The Misdiagnosis Scenario I Worry About

The following is a repost of a Twitter thread from Sept. 5/6 about how important it is when diagnosing mental illnesses to look for and rule out neurodivergence as a factor.

My observation is that most of us go through a lot of inaccurate diagnoses of mental illnesses before we’re Dxed with autism. Honestly, that’s the misdiagnosis scenario we need to guard against, not accidental neurodivergence.

I’m seeing among my friends past Dx’s of Major Depression, Generalized Anxiety Disorder, and Borderline Personality Disorder when it turned out they were #actuallyautistic or had #ADHD.

For some, that’s not damaging: some treatments for these conditions also help for managing neurodivergence. BUT… failure to note the role that a neurodivergent condition plays in behavior and outcomes can leave the patient with an incomplete recovery.

For instance…

SSRIs may help with depression that comes from not fitting in, or depression may be comorbid with ADHD or ASD. But it also may not.

SSRIs and other anxiety meds may help with anxiety due to autistic or ADHD traits or brain patterns, but they may not.

Similarly…

Behavioral therapy like DBT and other evidence based approaches may be effective with emotional dysregulation or low activation due to neurodivergence, but the simple behavior changes might not stick or might not be enough for someone with ADHD or ASD.

When I look back on the years I spent in talk therapy, taking SSRIs and benzos, and going through DBT training, I don’t regret that effort but I _know_ that time would have been better spent directly learning to understand and manage my ADHD and autism.

For me, I got a boost from taking SSRIs but the effect was limited because I couldn’t use the extra emotional power drugs gave me to understand _why_ I felt like a failure with few friends and no safety.

The WHY of mental health was concealed from me without an accurate Dx.

Same with Xanax/Klonopin. They could keep me calmer but they could not stop an autistic meltdown.

And DBT was a full of life-saving skills for regulation, but many of the lessons didn’t work for me until I adjusted them to my specific presentation of autism.

It’s easy to think that it’s safe enough to treat a neurodivergent person with neurotypical methods, because some of these methods do work for neurodivergent people.

So, doctors ask, what’s the urgency to seek a new Dx if the treatment plan is similar?

My answer: The problem is lost time.

If I’d known what my real root challenge was (autism/ADHD) I could have been working all along on understanding how my brain and body work. Instead, I was stuck in 30 years of imprecise treatments and poor self-understanding.

Taking DBT as just one example…

I learned mindfulness, communication, and emotional regulation techniques. Yay. But they would have been more effective faster if I’d known that preventing emotional dysregulation is easier if I attend to sensory irritants and volume of input (due to autism) and learn how to more gracefully exit hyperfocus (ADHD).

It’s like learning to drive in a simulator, but really I’m only going to be driving on freeways crowded w/drunks. No driving class will help if it doesn’t teach the real conditions of the road.

Because I grew up not knowing that my mind was atypical, I learned to brain without dealing with my brain’s real world.

Or like learning to cook in a perfect professional kitchen, then coming home to realize that my real cooking world is all cheap tools, bad stove burners, cats underfoot, and only packaged food from the 7-11 next door to work with.

Real conditions matter.

And so I am encouraging people around me to pursue at least self-Dx of neurodivergence _before_ they put years into SSRIs and traditional treatment. They may still want the traditional mental health menu, but if they understand the root conditions of their brain…

…and their real needs, they will waste less time and see better outcomes.

We as a culture are so scared of neurodiveregence that we don’t include it as a core part of what we diagnose and treat.

Think how many terrible outcomes could have been prevented with an accurate Dx.

Continuing this 🧵

I hope it’s clear above: I’m not a clinician or any kind of medical professional. I’m an autist with a special interest in diagnosis as a process.

Knowing that, I hope you’ll indulge me as I roll the above ideas around a little. 😁

#ActuallyAutistic #ADHD

I want to look at the thought process around diagnosing and treating emotional dysregulation, from my perspective as a patient.

It’s a symptom of major depression, gen anxiety disorder, BPD, trauma, and a lot of other mental illnesses. It’s also a symptom of ASD and of ADHD.

Emotional dysregulation can look largely the same to an observer, but the internal experience of dysregulation can be really different, with (broadly stereotyping here) autistic meltdowns feeling very different from panic attacks, which differ from ADHD temper explosions.

Triggers are different. Physical sensations are different. Contributing factors are different. To the extent that emotional dysregulation can have a “desired outcome”, those are different too.

An example. What I used to call panic attacks were more accurately autistic meltdowns. When I thought it was panic I thought it was my body/brain telling me I was afraid. Yet I failed again and again to think or breathe or exercise my way to not being afraid. Now that I know those were meltdowns, I see that of course fear-calming techniques wouldn’t help.y brain’s desired outcome wasn’t reassurance or help; it was space I needed. What I felt wasn’t fear; it was overwhelm. The better approach would have been to stim and remove as much input as I can. That’s what I do now, and my meltdowns are shorter, do less damage in my relationships, and leave me feeling pretty okay.

Knowing that someone has different neurology can have a strong impact on how you diagnose /and/ treat dysregulation.

Another difference behind emotional dysregulation that is cause-dependent? The underlying anatomy.

I’M NOT A NEUROSCIENTIST, so I’ll just say in my layperson’s understanding (from many articles full of big words I’ll struggle to spell) that brains are different depending on whether the cause is ADHD (known structural differences), autism (AFAIK less clear if it shows up structurally), or trauma (emerging evidence of trauma effects on brain structure).

If the structures are different, it suggests that treatment should be Dx-specific.

And yet my success in getting the best treatment for the emotional dysregulation that my specific brain experiences depends entirely on whether:

  • my therapist specializes in neurodivergence
  • OR
  • I have the time, privilege, access, and assertiveness to educate my therapist

And I have to say, in my experience mental health professionals who understand or have studied neurodivergence are super, super rare – especially among those who treat a broad range of mental health issues.

And that’s how I spent 30 years in therapy with excellent therapists and in excellent programs that, to a person, absolutely missed my now-that-I-know kind-of-obvious autism and ADHD.

They didn’t know to look and they didn’t know it mattered.

#ActuallyAutistic #ADHD

Originally tweeted by Agitated Spiders for Human Rights 🇺🇸🩸🦷 (@HorriblyJane) on September 6, 2022.

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