Episode 017: ADHD Origin Stories - How Isabelle & David Each Learned They Had ADHD
Joined by Isabelle’s husband, Bobby, who also has ADHD, Isabelle and David explore their origin stories in the first recording of Something Shiny ever (from over 3 and a half years ago). Isabelle describes how she first became more familiar with ADHD through working with David and working with clients who had the diagnosis, turning to David for help. She would then come home and tell Bobby the tips and kept telling him he had ADHD, not like it was some bad thing, but like it would only help him to know. She started noticing how sessions with her clients with ADHD had a different feel to them, and she really enjoyed them (as well as sessions with her neurotypical clients, it just had a different speed). One day, after about a year of this more focused work, she was talking to a fellow clinician who was sharing her ADHD origin story with Isabelle. She described what it was like to go into a room to get a cup of coffee, only to clean the kitchen, only to pick up three things and forget what she was doing. Isabelle started shaking and realized it was just like her. She had a flash and thought “somebody else does that?” She came to David the next day and said, “I think I have it” and he said “I know. Welcome to the tribe!” And she cried and felt so welcome and love it. She wonders how she went so long without getting diagnosed. Her mom was called into a parent teacher conference when Isabelle was in preschool, thinking she would need ESL support (English is Isabelle’s second language, her parents are Polish immigrants), and the teacher’s feedback was that Isabelle would not stop talking. She would get this feedback throughout her schooling and recognized that she was always talking and distracting other kids, but she was really lucky to have teachers who would redirect her, give her extra work, let her read and hyper focus on what she wanted to do. She then wonders how she got through Harvard, and realized retrospectively that she was prescribed Wellbutrin, which is a medication that also helps with ADHD. After weaning herself off of it, she was running around to her friends describing that she thought she had ADHD, who dismissed it as withdrawal symptoms; she accepted this explanation at the time, though she could not longer focus and magically do her work, and then went all over the place the next couple of years. After landing a corporate gig, she was able to focus on pretty boring stuff, but she had undiagnosed hypothyroidism, and any time her meds would increase to bring her thyroid to a normal level, she would again notice ADHD symptoms increase dramatically. David and Isabelle clarify how the hypothyroidism, which would normally produce lethargy, was taking away Isabelle’s impulsivity and ADHD symptoms, working like a lead vest. When Isabelle started to suspect she had it, she came home and cried and Bobby thought she had cyberchondriac’d (see definition below) herself into a diagnosis, because he saw her as focused. He had just come to terms with his ADHD and couldn’t believe his wife had it, too, because she seemed so different to him. Then she suddenly appeared to have it, very obviously, seeming much more scattered and he wonders if its because she didn’t have to fake it anymore (see Masking definition below). Isabelle notes that her and Bobby are a very small sample size, so she only has to be more focused than him to appear focused. She resonated with David describing how you can self medicate with anxiety, she noticed that she did it all the time to leave the house and make transitions. This connected to how when she realized she had it, she unmasked and suddenly didn’t want to use anxiety to help her transition anymore, making it harder for her to do things like leave the house. David then shares how he has symbol recognition disorder in 5th grade, and it was never validated that he had ADHD and was labeled as lazy or like he wasn’t trying. The struggles in school got significantly worse as he got closer to high school, and the group all agrees that no one ever says that middle school was the BEST. David wasn’t testing well, he went to a really prestigious school with all the resources, and he was never diagnosed because he was deemed ‘too smart.’ However, freshman year, he got the label of having behavior disorder, which meant school got worse, really fast. He ditched school, got a ‘screw you’ attitude, playing Mortal Kombat with all the delinquents and got kicked out of high school. He was kicked out of school because of behavior problems and sent to an alternative school, still without an ADHD diagnosis, but he had a much better time in school. He got his homework done because all homework was done in class. In his previous school, he would go home, not do his homework, and then be too ashamed to go to class the next day; he thought he was an ‘idiot’ because he didn’t do his homework. Suddenly, when he has to do homework in school, he has no attendance problems, he graduated and went to Western Michigan University. His first semester there, he goes to a doctor that diagnosis him with ADHD; he had him do a World Health Organization ADHD questionnaire (LINK HERE): gave him medicine. His life changed. Before he got medicine: a lot of fights, a lot of behavior problems, C-student, kicked out of school, would relentlessly defend people until he got into trouble. The first day he took his medicine, he didn’t have the urge to run outside immediately after class, and he thought: “this is what a normal person does.” And then, later that night, he was able to read a chapter. He used to read a line and then skip and read the wrong line, he thought it was connected to Symbol Recognition Disorder, but actually it’s an eye tracking issue linked to ADHD (see below). Suddenly he’s reading for 25+ minutes, finishing his homework and getting straight A’s. The years he went undiagnosed, felt worthless because he couldn’t read a book, wanting to die, he wanted to save people from ever feeling that way. He got involved in all of these organizations (see below for a full list) that specifically focused on mentoring kids with learning differences; he also worked with the State of Nevada to help kids with learning differences across the state. He learned from all of this that if you’ve seen one person with ADHD, you’ve seen one person with ADHD. All of these folx are different and yet they all feel like they didn’t get validated, that they are lost, forgotten, marginalized, shut out, and the only way they know how deal with it is to internalize it and make it all their fault. That’s why education about ADHD is so important, so partners, parents, everyone doesn’t think it’s it’s on purpose or someone’s fault. David recognizes that the reason we share these origin stories is because someone has to go first, someone has to model that we’re supposed to make mistakes, we’re supposed to ask for help, we’re not supposed to have the answer and we only learn in groups. And because he’s impulsive and doesn’t have a sense of the response cost (the consequences further on down the road), he wants to change the world. Isabelle and Bobby agree wholeheartedly and agree to make a podcast to try and change the world.
