Advocating ADHD in a Misunderstanding World

Episode 175

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Asher and Cam stay with the being misunderstood with ADHD theme and take a big step back to look at the larger context of trying to seek understanding and support in a world quick to judge everything ADHD. Cam shares how a recent BCC investigative news story on private ADHD clinics in the UK unleashed a torrent of follow up stories – common fear-based themes that ADHD is overdiagnosed, that the medicines are not beneficial and stories that call into question the very existence of ADHD.

Seeking support personally and professionally is an ever changing obstacle course when people and organizations have such strong opinions about something they know very little about. Everything we’ve known about ADHD has been reinforced by research and advances in neuroimaging – that ADHD is cognitive in nature, that it is a neuro-developmental condition and that it is hereditary, that it impacts the executive function center of the brain and that it can have a dramatic effect on our ability to have agency and fulfillment in our lives.

Asher makes a key distinction between advocating for oneself and advocacy, where the latter is about general education to create greater systemic change and the former is about identifying specific areas of support for a specific situation. Ash also discusses the meaning of a label, and how ADHD is a starting place to create change. He also discusses the misunderstanding gap and compares the ADHD lived experience with his trans lived experience – that as a trans ally he made assumptions about what it is to be trans. No one can know your lived experience like you, so don’t let their strong feelings define your reality.

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Episode Transcript:

Ash: Hi, I’m Ash.

Cam: And I’m Cam.

Ash: And this is Translating ADHD. Quick note about our upcoming Resilience course. We’ve moved the start date back from June 13th to June 20th. Still meeting on Tuesdays at 8:30 PM Eastern, so you’ve got an additional week to apply and spots are filling up. So if you’re interested in this course, we encourage you to apply soon. For pricing, more information about the class itself and the application, visit the website and click on the group coaching tab.

So Cam, what are we talking about today?

Cam: Today we’re talking about advocacy. And so I was thinking about this last week in the context of work, right? How do you advocate for oneself? So listeners, as you recall, we’ve been talking about misunderstanding. Being misunderstood with ADHD and all that entails. In the last week or so, there’s been stuff out in the media that really reinforces the kind of world that we live in. And that before we go to advocating in the workplace, I think Ash, the opportunity is to advocate in a world that is constantly misunderstanding ADHD. A world that constantly challenges and discounts. It’s really hard, right? It’s hard to advocate for oneself when there’s a constant pushback on this.

And I’m just amazed at how, here’s something that has been proven, it’s been researched for 40 years. Seriously. They’ve seen evidence before that, but the research ramped up, basically, more than 40 years ago. And that all the science that has happened since then reinforces what our hunch was. All the imagery, all the science has reinforced several things. ADHD is real. It is a neurodevelopmental challenge, and that medication works. So we don’t talk about meds because we’re not medical experts. We talk about coaching, we talk about change, we talk about ADHD because having accurate information is really important.

Ash, what I’m referring to is, again, a story exposing private clinics in the UK and someone going undercover and how easily they got a diagnosis and that that’s the issue. It is an issue, but it’s also indicative of healthcare and for profit healthcare. And then if you have 20 minutes in your model to assess somebody, that’s not enough for ADHD. It’s much more complicated than that. But what happens in those stories is then it elicits a fear response, and it’s the same response I’ve seen for 40 years. What is it? Is it real? Is it overdiagnosed? Are the meds harmful? Are the meds harmful to our children? It’s this drumbeat again, discredits, discounts dismisses the lived experience. So today what I wanted to do is really focus on how do you advocate for yourself in this greater world that is constantly challenging our lived experience.

Ash: Cam, it’s so interesting to me that in this way, the ADHD experience and the trans experience are really similar. The media latches onto what’s going to draw clicks. They talk about children. They drum up sensationalist headlines. And so people without this lived experience, even those who are well-intentioned, that’s all they know. Even people who think, well, ADHD might be real, have this sense that there’s too much ADHD or we’re diagnosing children too young or we’re doing harm to children. I could repeat what I just said and replace ADHD with being trans.

So what I like to talk about is there’s a lived experience gap. And that’s something I understand even more so now than I did before because I have gone from the ally side of being a trans ally to realizing that I am a trans person. And my understanding of trans issues is so much deeper and more nuanced, despite the fact that I was really well educated on trans issues before realizing I was trans.

