasons.

Whatever the case, if it doesn't feel like the right time for a specific goal, or if the motivation for a goal just isn't there, it's okay to put it aside for right now. In fact, pruning those trees now or leaving them in the nursery a bit longer, to extend the metaphor beyond it's breaking point, makes it much less likely that you nope out of them later, after feeling guilty or ashamed for days, weeks, or months.

Out in the natural world, no tree is exactly like any other. Some have big rich crowns filled with fruit. Others have the biggest trunks you've ever seen. Yet others have wide, strong root networks that support entire communities. Each of your trees can be unique too. Make them memorable, special, and aesthetic for you. Take the time to add design flair, images, colours, and more to make it feel meaningful. This increases the chance you'll return to it.

Another thing that makes it more likely that you'll return to it is making it incredibly visible. Put your forest in a place you'll see it, such as a place that interrupts you or intrudes on your life when you're just going through the motions. And when you see it, revisit it! When you make progress or complete your goals, make sure that you take time to celebrate. These trees can become proof of your growth and self-improvement.

When your goals change, plant new trees, clear out the blowdowns (or goals that are no longer relevant to your life), and add new supports for undersupported trees. These aren't failures, but natural processes that make a forest strong and healthy. After all, sometimes we need seasons of pruning, planting, and harvesting.

Now, I know that goals and aspirations are hard--or at least I find it hard--so this worksheet is all about identifying, organizing, and prioritizing those in a way that feels grounded and tangible. I've included the worksheet as images above, and as a PDF below for your reference.

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In addition to getting early access to this post, folks who support me on Patreon also get access to a printable, fillable version of this worksheet that you can edit and make your own. If you aren't a patron, please consider joining for early access, exclusive content, and community.

Speaking of those great souls who help support this work, thank you to each and every one of you:

J, Emily Faalasli, Meghan Premo-Hopkins, Anne Lee Landry, & Calle Englund

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Comic by u/AceAngell on reddit

It's true though! ADHD meds are great for making the focus happen… but they aren't nearly as great at letting us choose what to actually focus on…

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If I'm not fidgeting, I'm not listening…

because the eldritch horror that lives between my ears has captured my attention trapping me in a never ending spiral of despair, self-doubt, and redundant self-recrimination…

I mean… what were you saying?

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What even is executive dysfunction?

Executive dysfunction is a core component of ADHD and often involved in autism, depression, bipolar, and OCD. It's a big barrier with widely ranging impacts, from struggles getting started to being unable to stop, from memory issues to indecision. But, what exactly is executive dysfunction?

Well, first things first, executive function isn't just one skill or ability; It is a series of skills and abilities that all intersect, interact, and play off one another. Struggles with any one of these skills could be called executive dysfunction, but usually experiencing 'executive dysfunction' means struggles with many or all of these skills, often as a barrier to doing things we want or need to do. The exact number of skills that make up executive function isn't entirely agreed upon, but for our purposes here, let's talk about four general categories:

inhibition,

attention regulation,

working memory, and

cognitive flexibility.

Inhibition

When inhibition goes wrong, the results are impulsivity.

Everyone has urges, desires, or temptations and these pop up based on environmental cues or just random chance. When they do pop up, inhibition is meant to fire up to stop us from acting rashly. That… isn't what happens for ADHD'ers (or bipolar folks in mania) a lot of the time.

For ADHD'ers, urges are faster and more frequent, and inhibition is slower to get in the way of our urges. This slowed inhibition (which is measured in milliseconds) is just long enough for us to commit to an action before inhibition kicks in. Once we're committed to action though, even if we haven't done anything yet, it's much harder to stop the ball a'rolling. This slowed inhibition directly impacts small things, like starting to talk before it's our turn, fidgeting, or agreeing to something before we've actually thought about it. But once we've started, we can develop momentum and it can lead us to much bigger impulsive moves, like impulsive buying, eating, or sex.

This slowed inhibition response impacts a lot of ADHD experiences, including ADHD flash emotions. Emotions respond to environmental cues, so we experience an impulsive emotion and then before our inhibition shuts it down, we're already in our feels.

