Sorry, I Missed This: ADHD, AuDHD, and self-diagnosis: Is it valid?

Is ADHD self-diagnosis valid? According to clinical psychologist Dr. Elizabeth Kilmer, that’s the wrong question entirely. When access to diagnosis is limited by cost, insurance, stigma, and identity — and when the people who self-diagnose show higher rates of negative self-image and internalized stigma — the real conversation isn’t about validity. It’s about how we make sure people have access to good information.

Cate and Dr. Kilmer dig into what really happens when people research their own neurodivergence. They discuss research analyzing 452,000 Reddit posts that found self-diagnosed individuals seek more social validation. But they benefit less from it.

They cover what actually happens in a clinical ADHD assessment and how comorbidities like anxiety, depression, and OCD complicate the picture. And they discuss why the question “Is self-diagnosis valid?” misses the point when getting a formal diagnosis is a privilege that many can’t access.

• Read: Missed, misread, misdiagnosed: Current state of women with ADHD

• Listen: Is ADHD online diagnosis legit?

Cate Osborn: Hi everybody, welcome back to "Sorry I Missed This," the show where we talk about all things ADHD and its impact on relationships, intimacy, communication, and more. As always, it’s me, your host, Cate Osborn. In this episode, we’re going to talk about self-diagnosis: what it is, what it isn’t, why it has become such an important conversation in the neurodivergent community, and what does that mean in terms of understanding our ADHD and how we navigate through the world. Dr. Elizabeth Kilmer and I sit down to discuss.

Self-diagnosis is a really interesting topic for me personally because I had the sneaking suspicion that after my ADHD diagnosis, there was something else going on. There was some other thing that was impacting the way that I moved through the world. And it took me a really, really long time to even bring up the idea that I might be autistic with my medical team because I had a lot of self-consciousness and a lot of stigma around the idea of self-diagnosis.

I’d watched a lot of TikToks, I’d read a lot of books, I’d done a lot of sort of internal searching, but it still didn’t necessarily feel like I had the right or the ability to say anything. Well, it turns out that my suspicions were correct and I do in fact have the AuDHD combo platter. And so, self-diagnosis is a really interesting conversation because people tend to think about it as something very trivial.

We tend to think about it as something like, "Oh, you just watched a TikTok and you’ve suddenly decided that you have ADHD." But like we’ll talk about in this conversation with Dr. Kilmer, the conversation is a lot more nuanced and a lot more specific than just simply watching a couple videos and deciding that you have ADHD. So I’m really excited to welcome Dr. Elizabeth Kilmer back to the podcast. And without further ado, welcome to the show.

Elizabeth Kilmer: Hello! Thanks so much for having me back. It’s great to be here.

Cate: The thing that I want to talk about today is self-diagnosis and how self-diagnosis can be a help, but maybe self-diagnosis can also be a little bit of a hindrance. And it’s interesting because sometimes I think it is a really powerful and really important thing, but I also see ways where it might be harmful or it might lead someone down the wrong path.

Elizabeth: Absolutely. And I would say that your vibes are very much supported by the literature we have around like social media and ADHD and self-diagnosis. Most of the clients who are coming to me looking for assessment and diagnosis usually think that maybe they have autism or ADHD or both — in part because you’re not usually going to a provider and looking for a diagnosis unless you think there’s something going on.

And as information about ADHD and autism — and misinformation — has gotten significantly more prevalent on the internet, you have more people whose diagnoses may have been missed earlier on that are like, "Oh, this could explain why I am really struggling." Just a slight aside here, when we’re talking about self-diagnosis, I think there’s kind of two pieces here: people who may have self-diagnosed or may have suspicions and then are seeking clinical confirmation.

There are also people who have self-diagnosed and then they’re done. There’s not currently any plan to engage with services or professionals that might potentially challenge or confirm that diagnosis. When we’re talking about potential harms or even help, those are kind of two different categories.

Cate: Yeah. Well, it’s like it’s free to look up ADHD tips and tricks. If somebody identifies with the challenges and traits of ADHD and they go, "Oh, that resonates with me. I’m going to look up how people with ADHD, you know, organize their closets or remember to pay their bills on time." Like that’s free and there is zero harm. Like you’re not taking anything away from anybody, you know — like that kind of thing.

(05:01) The nuance of clinical misdiagnosis and the validity of using ADHD strategies without a formal label.

Elizabeth: You're also not getting yourself stuck in something. I like to think about diagnoses as tools to then help improve your life, help reduce kind of guilt and shame, but like help empower you, right? Like for some people, diagnoses can feel really limiting of, "Oh, I have ADHD, therefore I can’t do XY and Z" or "I’ll never be able to do XY and Z."

