Self-Diagnosis
Over the course of the pandemic, we’ve seen a large increase in the number of people seeking an ADHD diagnosis - and this increase of diagnoses is something that is only continuing a trend that we’ve been seeing all around the world. There are a lot of theories around why such an increase would be happening but one of the most likely reasons for the overall trend is that there is just a lot more knowledge about ADHD around there as well as doctors having better tools to screen for it.
And really the cultural shift around ADHD has been immense - while there is certainly still a good amount of stigma associated with ADHD, it doesn’t have the same level that it used to have. Additionally, pop culture has been slowly moving away from the harmful stereotypes of “squirrel” and how meds turn children into obedient zombies. That isn’t to say that those tropes have completely disappeared and in fact in some cases are still fairly prevalent but along with those harmful stereotypes we’re also seeing better representation now.
Along with that pop culture shift, we’re also getting to see glimpses of ADHD on social media. And these representations of ADHD are letting people who would otherwise not be exposed to these ideas start to understand a little bit more about their brains. Someone will watch a video on Tiktok and go, “wait, doesn’t everyone’s brain work that way?”
And that’s kind of the point - most of the time people don’t understand that what’s going on inside their heads may not be the same way things are going on in other people’s heads. We may know we’re struggling, but the assumption isn’t that our brain is working differently somehow. No, it’s usually the assumption that we’re lazy or that we’re a bad person somehow because we struggle to keep our dishes from piling up or putting away our laundry.
Of course, people seeking diagnoses from social media isn’t always the best thing. A recent study on the most popular videos on Tiktok under the ADHD tag found that nearly half of them contained misinformation. Now, while I’m absolutely sure that is at least partially true, I did have some issues with the study because of its constraints and definitions of misinformation. For example, there is an idea of ADHD paralysis where people find themselves unable to get up and do the things they need to do - this is not something that is documented as a symptom of ADHD in any diagnostic criteria, but if you ask me that sounds a lot like executive dysfunction... which admittedly is also not part of any ADHD diagnostic. Yet, as we went over last week, executive dysfunction is something that ADHDers absolutely suffer from. And that’s not just from me, that’s from one of the most prominent ADHD researchers, Dr. Russell Barkley, and he's definitely someone I’d consider an authority on ADHD.
Nonetheless, misinformation is absolutely out there about ADHD and it can be hard to tell the difference between that and the truth.
This is compounded by the fact that false information is able to travel 6x more quickly than the truth - people are simply more likely to share sensational claims and that leads to misinformation traveling far and wide.
This is absolutely a problem for people who are self-diagnosing because it means they might not have the best information. Who’s to say that the video you really related to was based in fact or was just some theory someone came up with on the spot.
One of the things that I absolutely agreed with the Tiktok study on was the fact that many of the videos simply didn’t have enough context. And I think that’s fair since social media relies on short form content to get it’s message across. You’re not going to have a lot of nuisance in a 60 sec video or in a single tweet. And that nuisance can be incredibly important because so many mental health conditions present in similar fashions.
One of the first things to consider about self-diagnosis is why it even exists in the first place because in an ideal world, we probably wouldn’t need to rely on self-diagnosis at all. Most people who are self-diagnosing are not doing so because they don’t want to get a formal diagnosis. The reason that self-diagnosis is popular is because it can be incredibly hard for some people to get that diagnosis and so they’re simply using the best tools at their disposal.
For some of us this might not seem like a very good reason to look at self-diagnosis - I mean when I went in to get my assessment all I had to do was call my health insurance and set up an appointment. A few forms later and after a couple of interviews, it was apparent that I fit the bill for a diagnosis. Sure, keeping appointments can be hard for those of us with ADHD, but overall it was a fairly painless experience and I don’t think from start to finish took more than a month to complete - maybe two, it’s been a while since I went in for that.
But of course, I’m white and male and I live in a place that has fairly good mental health resources. Also as I mentioned I had insurance that covered getting that assessment.
Any of those factors could have made it incredibly more difficult for me to get that diagnosis, so really self-diagnosis often comes down to an issue of equity. While it wasn’t difficult for me to get my diagnosis it isn’t always so simple and this can become even more of an issue when we get out of the United States. I get plenty of emails from people asking about how they can get diagnosed when the country they live in just doesn’t allow them to get mental health care. And even in many of the countries that do offer those services, it can take years to get that assessment. So I completely understand why some people want to (or have to) skip getting a formal diagnosis.
With this, we also want to consider what we even get out of a formal diagnosis.
One of the clearest reasons to seek out a formal diagnosis is for treatment options. Without an actual diagnosis by a trained professional, it is unlikely that you are going to be able to treat your ADHD with any kind of medication. The most common way to treat ADHD with medication is with stimulants which are controlled substances in the United States. This means that these drugs are subject to stricter government control - i.e. these are medications that are much harder to get a prescription for and that you absolutely won’t get without a diagnosis.
Since medication is hands down the most effective way to treat ADHD, that alone makes getting a formal diagnosis more desirable. Sure, a lot of people worry about side effects, but it’s equally important to consider the side effects of not treating your ADHD.