Inhibition also tag teams us, ganging up with Working Memory dysfunction to make us more prone to forgetting things and collaborating with Attention Regulation dysfunction to wind us up neck deep in rabbit hole after rabbit hole. Speaking of which…

Attention Regulation

Getting knocked off course by distractions (or "interference") is a major issue for ADHD'ers, and attention regulation is the executive function that's gone wrong to cause that.

No matter the situation, there's always some level of distraction and attention regulation is our ability to choose which distractions we attend to. Distractions can be external, such as sights, sounds, and smells, but they can also be internal, such as thoughts, memories, emotions, or bodily needs. In fact, these internal distractions can be harder for ADHD'ers to ignore or manage, because ADHD'ers tend to experience these internal distractions more often.

For autistic folks, attention regulation is involved with sensory sensitivities. These can capture our attention, making sensory distractions harder to ignore and manage. For OCD folks, when attention regulation goes wrong, obsessions end up turning into thought loops that we can't seem to shake. While for people with ADHD, this struggle with attention regulation is obviously the reason we struggle to focus, but it also impacts how we decide which information is relevant to making a decision (i.e., decision making), to our struggles to choose what to do next (i.e., planning or task initiation), to our struggles reading and retaining information (i.e., skipping or missing words/sentences), and to how things just pop out of our heads sometimes…

Working Memory

When things pop out of our head, it is generally working memory that's going wrong.

Working memory is basically the memory specifically to hold things we're working on at this very moment. We can fill it with instructions (sensory input), information we want to store for later, or memories we already have that we need for the current thing we're working on. Things we put into working memory won't stay there forever. In fact, they only last about 30 seconds, unless we repeat them or put them in there again. This makes it really easy for things to drop out of working memory.

Things dropping out of working memory like this happens to everyone to some degree, but for ADHD'ers it's so frequent and so impactful that it can cause real havoc in our lives. If we change location, if the context shifts, if we swap devices, or if change what we're focusing on, working memory is often wiped. …and that's why ADHD'ers struggle with it so much.

Because people with ADHD shift focus, context, and topic more often, our working memory tends to get wiped more often too. Then, on top of that, ADHD'ers often have a smaller working memory to start with, because thoughts and impulses are also taking up some of those slots.

For autistic folks, working memory can be impacted as well because sensory sensitivities cause a mess. Sensory issues can overwhelm our working memory, pushing everything else out and leading us to forget what we were working on or the information we needed to work with. Because of the way sensory issues can wipe our working memory, it can be really hard for autistic people to function in sensory dense environments. Fighting this to continue to function anyways can lead to exhaustion or even shutdowns and meltdowns if we aren't careful.

Ultimately, having a fragile working memory helps to explain why we forget pieces of instructions, for example, or misplace our phone/keys. It also explains why we might struggle with people's names or faces, or even why we might have trouble creating long-term memories (because it has to pass through working memory to get there).

Finally, Cognitive Flexibility

When things go sideways, cognitive flexibility is the executive function that allows us to adapt and carry on. At its core, cognitive flexibility is essentially being able to think about things in different ways, often at the same time, and make connections.

People with ADHD tend to be extremely cognitively flexible in some ways, but extremely rigid in other ways. For example, ADHD'ers tend to be really good at creative problem solving, a skill that requires cognitive flexibility. At the same time however, black-and-white thinking, a sign of cognitive rigidity, is also really common for ADHD'ers.

For autistic folks, struggles with cognitive flexibility are incredibly common. We often struggle to adapt to unexpected changes, to take different perspectives (especially when stressed), to decode complex or ambiguous communications or social cues, or to move from one context or environment to another.

It should also be said that depression, anxiety, and OCD also impact cognitive flexibility. These mostly making it harder to think flexibly due to the emotional upheaval going on below the surface. It's harder to think flexibly when you're panicking, for example, when the world feels like it's out to get you, or if you're in the middle of an obsession spiral.