If that is kind of the conceptualization, I’m more worried about someone being in that self-diagnosis place. Now, being able to go like, "Oh okay, this will probably be harder for me than other people on average. Maybe I should choose an environment that is a better fit for me than that environment that’s a bad fit." Sure! But when we start to go like, "Oh well, I can’t — I shouldn’t be held accountable for my action" — right? Like there’s some certain stuff that is not as helpful.

Cate: I get a lot of journalists and they’re reaching out to me like, "Oh, we’re going to reach out to this like non-therapist on TikTok who’s making educational content around ADHD and like — gotcha!" But the thing that I always tell them is like, okay, if you go to the doctor and you’re like, "Hey, I think my arm is broken," they’re not going to be like, "Well, that’s a self-diagnosis." You know what I mean? Like it’s like, well, my hand’s hanging off of my arm, you know.

And like that’s the thing that bothers me about it because I feel like so much of the conversation just centers on this idea that people are watching like one TikTok or like reading one article. It’s so frustrating because I know that there are a lot of women especially with ADHD who get diagnosed with other issues, other disorders. Like bipolar disorder, borderline personality disorder, anxiety, depression.

As a clinician, like what do you do in those situations where somebody might come to you and be like, "Hey, I have this diagnosis of, you know, bipolar or borderline or something, but I don’t think it’s right. I think it might be ADHD"?

Elizabeth: I mean, I take them seriously. Anytime I do an assessment, we’re not just looking at "is this ADHD?" because you can’t actually determine whether or not it’s ADHD unless you determine it’s not other things also. One of the biggest potential concerns around self-diagnosis is this challenge in which like, if we are going to make sure that this diagnosis is accurate, we need to also make sure that the symptoms are not due to or better explained by another disorder.

For example, things like sleep apnea. If you have sleep apnea for a really long time, disruptions in sleep cause all sorts of problems. But they can really fundamentally change the way that you show up in the world. And that’s something where like that is a physical issue, right? And so when we think about the potential challenges with self-diagnosis, I think that like rule-in, rule-out is really important.

(10:01) The role of social media in self-diagnosis and the systemic barriers that prevent many individuals from accessing professional assessments.

Cate: It’s also really interesting too because there’s so many comorbidities that come along with ADHD. Like for me personally, getting my ADHD diagnosis was helpful, but what actually became the most important thing was also — I think you have anxiety. I think there is anxiety like around all of the executive functioning issues that come with ADHD. And so once I started treating my anxiety, that was when I saw like a lot of progress in terms of being able to navigate and support ADHD. When somebody comes to you and they’re just like, "I don't know, I don't know, I don't know, I just — look!" Like hands up in the air. What do you do in those situations?

Elizabeth: I love doing diagnosing because what I get to do is I get to gather a ton of information about a person and their whole life. And then I get to like put it all together like a puzzle. So I’m going to do a couple of different measures with you. So I’m going to have some self-report measures. I’m going to speak to somebody in your life — ideally, it’s like a parent, someone who knew you when you were a kid to get that kind of collateral information.

We’re also going to do several different diagnostic interviews that again are going to gather all of that information about symptoms that relate to ADHD, but it’s also going to look at OCD and anxiety and depression and PTSD. Those pieces really allow us to help tease out like, "Oh, is this bipolar disorder, or is this depression, or is this OCD and autism, or is it just autism?"

And so I think the measures themselves are really helpful. They’re not perfect. And especially a lot of the measures we have, especially around autism — we’re starting to see new ones. There’s a new autism screening measure that just came out that I’m so far very happy with. But that piece of like, because my job as a clinician is to differentiate and figure this out, like I also have the tools that help me do that.

Cate: We do know that there is a belonging element. There is a community element. There is an identity element that comes with diagnosis. Can you talk a little bit about how self-diagnosis can help and then — just to sort of spoiler it — the next question I’m going to ask is how can it hinder?

Elizabeth: There’s some really interesting research that analyzed 452,000 Reddit posts from r/ADHD.

Cate: I mean, that’s a good place to source your community, right?

Elizabeth: Right! I’m a big fan. I’ve done some Reddit post analysis before. It is a beautiful, wonderful, amazing tool for scientists. Obviously, you have to be mindful that your sample is like the people who are on Reddit and like that is a certain category of human — right? Like you’re not capturing people like my mom, right?

(15:01) The psychological impact of self-diagnosis and how social validation and internalized stigma play a role in the ADHD experience.

Elizabeth: They found that self-diagnosed individuals with ADHD were more likely to seek social validation — which makes sense, right? Like if this is something that I didn’t get from a doctor, then like maybe I’m going to want to have people to kind of confirm that for me — as well as seek media validation. They also were more likely to have higher levels of negative self-image and internalized stigma.