To put that another way, a person who does not have ADHD just cannot know what it’s like to live in this brain. So when a well-meaning person says something really stupid to you – like, oh, I think everyone has a little ADHD, or, oh, it’s technology, it’s the pace of our society, it’s capitalism, it’s whatever – it’s because they don’t know what it’s like to live in these brains. And the information that they’re getting is not information that is intended to inform. It’s information that is intended to sell.

Cam: Good points, great points. And this is really indicative, I think, of human behavior. We are not set up for change. We are not set up for the data that is comin’ at us as humans. And what we do when it becomes overwhelming is something called homeostasis, where it’s like we just put the proverbial hands up, like enough, I’ve had enough. So this is about change and it’s actually from some success of education and people learning that they have ADHD.

So the system in the UK is getting overwhelmed by inquiries, but the total number of individuals, especially women who are diagnosed, assessed, and diagnosed and treated for ADHD, is well below 4%, right? That’s the number that I go with in the sense of rough estimate of individuals with ADHD. I even go sort of like, again, 2 to 4%. Fairly conservative numbers. So right now the number in the UK is, I believe around 2.4%, but it’s all these new inquiries that is putting too much demand on a system that’s not built for it, so they open up these private avenues. You can’t get into the N H S, and again, here we are, two stateside individuals.

I know very little about the UK system, but I do know that again, from our side, it is so convoluted and so challenging in order to get an assessment. I’ve said it before, is that I haven’t seen misdiagnosis of ADHD. In my experience of working with individuals, I can point to one where there was an absolute misdiagnosis and someone having an adverse response to medication that sent them, because they were bipolar, into a manic buying frenzy where they went off to buy a watch and they came back with a Mercedes. That’s one example.

And the conversations I have are around, yes, there’s ADHD in the room, and is it the biggest challenge, right? We talk about this all the time, Ash, is that, yeah, ADHD is in play. Is it the thing that’s really impacting you right now? Do you need to do some other work, like relational work or doing some trauma work, something else? Is it, again, a situation at work that it’s the work, and it has nothing to do with your ADHD?

But this is where these two things can be true. That you can have anxiety, and you can have ADHD, you can have depression, you can have ADHD, you can have PTSD and you can have ADHD. So here we are again. This is in part why we do what we do, is to educate. ADHD is cognitive in nature that impacts this executive function center of the brain, that impacts specific networks around memory, time, emotional regulation, activation, motivation, sustained effort. Right. There’s a cluster.

We see a population that this is cognitive, and so we will keep doing this and continue to do this and push back on this misinformation. But today we’re gonna talk about, again, how do you advocate for yourself in the midst of this pushback, this homeostasis of, I don’t think so. As you said, everyone has it. Hey, everyone knows a little bit of it.

Ash: And, Cam, that right there presents a real challenge. Because when you bump up against that at work, let’s just say it’s your supervisor, and you decide to disclose ADHD, and that’s the response, you don’t know what’s driving that response.

Before we hit record, you and I were talking about my experience as a trans person. A person is misinformed or spouts misinformation about transgender issues. I don’t know whether that’s innocent misinformation because propaganda trickles down and even well-meaning allies will say things that aren’t true because they don’t know any better because that’s what is being given to them by the media. So I don’t know the difference between somebody who is misinformed and somebody who might think I’m a pedophile, or I’m out to recruit or harm children. In one case, a simple conversation might help bring someone around. In the other, I might be in danger.

Now bringing it back to ADHD in that same situation: Someone who is misinformed maliciously may not put you in physical danger, but it may lead to some pretty bad outcomes in terms of your ability to keep working in that job. If somebody truly doesn’t believe ADHD exists, thinks ADHD medication is pure harm, thinks ADHD people seek out speed and are speed addicts, there’s nowhere to go with that. And the issue is, we don’t know the difference. You can’t know the difference without digging in a little deeper, and digging in a little deeper with somebody could put you in danger. So what do you do?

Cam: Yeah. What do you do? And it creates this giant false signal because yeah, I mean we’re in the business of advocating around ADHD, but you have your lived experience. You might have an environment where you can share readily and be supported, and there’s empathy and compassion, or there might not be. So in this situation is how do you advocate for yourself and not have it go astray?

I remember when I first started coaching. This is early 2000, and this is when there was no such thing as coaching. The coaching was softball coach, okay. It was athletic coach. And ADHD was this new thing, and it’s like, oh yeah, there it is. And when I would tell people I was an ADHD coach, it was fascinating to watch this. It was like a social science experiment. They would either go to coaching, and put me like on a mound, pitching softballs to kids. Or their opinion on ADHD, their beliefs -well, this is what I think. Someone who has no understanding of it whatsoever.

