Psychiatrists love to coin terms for the clout, and my least favorite website ADDitude Mag is great at circulating those terms on the internet. If it sounds official, and a bunch of doctors sign off on it, then it becomes A Thing!
The newest term du jour is Deficient Emotional Self-Regulation, or DESR, invented by one of pharma's favorite Key Opinion Leaders (and my archnemesis) Russell Barkley.
If you're unfamiliar with Barkley, he's a libertarian whose work since the 70's has focused on executive function and self-regulation in ADHD.
His twin brother died in a car accident (after a 10 hour shift and a drink) and Barkley blames “untreated ADHD” for this, dedicating his career to saving all our wayward ADHD souls (“Why don’t people with ADHD do what they know to be good for them?” he shakes his fist at the heavens).
Barkley proposes that DESR is a neurobiological issue we are born with and can do little to change (despite neuroplasticity?) and he continually suggests medication is the only option.
In response to a question of whether children need medication for DESR, he says:
"To expect to try to find some other social or psychological intervention that can change that underlying neural network problem is asking for too much of psychotherapy."
Is it? People with trauma histories that cause extreme emotional dysregulation do benefit from therapy — for instance, a 2014 study showed that 77% of people labelled Borderline did not meet the diagnostic criteria after one year of DBT. Barkley says nothing of this, instead suggesting CBT and mindfulness programs.
The thing is, CBT is a very top-down, cerebral kind of therapy, and you can’t always think yourself out of your feelings, especially when they’re physically overwhelming.
Meditation is great, but it can be painful and feel impossible when you have a lot of intense emotion and sensation in your body (especially if you’ve been bottling it up for years and ignoring it — dropping into your body like this can be too intense). It sort of feels like he's setting us up for failure here.
Stimulants, as Barkley himself admits, merely blunt emotion:
As stimulants wear off, it’s not uncommon for the emotional brain to go through a rebound. In some cases, that may look like irritability, a proneness to weepiness or crying, and sadness.
Curious to suggest the fix for emotional dysregulation is something that can actually make it worse!
As someone with the kind of intense emotions Barkley describes, I found stimulants numbing, CBT unhelpful and meditation too difficult. What’s helped me the most in processing and managing my emotions are more somatic practices like yoga, EFT tapping, and acupuncture, because they don’t require me to talk about my feelings, just to learn how to accept and process them physically.
I think somatic practitioners like Scott Lyons might disagree with Barkley's statements. Lyons was diagnosed with ADHD as a kid, and has said that, because the emotional dysregulation symptoms of ADHD mirror those of trauma responses, somatic methods like dance did wonders for his ability to self-regulate.
Contrary to the top-down methods of psychotherapy, somatic therapies take a bottom-up approach that seek to reconnect a person with their body. Lyons calls breath and movement our "first language" and somatics uses that language to ease the nervous system's chronic stress responses.
Dr. Stephen Porges, who invented the (contested) Polyvagal Theory, also notes how the effects of a chronically threatened nervous system mirror the symptoms of ADHD, and claims that school itself can be an unsafe environment for young children that sets them up to experience things like inattention and hyperactivity in a chronic way.
To be clear, I’m not saying ADHD equals trauma, but I do think that a lot of stress responses are being roped under the disorder label and neurobiologized when they actually have social and relational causes, and this is most blatant to me in these arguments about DESR.
Barkley claims "the emotional dysregulation factor" of ADHD sets kids up for "exposure to trauma" and cites another ADDitude article that illustrates how ADDitude often talks about the link between trauma and ADHD in a way that blames biology without considering what’s happened to people:
"If ADHD is an antecedent risk factor for PTSD, it could be due to a neurological vulnerability – specifically, abnormal fear circuitry – that may predispose individuals with ADHD to develop PTSD after trauma."
This is a good example of the bio-psycho-social facade, which some have called the “bio-bio-bio model” — trauma happens, yes, but it’s just because you are biologically predisposed to it.
The authors of this article (the first of which is Joseph Biederman, who invented childhood bipolar disorder) cite their own research on this "abnormal fear circuitry" — a study in which they put 27 young people with ADHD in an fMRI scanner and looked at the parts of their brains that lit up when they were triggered to be afraid.
But the sample size: very small! Disclosures section: full of pharma companies!
Biederman is listed as receiving support from Shire, Merck, Pfizer, the Department of Defense, and the FDA, and another author disclosed that he makes money selling ADHD rating scales and has a patent pending for a stimulant abuse treatment.
Skeptical of these results: I am very!!
There is also the simple fact that seeing which parts of a brain light up during an experiment doesn't really tell you very much about a person’s experience.
It's extremely reductive — the brain is interconnected, different parts can be specialized for different things in different contexts and different people, and fMRI scanners are crude tools when you consider the vast complexity of the brain.
As Cordelia Fine explains in her book that critiques gendered neuroscience:
"..Functional imaging technology averages over a few seconds the activity of literally millions of neurons that can fire up to a hundred impulses a second."