Additionally, if you want to get accommodations at your work or school you are going to need a formal diagnosis to get those. Of course with that, there is something to be said about not want to disclose your ADHD, especially in a work setting. Many accommodations are things that can be done without an actual disclosure and therefore without a formal diagnosis. For example, in many places you can easily use something like noise-canceling headphones to help reduce distractions or maybe something even as simply as keeping a water bottle at your desk to make your being reminded to drink water throughout the day.
But if you were looking to ask for something that might not be so easily provided, like getting more frequent check-ins with a supervisor so that you can be more sure to meet deadlines that might need an actual accommodation request. Now, depending on where you work that may or may not need a formal diagnosis, but according to the ADA employers are only required to provide accommodations for disabilities that they know about - but this doesn’t mean that you need to disclose this information to everyone in the company, in many cases you may be able to only disclose to HR who will guide your accommodation process.
And of course, if you are looking to get an IEP or 504 at school, you are going to need to disclose and have that formal diagnosis to get those accommodations.
But more than any of that the biggest reason to talk to a doctor is for a differential diagnosis.
But what is a differential diagnosis?
Basically, there are a lot of mental health conditions that can behave like other conditions - what this means for our assessment is that while we may go in for an ADHD diagnosis, there is the real likely hood that we may have a differing condition.
For example, let’s say that we’re having issues with inattention. In many cases this could be a result of ADHD, however, it can also be a result of depression, bipolar disorder, autism, or even if we have some kind of sleep issue.
So doe this mean inattention isn’t a symptom of ADHD? No, but it does mean that we have to trace back where that symptom is coming from. A number of episodes back I did an episode on comorbidity with depression and one of the keys there was looking at who's driving the bus, meaning that when we treat outcomes we want to know where that symptom is coming from. Because if my inattention is coming from lack of sleep then trying to use methods to help my ADHD is not going to be particularly effective.
What’s important for us to look at here is symptoms vs outcomes of symptoms. So for example, perfectionism is not a symptom of ADHD (in fact it can appear to be the opposite) - but many people with ADHD do have issues with perfectionism, and it is precisely because it is the opposite of a symptom that we develop that perfectionism. Being corrected for our lack of attention to detail as kids can lead us to over-correct in the opposite way and then develop this maladaptive behavior.
This doesn’t make perfectionism a symptom of ADHD, but it absolutely can be an outcome.
And this is true for any number of symptoms that we may be experiencing. And this outcome vs symptom can make it easy for us to misdiagnosis ourselves because we likely do not have the background to really understand all the variables that can be affecting these outcomes. What this means is that it can be incredibly useful to have a professional working with you to help figure out those root causes. When we’re in the midst of things it can be very difficult for us to determine what’s causing what because we’re just too close to the problem and we might be discounting other obvious solutions.
Nonetheless, we may still want to consider self-diagnosis, because self-diagnosis is often a stepping stone along the way to a formal diagnosis - after all, we often won’t look into an issue unless we think it’s an actual issue. With ADHD we have a lot of symptoms that many people will just construe as laziness or any number of “character defects.” Even with a formal diagnosis I still fall into this trap of believing that symptoms of my ADHD just come from me not trying hard enough or being lazy - and yes, even with everything I’ve written and said about laziness on this podcast those thoughts can still creep into my head. Self-diagnosis can help define some of those symptoms into a framework that makes more sense and make it something that you can actually do something about.
There is also the issue of what happens if you go in for a diagnosis and they don’t tell you what you want to hear. The most important thing to consider here is the reasoning for their assessment. If they tell you that you can’t have ADHD because you’re an adult and ADHD only happen in kids - well then find someone else to assess you because they clearly don’t know what they’re talking about. But if it’s because they believe you’re actually dealing with a different mental health condition then that’s probably something worth considering. If you still think they may have gotten it wrong, you could ask about co-morbidities or even consider getting a second opinion. But don’t just toss out the information because it doesn’t agree with your own biased assumptions that you went in with. Certainly doctors are not going to get it right every time but it is reasonable to at least listen to what they have to say, given that they at least seem like they know what they’re talking about.
This Episode’s Top Tips
So yeah, this is normally where the top tips would go, but I’m not sure that works as well for this episode, so I just wanted to break things down real quick here. What I’m trying to get at with this episode is that self-diagnosis tends to be an issue of equity and the fact that not everyone can easily get assessed for their mental health conditions is a problem. There is still a lot of stigma and misinformation around ADHD so getting that diagnosis can be difficult. What it comes down to though is what that diagnosis is going to do for you - if you need medication and accommodations then, yes absolutely go seek that formal diagnosis, but if you’re just looking for better ways to work with your brain, going with self-diagnosis isn’t a bad option. And to be sure if you do go the route of self-diagnosis, just be sure to be open to other options. As we went over there are a lot of ways that ADHD symptoms can show up in other mental health conditions, so just stay open and stay curious.
And at the end of the day, it doesn’t really matter what you’re diagnosed with as long as your doing those things that makes it easier for you to work with your brain.