Organizations David mentions:
SAFE (LINK?)
PEN (LINK?)
Eye tracking issues (related to ADHD): Typical issues that can impair reading are related to either impulsively (jumping to a wrong line) or attention issues related to thinking about off topic things while reading. Click here for more.
ISABELLE’S DEFINITIONS
Hashimoto’s hypothyroidism: (source: Mayo Clinic) An autoimmune disorder caused by a person’s immune system attacking and killing the thyroid’s hormone-producing cells, usually resulting in a decline in hormone production. A common condition, especially among women, that can go undiagnosed (requires lab tests and doctor to diagnose and treat, usually with synthetic hormones), it has symptoms that can often be confused with other conditions, including:
-fatigue and sluggishness
-increased sensitivity to cold
-increased sleepiness
-dry skin
-constipation
-muscle weakness
-muscle aches, tenderness and stiffness
-joint pain and stiffness
-irregular or excessive menstrual bleeding
-depression
-problems with memory or concentration
-swelling of the thyroid (goiter)
-a puffy face
-brittle nails
-hair loss
-enlargement of the tongue
*A note: there are medical conditions that can present with symptoms of depression or anxiety if left untreated. For example, Hashimoto’s can initially produce hyperthyroidism (excessive release of thyroid hormones) and produce symptoms including anxiety, and later produce symptoms of depression. We’re not medical doctors and what you do medically is up to you; ruling out medical conditions can be an important step in addressing your mental and emotional health, too.
Cyberchondriac: (a term coined by David) a person who develops hypochondria, or belief that they are ill or affected by something they read about on WebMD or other medical information sites without any other evidence
Masking: Often used in referenced to folx with Autism Spectrum Disorder (ASD), it also applies to folx with ADHD (or both!), it’s the idea that you have to wear a neurotypical mask to be accepted or to engage in a world made for those that are neurotypical. It can be (and feel like) a matter of survival.
From a great article on the topic:
“For many neurodivergent people, masking is a survival tool for engaging in neurotypical societies and organizations. Masking (also called camouflaging) is the artificial performance of social behaviors deemed more “socially acceptable” in a neurotypical culture.”
DAVID’S DEFINITIONS:
Symbol recognition disorder:
Learning Difference (LD): Because learning disability is a crummy, inaccurate term. For example, David does not have a learning disability, he has a sitting still disability.
A note on medications: ADHD medications are very effective and also everyone gets to make their own choices about medications. For those of us folx on ADHD meds, we are often prescribed medication with zero education about how they work. Especially with kids, we don’t teach them what they need the medicine for. Medication can be used like a scalpel, where you know when to apply it; on their own, medication will not help you do your task…it will help you do whatever it is you were doing when you take the medication (eg. Playing video games, binge watching Squid Game, etc.). One idea is to take some food, start your task, then take the medication (as prescribed) to trigger hyperfocus. Please note that neither David nor Isabelle are prescribers and are talking about meds from the perspective of professionals who work with folx who have ADHD and also as folx who have ADHD. We will continue to expand upon and explore this topic in future episodes, so stay tuned!
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Cover Art by: Sol Vázquez
Technical Support by: Bobby Richards
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