What brain scans are good for, though, is something bioethicists have called neurorealism — the observed effect that brain imaging has on making a claim seem more true.
Research has shown that throwing a brain scan into a dataset actually makes people less able to spot circular reasoning. Brain scans and neuroscience explanations make arguments seem more valid, even if they’re not.
Confusingly, while trying to differentiate ADHD from PTSD, and claim that ADHD biologically predisposes people to PTSD, the ADDitude article says that:
"Individuals with ADHD appear to have dysfunctional activation of the same brain structures implicated in fear, which is also true for individuals with PTSD"
and
"Deficits in attention and prefrontal cortical function resembling those in ADHD brains have been identified in people with PTSD as well."
Let’s clarify: you're seeing the same "dysfunctional activation" and "deficits" in the brains of people diagnosed ADHD and in those diagnosed PTSD.
How can you then claim this similarity points to two distinctly different disorders, with ADHD being inherited and present from birth and PTSD being developed in response to trauma, or claim with certainty that one causes the other?
You don't know what happened to that person, or why their brain developed that way, and you also can't study infants in any kind of controlled setting to see if that “abnormal” circuitry was present at birth, because it's unethical. Sounds like a lot of conjecture based on the brain scans of 27 people and a handful of pharma’s favorite Key Opinion Leaders.
Why is there no consideration of how a kid labelled ADHD, who is criticized and ostracized because of their deviant disposition, would be more likely to develop emotional dysregulation because of the things that happened to them?
Don’t you think this claim about my structural inability to grow and change might possibly make me feel even more hopeless and fatalistic about myself in the long run?
How does being told that my brain has permanently abnormal fear circuitry help me live a better life, beyond making me feel like I need to take psych meds forever, even if I hate them because they make me feel numb and sometimes even more dysregulated?
I just have so many questions, Russell!
Oh, Russell Barkley. The man who helped me understand why people dislike libertarians.
The man waits 6 years to write an essay about his brother’s death. He begins with a somber “ I lost my brother to ADHD” (1). Poor, disabled, untreated, nearly homeless, breaking the law brother who was about to get his shit together at 56, when ADHD strikes.
Ronald Foster Barkley is also a father of three, a gifted musician, a composer, a short-stories writer, a leather craftsman, a hiker, a fisher, an animal lover, employed at the time of his passing as a chef. Two weeks before that he was working for several years as a delivery driver, and stayed a musician for hire throughout his life. Ron was in his third marriage, kicked out of the house and was court ordered into treatment for abusing drugs by the time he realised (I assume, that his brother's right about him and ADHD). Initially he agreed to a treatment but later refused to continue. (3-5)
The man who then 4 years after publishes a book (6), where he discloses medical and personal history of another adult relative, a nearly 30 year old nephew. As the man has three other siblings, he needs to clarify that it’s the dead brother’s son. ADHD made him take his own life.
Next year the man rewrites the title of his essay to “My Brother Died in a Car Crash Because of His ADHD” (2).
And now I had to sit and comb through the web just to make sure his tactic of saving us is deliberate (5). Two years ago it worked. Listened to an episode of Ologies (7) and within a month paid for my assessment.
No matter which year, what source, who asks, it's the same: "You have no control, without prescription you’re fucked. Be medicated or live 12 years less. If you don’t take your pills, your brain will kill you. Get on meds or die. By the way, how bad are your teeth? Have you lost all your friends? How poor is your credit rating? Why are you so hostile? Can you stop throwing a temper tantrum?"
Apparently, Dr. Russell Barkley believes he’s immune to any state of cognitive dissonance. But what do I want from a man who forces a mental disorder onto his dead brother because he lost an argument somewhere around 1995. Rejection sensitive much?
(1) https://web.archive.org/web/20120828010719/http://www.additudemag.com/adhd/article/9673.htm
(2) https://web.archive.org/web/20171230172643/https://www.additudemag.com/car-accidents-personal-essay-adult-adhd/
(3) https://www.legacy.com/us/obituaries/legacyremembers/ronald-barkley-obituary?id=29618054
(4) https://www.youtube.com/watch?v=lhIO-utZLI0&t=3135s
(5) https://edition.cnn.com/2018/06/06/health/adhd-medication-adult/index.html
(6) https://www.apa.org/pubs/books/When-an-Adult-You-Love-ADHD-Ch-1-Sample.pdf
(I am going to respect privacy (lol) of said relative and won't cite the first edition where he's mentioned by name)
(7)
https://static1.squarespace.com/static/5998d8226f4ca3396027aae2/t/62276aa86de1551667f0b6a7/1646750377588/Ologies+-+Attention-Deficit+Neuropsychology+Part+1.pdf
The types of topics and questions you discuss and the way you articulate them deeply resonates with me as someone who has had similar perspectives and “questions”.
You’re very skilled/talented (not sure the most fitting word, I mean to be complimentary!!) at writing and I’ve been loving seeing your articles. I saw that this seems to make you more fulfilled than posting short form content and I am very happy for you 😁