Why are folks so scared of overdiagnosis?
Check out the collection of fidgets Team Shiny loves! Is the 'overdiagnosing' of ADHD, autism, and other neurodevelopmental conditions a 'danger,' and to whom? Isabelle and David continue taking some common myths and misperceptions, questioning who and how we gatekeep 'neurodiversity' (including the idea that maybe there really is no 'neurotypical')--and how one group's fears that these labels harm us cannot negate the fear neurospicy folks have that they will be in trouble, or judged, or stigmatized for being who they are and unmasking. Also using the power of compassion and inviting more conversations, while not jumping to cancelling anyone--because everyone gets to fart in an elevator once or twice. -----Isabelle is coming in hot. She continues to explore her reaction to a podcast episode she listened to recently, Armchair Expert with guest Suzanne O’Sullivan on overdiagnosis, which went from covering seizure disorders to ADHD and autism, especially high-masking autism, real quick. She is so frustrated that a non-expert on ADHD—someone like O’Sullivan, whose expertise is working with epilepsy and seizure disorders, has now spent so much time talking about ADHD and autism when that is not an area of expertise. David names that he thinks this is an important conversation to have, because we are validating the other perspectives. There is a medical model of disease sets us up to want to oppose or eradicate the ‘disease;’ where things like neurodevelopment conditions like ADHD and autism are not something to be ‘cured’ or ‘fixed.” David makes the comparison, its like a bunch of people sitting and talking about going to Mexico when no one has ever been there—cultural representation. For example, someone has mild amounts of anxiety throughout the day. They understand this anxiety as having ADHD. They use ADHD interventions to help them and they found a community, and it makes sense and they feel better, it works for them. And then someone comes up with a reason to say that person does not have ADHD, that this definition does not apply—why are we being so careful when it comes to gatekeeping diversity, including neurodiversity? This wonderful person that David met at a training, named Shay, asked: is there anyone that is neurotypical? We could think of the difference between traits and states. And then he thought about personal examples. He doesn’t know if there is someone "neurotypical." Would it to be less shocking that people have different neurological needs or educational differences if we recognized that there may be no 'one' baseline or group to compare everything to? And how quickly we dismiss difference--like knowing that because David listened to books, the argument that what he did was not 'reading'--but we get back to actual question, which is...what was the task, and did it get done? Often, talking about the fantasy of how ADHD looks or how its supposed to be, it's more about other people. A lot of people with ADHD believe that if its easy for them, they’re cheating. Because its supposed to be hard. Do most non-ADHD people think that way? The debates are now that anxiety, bipolar disorder, OCD—these are neurological differences—they are also looking at causal factors to all these conditions that are not chosen. So is the only person who is ‘normal’ the person who has no feelings, reactions, or responses? Someone who has no big responses to stimuli, someone who is antisocial? Isabelle does fall into the categorizing and black and white thinking, and how its a part of learning, to categorize and generalize. This is not dissimilar to how people talk about race, gender, and about culturally defined parts of experiences because we collectively make them a thing—maybe its myth making and collective storytelling. There is a gravitational pull to the idea of being neurotypical or mentally ‘well’ and then there’s good and bad. Isabelle wonders where the compassion goes? David speaks up—they have compassion. People are scared. People are scared and when we’re scared, we have a reflexive reactions. People have found safety or comfort in the label of ‘normal’ or ‘neurotypical,’ and they see difference as not good, and they’re really trying to, in their mind, help people in their messaging. Terror management theory: when you’re scared, you find a group of people who are like you and you band together to be less scared. So, there are a chunk of people out there who are getting very specific about who is in or out of the group. David can have a lot of compassion for that fear, that fear about who gets to belong. But he also wants to speak to the neurodivergent person who is doing something you tell them will help—and it hurts them? It’s a real fear we carry. David uses the example of his mom—bless her heart (see the Southern US use of this phrase on many levels below)—who grew up being told the importance of having arch support in shoes, and so when David had flat feet, she had him use these inserts—David is not blaming his mom, she did the best she could—lots of people are told not to touch things, don’t go into the light. Every neurodivergent person has to have the fear “I’m doing this wrong, I’m in trouble, I’m doing something bad!” To little David: you know, you have flat feet, you have more stability around corners—but another voice would say “don’t tell anyone you have flat feet, it’s bad.” He has compassion for the fear people have that want everyone to be the same, to not stand out or be different, and there is also a fear that neurodivergent people sit with every day about whether or not they’re allowed to act the way they act. Isabelle names that the podcasters were saying “oh, these diagnoses are an excuse to then act in ways that are socially awkward.” Ahem. Isabelle describes how this feels like when she describes her inner workings to someone in all the steps she takes when she sits down next to someone, wondering if this is the right physical distance, is she staring at their eyebrows too long, is she pausing appropriately, etc.—and when she unmasks and reveals this, the person considers it a compliment to say “I couldn’t tell.” It’s the idea that someone outside of you knows more about your experience than you do. The way that diagnoses connect to power and gatekeeping for services and Isabelle makes the point that those who are saying “over diagnosis is dangerous”—to whom? On what planet are folks who are neurospicy getting enough of the supports and services and resources and access that they need? The system is already failing most of us. David names: this isn’t cancer, this isn’t people getting chemo erroneously. There is no danger in identification, it’s about getting our needs met. What do we do as a society to neglected people, and the more you know about your needs, the less of a danger being neglected becomes. This is a question of someone who knows a lot about things wandered over into another area and made bold statements without the expertise. Isabelle was extra miffed that she also dismissed the intersections of Autism, ADHD, POTS, hyper mobile Ehlers Danlos, and MCAS and ‘nonexistent’ —so damaging and harmful. These are real things, the interconnectedness of them is being actively researched, just because you are new to the party does not make something false or untrue. As David puts it, in the 70’s or 80’s, the APA took a vote to decide if being gay was good or bad, essentially (“do we keep gayness as a disorder?” Yes folks, this was that recently. GAH.). Now imagine someone was asleep for ten years and missed that memo and is now walking around looking at pride flags wondering “why are there so man...