Beyond these four core executive functions, there are a couple other skills and abilities that are often included:

Task Initiation, or getting started with a task,

Self-awareness, or being aware of our thoughts, bodily sensations, and emotions, and

Planning and Prioritizing.

Since I've rambled on enough already, I won't go into these right now, but these additional executive functions can be thought of as combinations of the four categories above. For example, struggles with bodily awareness, can arise from dysfunction in attention regulation, working memory, and inhibition all at the same time.

The Takeaway

Executive functions are a bunch of different skills and abilities that interact, team up, and play off each other. Any time that any one of these goes wrong, it could be called executive dysfunction, and they can go wrong for everyone from time to time; however, for certain people, such as those of us with ADHD, autism, anxiety, OCD, or depression, executive dysfunction comes in more flavours, happens more often, and has much larger impacts on our lives when it does show up.

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This post was published first on Patreon. If you enjoy my longer work and want to give me more time to create more content like this, consider subscribing on Patreon.

If that's not something you can do at the moment, check out my blog for more long-form content

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Today seems to be an intrusive regret kind of day.

Oh boy... I was such an awkward child... adolescent... and adult >_<

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Don't you love that completely neurotypical experience of looking for something you've misplaced, and then halfway through looking for it, you forget what you're looking for, but you continue searching anyway because you're convinced that when you find it you'll remember what you were looking for?

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Zones of Regulation: An Emotional Regulation Worksheet

Emotional regulation is hard. It's especially hard when you have ADHD, BPD, autism, or other neurodivergent conditions that create executive function barriers, flash emotions, or struggles to even identify what the emotion we're feeling is in the first place.

So I made something to help:

How it Works!

Rather than having to identify the exact emotion, the goal is to figure out which Zone of emotion we're in. These Zones group emotions into larger buckets based on the type of emotion, how it feels in our body, and (most importantly) what we need when we're experiencing them.

The Zones.

Re-group.

The first Zone (Regroup) describes times when we're in distress and just need to weather the storm. These emotions can feel out of control, overwhelmingly powerful, or completely consuming, and fighting against them rarely works. Examples include meltdowns, mania, panic attacks, fury, etc.

When we're in this Zone, stabilizing and getting through is the highest priority. After all, we can't make good decisions for the short- or long-term in active crisis. This is a great time for grounding exercises (such as the 5-4-3-2-1 technique), distraction, or retreating to a (sensory-) safe place.

Stop.

The second Zone (Stop) is for times when we're feeling very heightened, threatened, or on edge. Usually this feels like having a lot (or even too much) energy and like we could spiral out of control. This can include feeling angry, panicky, scared, or extremely stressed.

The goal in this Zone is to stop and bring the energy back down again. Activities that give a productive place to burn excess energy, such as intense exercise or moshing, or require slow, deliberate actions, such as slow breathing exercises or cold exposure, are a good fit here

Watch

The next Zone (Watch) is for times that we're feeling off kilter. We might be feeling confused, stressed, nervous, lonely, slightly dissociated, or on edge. Emotions in this Zone can be sneaky, lowering our defenses or threatening to spiral towards other Zones.

Our main need in this Zone is to be cautious and defend against spirals. This might mean slowing down our interactions with people, focusing on slow and gentle movement (such as walks or tai chi), practicing opposite action, doing body scan meditation, or journalling

Slow

The fourth Zone (Slow) describes time when we just can't get moving. We might be feeling sad, bored, understimulated, sick, or dissociated; but progress, movement, and sometimes even thinking feels like it takes more effort.

In this Zone, forcing or pressuring ourselves can be a trap that only makes matters worse, so the primary goal is self-kindness. This means accepting that we're moving slowly, being distracted, or being less efficient. It also means looking for those sources of reward and joy as healthy sources of energy

Go!

The final Zone (Go!) probably needs the least explanation. This Zone is for times when we're feeling chill, calm, focused, curious, or engaged, and the goal for this Zone is to capture the moment and enjoy yourself.

Taking time to appreciate when we're in this Zone is key to future motivation! Having evidence that we've been happy and engaged (and that we will again) can help us regulate when we're in Zones we don't appreciate as much. Make notes here about things you love and cope ahead if you can!