Cate: Why do you think that is? I mean, I have immediate suspicions, but —

Elizabeth: I have suspicions. Some of my suspicions are around like, if you are someone who, you know, doesn't feel comfortable or can't afford or isn't able to seek diagnosis — like maybe you’re not able to seek diagnosis because, you know, your family or you have beliefs that like ADHD isn't real or you’re never going to be able to get a job if you have an ADHD diagnosis or those kinds of things. Right? And that stigma may be very real in your community or your space.

The other piece is that they found that the effects of social validation on self-image and stigma were weaker in the self-diagnosed group. So not only are you trying to get that validation more if you are self-diagnosed, the effects of that validation are weaker.

Cate: That’s wild. So then that begets the question of like, I don't know, it gets into really spicy territory really quickly because we talk about — and like I do believe — I want to be like for the record, on record, you know, I do believe that self-diagnosis is a really valuable and really important tool for a lot of people.

Elizabeth: Especially in the world where we live, in which like there is stigma especially, especially if you are not a white man. Your likelihood of getting an ADHD diagnosis — like we’ve come a long way, right? But your likelihood of getting an ADHD diagnosis is less, right? And so especially — like the more marginalized identities you hold — A: your access to diagnosis may be less, and B: you may very reasonably have more fears that clinicians will not take you seriously.

Cate: That's so interesting though because then immediately then the other side of it is like, if I’m self-diagnosing and I’m feeling that need for validation and whatever — it’s sort of like the next step in my brain is I would then go get the diagnosis. But because so many people can’t, then like they’re sort of shoehorned into this like weird gray area of like maybe I do, maybe I don't. How does that then show up in how someone would treat that person or give support to that person?

Elizabeth: So you don’t necessarily have to have a full diagnostic assessment to get an ADHD diagnosis. Like psychiatrists can do that without, some therapists can, right? If I have a client in therapy with me and it is clear that they meet criteria for ADHD in this conversation we have, they may not need to have a full assessment. Now, I will say that the timeline for accessing that diagnosis is often going to be longer than it would be if you do an assessment because the information gathering is going to be a slower process.

Generally speaking, like if a client comes in and goes, "I think I have ADHD, it hasn’t been confirmed, but I want to come to therapy because I’m struggling with these things," we’re going to deal with the things they’re struggling with. And if it is helpful for us to assume that, "Hey, if you have ADHD, these are the kinds of things that might be more helpful, these are the kinds of things that are going on," we’re going to approach it from that framework.

Cate: I don't want to like start ranting about healthcare in our country, but there is such a lack of access. And also, self-diagnosis has started to be, I think, a little bit — there’s more of a conversation around "is it valid, is it not?" and like I don't know if I have the —

Elizabeth: I think that’s the wrong conversation. Yeah, that’s exactly what I was going to say. I think that if we lived in a perfect world where people had access to affirming and supportive and non-stigmatizing diagnosis and treatment, then we could have a conversation about like, "Oh man, should you engage in self-diagnosis or not?"

Instead, I think the conversation needs to be much more around like, how do we help people make informed decisions around self-diagnosis? If you were someone who didn't know about what ADHD was until you started watching TikTok, then it is much harder to go like, "Oh, is this meant to be a joke or is this actual information?"

Cate: The Venn diagram of like bad information that is also generalized enough that it will go viral — that’s the —

Elizabeth: See, that’s the piece too, is the information that is most likely to go viral is information that is sensationalized or it’s information that like as many people as possible can connect to. And so when you are coming across videos that are talking about ADHD with the amount of nuance that you can fit into 45 seconds, which isn’t a lot, oftentimes what you’re going to get is people are going to go, "That resonates with me." Right? And that’s fine. The problem is if people go, "That resonates with me," and then when they start looking into other information, they do get a lot of misinformation.

Cate: The ones that grind my gears the most are like, "Everybody with ADHD is psychic," like allegory to like pattern matching. That one grinds my gears a great deal. I don't — there’s a lot of them that I’ve seen.

Elizabeth: Pattern matching is actually really a good one. Like a lot of people with autism have sensory differences and — like that is part of the diagnostic criteria for autism — and not everyone who has sensory differences is autistic. Also, neurotypical people also can be overwhelmed by sensory things. It’s often just that the threshold is really different. And if they also are not sleeping or like have a newborn, which means they’re definitely not sleeping, then there are times in which like they’re going to hit that threshold much quicker.

And so I think there’s this piece too where just trying to figure out like, "Oh, is this a thing that is like a quintessential human experience? Is this a thing like, yeah, everybody forgets their keys sometimes." People with ADHD are forgetting their keys in ways in which like they have to call a locksmith on a regular basis, or they keep being late to work because of it, or they have like very specific systems so they don’t lose their keys.