So here’s this thing that just people have an opinion about it because there’s fear, and there’s also bias. So we’ve talked about confirmation bias. I see where fear and confirmation bias come together. People have these strong, strong opinions, even well-meaning individuals, even people inside of ADHD land.

You’ve heard me talk about ADHD land, people. So it’s not that it’s just everyone is unified and we’re singing Kumbaya inside of ADHD land. It’s strong feelings. A sense of, again, the effectiveness of meds and what exactly is ADHD. And here we are asking these questions that are just a massive distraction because it’s not helping you with your dilemma right now.

So, as we’re going in, we’re seeking acceptance and support to distinguish acceptance from support. We can have that thing where we want validation and oh, rejection sensitivity can be in play. We talked about this with one of our students. They were looking for understanding from others before they were really understanding themselves. So again, back to understand, own, translate – to understand your own experience. What is it? Where are your strength areas? Where are your specific challenges? So you can own it, right? Own it, and also recognize the limitations of the dilemma. Cuz what we can do is take it and supersize it into, yeah, I have ADHD and it’s a challenge. And what’s the point? Why try? So this is us having to do a little bit of pre-work before we start to share and be vulnerable with others.

And when you do so, to think about what am I trying to do when I would tell people about ADHD coaching. I’m like, when they’d say, again, we’re standing around the barbecue and it’s like, what do you do? You know, it’s simple. I’m a physician, or I’m an engineer, or I’m a teacher. I used to be a teacher. Right. That was easy. People were like, oh, you’re a teacher. Got it. ADHD coach. It was again this defraction thing that just, it was so fascinating to watch. So I would start saying this, Ash, would be like, I just help people with time, and if they pique their interest, then I would start to talk.

And again, as you said, it’s like you don’t know if someone is curious, misinformed, or is there some intention there that is not on the up and up, again, to challenge and discredit and discount. So finding people who are in your spheres, who really think that ADHD is something. You really think that’s going on is there a little bit of gaslighting of then to discount your own lived experience. Or they’re people who are supportive and curious to help you, then realize your value and support you around your strengths? So you can have a better day.

Ash: Cam, it’s really interesting because I saw all of the same things that you saw when I first became a coach, or even when I was an organizer. So I used to tell people I was a productivity coach because if I would say ADHD coach, I didn’t like the responses. And I, at the neighborhood barbecue, did not want to argue with someone about ADHD. It was a way of feeling it out. I will say I think that tide is shifting.

Cam: Yes, absolutely. 

Ash: Rapidly. When people ask me what I do today in whatever context, I do say that I am an ADHD coach, and people seem to, on some level, know what that means. Even if they’re not familiar with coaching on a personal level, they’ve never worked with a coach, they don’t know a lot about what coaching is. When I say I am an ADHD coach, they get it to some degree, and I think a lot of that change is generational too.

People like to knock on Gen Z for all of their labels and their individualism. I would like to say I admire that. When it comes to labels, a label is only useful if it describes your lived experience. For me, labels are things that help me figure myself out. ADHD people are not a monolith. We have this shared set of experiences at a very, very high level at the 10,000 foot view. The same, by the way, for trans people. But as you start to zoom in a little more and a little more and a little more, those experiences become highly varied.

And so the label is not the place you end. It’s the place you begin. It’s the place that helps you start to foster understanding about yourself. And in fact, the number one piece of positive feedback that we get from our listeners is just that a typical path for a listener of ours is they’ve discovered the label of ADHD and whether or not they have pursued a formal diagnosis, that label seems to fit.

And what this show does for them is it helps connect those dots. Hearing their lived experiences coming out of our mouths. Hearing they’re not alone in this, and other people think this way and struggle with the things that they struggle with, helps connect those dots. Okay, yes, this does sound like me. This does sound like my lived experience. But again, the label is a starting place, not an ending place.

Interestingly enough, and I think I talked about this way back on the podcast, I had a client whose bosses were the owners of a company, and he worked directly below them. And they were very supportive in terms of wanting to help him solve for the ADHD related challenges that he was having at work. They had never explicitly talked about ADHD. My client wasn’t sure whether or not he wanted to disclose ADHD, but he did want to talk to his bosses about some changes that he wanted to make based on the coaching work that we were doing. And because they had expressed support and invested in support in him in the past, he knew that he could have that conversation.

So in that instance, knowing they were supportive, he decided to leave the label of ADHD out of the conversation, not because it’s not helpful for him, but because it might confound the conversation that he’s trying to have. Because of the age group that these two people fell into, there would be some blanket assumptions about hyperactive little boys or whatever else they might know or think they know about ADHD.