Of course, exactly where one Zone ends and another begins is going to be different from person to person, and what each of us needs and the skills that work for us are going to different as well. So remember: These Zones aren't set in stone. Adapt them to fit you, and here's a blank version to help with that:

Like emotions themselves, there's no such thing as good or bad Zone. And there's no such thing as a normal progression from one Zone to another. The primary purpose for these Zones is make it easier to identify, talk about, and regulate our emotions, not to shame or problematize.

Remember, processing emotions is a LOT to ask while we're in the middle of feeling them. If it's helpful, print this out, and keep it visible and accessible for when you're feeling a type of way. That'll make it easier to identify and act on.

I hope this helps!

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If you have a bad case of "Out of Sight, Out of Mind," the way that a lot of ADHD'ers do, why on earth would you think this doesn't apply to your accomplishments?

If you want to make them feel real, or even just remember them really,

KEEP THEM VISIBLE.

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Let's talk about that autism registry thing...

I've seen a few posts now where people are talking about this RFK autism registry thing in very all-or-nothing ways, to the point of wondering if their life is over.

I'm not going to pull punches, it's probably going to be harmful, but your fight; our fight isn't over.

Let's talk about it

The context:

RFK has made a promise to find out the cause of increasing autism rates by September. To do this, he isn't asking experts, he wants to compile a database of autistic people and our private health records to study the issue.

RFK would like to make this database available to researchers (including researchers he hand selects) to study increasing autism rates.

I'm not going to lie. This is bad. This is bad science. This is probably going to be harmful to autistic people and community… but it's also complicated.

The complications:

Having a disease database isn't a new thing, even in the US. There are databases like this for more threatening conditions to public health, such as cancers, infectious diseases, and bio-threats already. They are used in science and public health monitoring and can be good.

In a number of countries (especially Scandinavia), public health databases like these exist, including of autistic, ADHD, trans, and other vulnerable groups. These databases can do a lot to further research with vulnerable communities…

but they can also be a massive liability.

The Difference:

The current US administration.

The current US administration has clearly and repeatedly shown they don't mind (or actively wish to) harming vulnerable communities. RFK has stated numerous times his dangerous and dangerously misinformed opinions about autistic people.

So, while public health databases can be used for good things, I don't think this one is going to be. However, it probably isn't the end times either.

The Probable Future:

More than likely this database is going to be used (first) to further disinformation about autism, including vaccine myths. Spreading disinformation about autism, especially from a government, is going to be immeasurably harmful, no doubt.

But we've been here before. We've fought mis/disinformation and we have the tools and community to do it again.

What worries people:

What worries people is what happens after. The current US administration has been shown repeatedly that they are willing to use private data that they have on citizens to harm people.

They have used data like this for ICE raids and targeted doxing already. No one can promise that this database will not be used the same way.

That said, the path between where we are now and using this proposed database for targeted harm is windy and uncertain. We are not there yet, and there are still things that we can do.

What we can do:

1) Take care of yourself.

Make sure that you are meeting your physical, mental, and sensory needs, at least to a bare minimum level, before giving too many spoons to others.

2) Build community.

You probably have autistic family members. Talk to them.

Is there an autistic-led organization in your area? Autistic-led peer support? Reach out to them. Talk to other autistic people and share resources

If there isn't autistic-led organizations in your area, can you start something? It doesn't have to be big or perfect or consistent.

Heck, even an autistic-run D&D campaign, or social group, or bowling night would build community, just so long as it gets people meeting!

Just don't leave anyone behind. Include the most vulnerable (those in group/care homes, non-speaking, etc.) among us in these communities.

3) Communicate with your physical or mental health care team.

They may not be able to amend past health records, but they can certainly change the notes they take in future.

Be careful though, as these notes are an important part of disability programs and may be necessary for those purposes.

4) Continue making noise.

Get the media involved. Be loud at people who could be involved with the database (researchers, government officials, committee members). Talk to your representatives.

5) What'd I forget?

What are other things we can do the push back in this moment?