Cate: That was a thing with me like when I really started sort of like learning how my brain worked. I was like, "I don't have problems with this," and then you know — like my therapist would be like, "Cool, so like why don't you?" and I’m like, "Well, you see, the 25-step Catiosaurus-approved method is how I avoid of you know —" She’s like, "Well, all right, so let’s talk about that. Let’s talk about what we mean by problems."

Elizabeth: I’m seeing more recent stuff in the literature that’s basically like, "Hey, people are going to self-diagnose. That’s not inherently a problem. But what can we do to increase the accuracy of information? What can we do to give psychologists better media training and tools to like become — maybe like they could also become influencers?" How can we kind of work with this community instead of against?

Cate: There’s also a very sort of palpable fear, I think, and not around like getting an ADHD diagnosis, but it’s almost like the opposite thing. Like I see so many people telling stories of "well, I went to go get help and they told me that I had" — you know, like in my — my very specific example — like, "Oh, you have two master’s degrees, you couldn’t possibly have ADHD" or "You can make eye contact, you couldn’t possibly be autistic." And that fear around "the only access that I have is this specific doctor in this specific area and they said no, but I really think that I do." How do you support people who are coming to you with that fear?

Elizabeth: So I have people who are coming to me with that fear. I also have people who have come to me with assessments from other providers that missed an ADHD diagnosis or an autism diagnosis. But I am really grateful for the trust that I have gotten from clients who have come in and said, "Hey, another provider told me I didn’t have ADHD but I really think that I do."

And anytime that happens, I am going to have a screening call with that person to see whether or not I think they should shell out the money for another assessment or not. It is not a perfect system. There are organizations like CHADD that are working on providing kind of education. So I think when you’re doing an assessment or you’re talking to someone, asking questions about how their approach to assessment works or what the options are — I know like we talked about this a little bit ago in terms of like what does that assessment process look like and how do you find someone who might be a good fit.

I think I would just add to that, when I went in and I got my ADHD diagnosis, it was like ADHD but also probably depression and anxiety. And then it took another couple of years of going to therapy and working through stuff for one of the therapists that I was seeing to be like, "Hey, I’m going to ask you a question, and I’d like you to answer it honestly."

And she was like, "How often a day do you sit and think about like bad things happening to people?" And I was like, "The normal amount: 14 hours." And I proceed to explain that I have like pretty significant OCD that nobody had ever caught, nobody had ever tracked. And and I think that if I had been in a place of being resistant of, "No, I just have ADHD" or like "Just this thing," I would have never realized that I had other stuff going on and I would not be as fortunate as I am to be in a place where I am able to sort of like address each of those issues both like independently and not. Because it was like treating the anxiety helped the OCD and then recognizing the OCD helped me realize how often those thoughts were contributing to my ADHD. And so it just became this like, "Oh my God, it’s all connected and it’s soup anyway!"

Elizabeth: I have never had a time in which I did an assessment with a client and I was like, "Hey, you have ADHD and also this other thing and this is how they are related" and that client went, "No I don’t." Yeah, no! There are going to be times in which that kind of diagnostic process is going to take some trial and error, it’s going to take "Hey, let’s see if we can address this thing that is very clear and present and obvious or is the easiest to address and then see how that impacts the rest of the constellation of symptoms and experiences."

Cate: Do you have any like final thoughts for people, do you have any advice?

Elizabeth: I think my final advice is that there is really good access to information about ADHD and tools and tips and tricks online. And I don't want to tell people not to go looking for them. And I would encourage — as much as I think none of us like to do this — is to do a little bit of homework on some of your favorite creators in terms of their experience or the accuracy of some of their information. Because we want to be able to have trusted voices online and in our communities. And making sure that some of those voices are the ones that are generally likely to share good and helpful information, I think makes it easier for us to continue to consume that content and feel like it is actually going to be useful.

Cate: Thank you for listening. Anything mentioned in the episode will be linked in the show notes with more resources. Have a question, comment, burning story you’d like to share? Email us at sorryimissedthis@understood.org. This show is brought to you by Understood.org. Understood.org is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, donate at understood.org/give.

"Sorry I Missed This" is produced by Jessamine Molli and edited by Jessie DiMartino. Video is produced by Calvin Knie. Our theme music was written by Justin D. Wright. Production support provided by Andrew Rector. Briana Berry is our production director. Neil Drumming is our editorial director. From Understood.org, our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson. And I’m your host, Cate Osborn. Thank you so much for listening and I’ll see you again soon. (punches microphone) Hold on. Okay. Cool. Love that for me.