So in that instance, he was able to get the support that he needed, and he felt okay about leaving that label out of the conversation. On the flip side, I have had clients where that’s not negotiable. They can’t leave that label behind, and they won’t leave that label behind. It’s a highly individual choice, but do know that when you bring that label in there’s just a swath of assumptions that people without this lived experience might make.

Cam: I really appreciate the direction that you just took that in, Ash, because it’s very different now than it was when I first started out. Right? I do say that I’m an ADHD coach, and the response I get is often very different. So what we’ve been doing in the circles of educating the public about ADHD have been paying off. Just this reminder of, it’s fascinating that when something happens, again, you see a sensationalized story about there’s too much ADHD, or again, the challenge of what’s happening in the UK with these private organizations, you not really doing due diligence to the process.

These are pushbacks that will always be there in the name of progress. So what Ash and I are saying is you don’t have to be the champion of ADHD in your circle. You need to do what you need to do. So it’s a matter of really reading and getting a sense of what can you bring? How can you articulate your experience?

I can’t tell you how many times I’ve had conversations with, again, how ADHD is this distraction for the person who doesn’t have the lived experience. It just takes the conversation away from where it needs to go, which is around how can I be more effective? In my job, how can I be more effective in my relationships? How can I be more effective in my day? And so when you bring in things like more frequent check-ins and feedback, and can we talk about expectations? Can we develop some agreements on what the deliverables are and what does that timeline look like? And we’re bringing in elements of it that everyone talks about. Just being productive, and you go back to productivity coaching. This is about productivity. This is about living our lives with intention. So there’s ways that you can do it. And again, it’s a matter of paying attention to your surroundings.

Stop doing what’s not working. There’s something that you’re doing that’s creating more drama and a big signal. That is just like beating your head against the door. To back off, to come back to understanding what your dilemma is and owning that to make space for yourself, to see your ADHD in the picture. How is it a challenge for you? And then translating into how can I articulate this in a way where it’s not going to generate this big pushback. Unless you want the big pushback. As you said, it’s like, you know, there are folks who are out there. We need those champions who are gonna push the agenda forward with like, yes, this is real. This is absolutely real. So have at it if you want it.

But back to just recognizing as we advocate for ourselves at work, at home, in our circles, it’s just there’s a larger thing in play here that we just want to be mindful of. That not everybody is friendly about the ADHD experience, and it’s sort of a fascinating fear response. But I’ll say this, too, is that cannot happen through fear, right? Informed change cannot happen through a fear response. We are seeing this all over the place, and again, democracies all over the world, a sort of pushback and fear response of too quickly, this is change is happening too fast, Ash.

This is why we coach, because the principles of coaching are around strength-based coaching, positive change. And so we all have fears. To acknowledge those fears and look at, okay, what is it we really want to have happen here and how can I garner support in order to have this to happen?

Ash: The work we do is helping our clients create a life that fits. And so, listeners, I’d like to leave you with this. When you think about advocating for yourself, I like to distinguish that from advocacy in terms of being an activist or being a focal member of a minority community. One is about getting what you need – the support that you need, the resources that you need, the care that you need – for you to live a life that fits or to get as close as possible to that place. The other is about educating and informing those who are misinformed about these lived experiences, and that’s the second one. You don’t owe anyone that.

And that is something that I appreciate now in a way that I didn’t before because of the hyper visibility of trans issues. Even well-meaning people who just have a lived experience gap, I don’t owe them an explanation of my experience. I don’t owe them an education on transgender issues, and right now part of my self-care is not doing that. And giving myself permission not to do that because it’s exhausting. It is exhausting. And I am grateful that there are so many people doing that great work. That’s not the work for me right now.

So when you think about advocating for self, separate that from activism. Advocating for self is about getting what you need, and sometimes that’s not necessarily going to mean that the people on the other side of that advocacy understand you or ADHD any better than they did before. And that’s okay because you alone cannot educate every person in your life that doesn’t have this lived experience about this lived experience. And if you try, you’re gonna burn out. You’re gonna burn out. Even the people I know who do a lot of advocacy work have ways of setting boundaries to protect themselves and protect their bandwidth there.

So, Cam, let’s wrap up here for today. And listeners, if you like what we’re doing here on the show, what you can do for us this week is share us with somebody else. So until next week, I’m Ash, and this is the Translating ADHD podcast. Thanks for listening.

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