What should neurodivergent adults ask before changing medication?

The glib (or maybe extremely wise?) answer is that it feels incomplete because it IS incomplete.

Imagine you're trying to address “anxiety” with treatment-as-usual in someone who's really just overstimulated. In a case like this, you might reach for psychotherapy and/or medications and they may help, but in an ideal world you'll get to the bottom of the overstimulation and try to help someone better manage or avoid that.

Another problem is that all these frameworks can influence one another. Take food and ADHD. People with ADHD often struggle with binge eating (in fact, Vyvanse is FDA-approved for both ADHD and binge eating disorder), or sometimes forget to eat, or experience decreased appetite when they take stimulants. If you try to treat binge eating in someone with ADHD without addressing the stimming aspect of eating, or limited impulse control in ADHD, or the metabolic implications of eating too much, you might have less success than if you talked through the intersection with people.

Someone told me once that all frameworks are ultimately wrong, but some are useful. None of these frameworks—neurodivergence, physical health, mental health—is wrong in itself, and they're all useful, but none of them will usually give you a complete picture of what's going on with someone.

I usually ask people the magic pill question: If you could take a magic pill that would fix one thing, what would it be? The answer is usually telling and specific to that person's life. Something like “I'd be less frustrated with my kids” or “I'd feel less afraid to talk to my co-workers” or “I'd actually relax for once.”

Or another way to think about it: Before you ask, “Which medication should I take?” ask, “What problem are we trying to solve?”

ADHD is not a problem; missing the bus every day is a problem. Once you define the problem (or the change you're hoping for), then you can start thinking about solutions. The solution could be medication. It could also be collecting belongings the night before you usually miss the bus. If you take the time to define the problem, then it's much easier to know whether your solution—meds or otherwise—is working.

First, the tangible stuff: If you're seeing a new provider, bring a list of medications you've tried in the past and anything you can remember about what happened when you tried them. It'll help your provider get a sense of what has worked or not, and it's also required if your provider ends up needing to submit a prior authorization for something. I realize collecting a comprehensive list could be a huge and completely overwhelming undertaking, especially if the reason you're seeking help is because you're struggling to organize tasks, but you'll only have to do it once! If you remember to save it. Which, I get it.

Also bring a history of any medical problems in you or your family, any general medications or supplements you're taking, and which medical problems you've been diagnosed with in the past.

Second, a less tangible but no less important item to bring is a sense of what you feel you need help with (ask yourself the magic pill question if you're stuck). And remember, your diagnosis doesn't necessarily determine exactly which medication change makes the most sense. Let's say you have ADHD. A stimulant is often a reasonable option, but it may not be the right move if the problem you're trying to solve is feeling really anxious and unable to sleep. A very common question people come to me with is, “I'm on too many medications and I have no idea what any of them are doing.” Even that can be a good place to start.

I always try to tailor prescribing to treat as many of these potential problems as possible—for example, prescribing clonidine rather than a stimulant in someone with ADHD symptoms and hot flashes, since this can help with both—so ask if there's one medication that could address multiple problems, and whether there's a medication decrease that could help.

So, to sum up:

1. Know previous medications and supplements, medical problems, and family history.
2. Know what problem you most want fixed.
3. Ask whether a medication decrease could help with this problem, or if one medication could address two problems.
4. Ask how your provider understands the relationship between these diagnoses.

Oh geez. Don't forget inflammation while we're at it. The short answer is that any of these things can look like a mental health symptom, and any of them can change how effective medication is—or isn't. Tangible example: Iron deficiency makes people feel exhausted and inattentive, and iron is absolutely necessary for your brain to make dopamine, so if iron is low, attention is worse, AND medications might not be as effective for ADHD. If that weren't complicated enough, these can affect each other—for example, poor attention makes it harder to eat well, which can in turn make your attention even worse.

These things are complicated for everyone, but some are particularly problematic in divergent populations. There seem to be higher rates of autoimmune disorders in autistic populations, and it seems clear that perimenopause and PMDD are more severe in these populations, too. So divergence—or some aspect of it related to collagen or sensitivity or gut permeability or whatever—seems to be yet another variable that affects how these processes play out, although I don't know how well-understood the effects are.

Another example: If you really drill down into what's happening when some people have panic attacks, oftentimes they're hungry, or overstimulated, or really tired. If you just throw them a benzo or an SSRI, it can definitely help, but you might miss an opportunity to help them suffer less—for example, by helping them better manage their blood sugar, notice when they're starting to get overstimulated, or recognize that something will be overstimulating and plan ahead with some breaks and/or box breathing. The flip side of having a complicated problem with a lot of factors is that there are a lot of different levers to pull.

It's pretty much chalking any new problem up to whatever diagnosis someone already has. Tired? Probably just depression. Headaches? That pesky depression. Low appetite? Depression strikes again. But if we stop at depression or autism, we might not uncover the celiac disease that's actually driving someone's fatigue and low appetite. I think this is potentially made worse by the fact that some divergent folks are either very acutely attuned to what's happening in their bodies or have a really hard time recognizing and/or describing what they're feeling, which means they end up reporting their internal state differently than most people.

My experience working in mental health is that providers are much more likely to call something “treatment refractory” than wonder whether they've gotten the diagnosis wrong in the first place. Someone with undiagnosed celiac could be labeled with “treatment-refractory depression” because they're always tired and have a low appetite and SSRIs don't help them, but the reason the meds don't help is that no amount of Lexapro is going to make up for the fact that gluten is slowly and invisibly killing you.

So, pretty much every medication is going to have some sort of side effect. We're generally good at asking about whether symptoms improve and about major side effects—for example, is your sleep worse? Is your appetite changing? It can get hard when the side effect is vague or internalized. In other words, we're better at noticing side effects (and diagnoses, for that matter) that are problematic for other people. Some people with ADHD don't like taking stimulants because they make them feel like they're less themselves. They struggle to be as creative, or they feel like their thoughts are boxed in. This isn't a side effect you'll probably be asked about—as opposed to “Are you sleeping okay?”—but it can feel really devastating and is hard to describe in any way other than, “I just don't feel like myself.”

So to get back to your actual question, first take some time to notice how the things you love are being affected. And then just explain them as clearly as possible. If it feels like Vyvanse is making you more attuned to hunger cues, which you don't love, just say that. You don't have to interpret what's happening—just explain the tradeoff as plainly as possible and hope your prescriber will take you up on a conversation. And don't despair! Oftentimes simple fixes can help, like adjusting the dose or the timing, or taking it with food, or skipping a stimulant on the weekends.

This answer is going to be a very unsatisfying “it depends.” So first, back to the start, remember what problem you're trying to solve and try to keep track of that, at least loosely. If you're always missing the bus, keep track of whether that shifts, or whether your mornings feel less impossible.

The most worrisome potential side effects tend to vary by medication, so it's always worth asking your prescriber when and how best to reach out. Broadly speaking, new or worsening thoughts about not wanting to be around are always worth reaching out about, dramatic changes in sleep or appetite, rashes, or anything that just feels off. And please please please don't hesitate to reach out if you have a question. Few things upset me more than learning someone was suffering for a whole month with a problem or side effect I could have fixed in a flash.