“Ssh. It’s early. Use Your Inside Voice. People are asleep.”
A friend of mine said this to me years ago when we were taking an early morning walk together. (For the curious, with love and light, no. She is no longer my friend.) Apparently, I was talking too loudly. I’m sure I was. I don’t always regulate my voice. It’s one of my many AuDHD traits.
What if someone was oversleeping, and the passing sound of an unhinged woman mid-conversation — with her OUTSIDE VOICE 😱😱 — startled them awake… which got them to work on time… which saved their job?
She was so concerned with saying the rudest thing gently that she forgot to do the actually kind thing — which is to take into consideration that her neurodivergent friend was probably excited and couldn’t regulate in the moment. But that would have required her to take ADHD seriously.
She’d already basically given me the “just drink chamomile tea” of unsolicited advice when she encouraged me to cure my ADHD with mindful breathing and meditation. (I do both. They are wonderful, but they do not cure ADHD because you can’t cure a neurotype.)
She took tone-policing to a new level by brain-policing.
I think about that moment a lot. Clearly.
People with ADHD/AuDHD — especially women — don’t need to be told to talk quieter, breathe slower, or “just relax.”
Anyway
My sister died last week.
I know this took a turn, but it was in the subject heading.
I think my sister was undiagnosed autistic — maybe even AuDHD.
She passed due to complications from multiple intense rounds of chemo, radiation, and experimental T-cell treatments for leukemia. Ultimately, it was brain necrosis of the frontal lobe that ended her life.
I noticed something in the doctor’s notes in her file this week. It said the kind of brain tissue damage she sustained was not survivable for anyone — but what shortened her survival period was what they described as “poor cognitive reserve” as an accelerating factor. I researched it.
Poor Cognitive Reserve
Someone with poor cognitive reserve is a person whose brain cannot compensate for damage by creating new neural pathways. There’s a lack of practice with using the brain’s ability to tap into neuroplasticity which is by definition: “the ability of the brain to form and reorganize synaptic connections, especially in response to learning or experience or following injury.”
Put simply, yes — being neurodivergent (I’m going to posit: undiagnosed and untreated, mainly) can be a factor in having poor cognitive reserve. One striking example of this, in my research-based opinion, is that if you’re undiagnosed (and therefore untreated — no therapy, no coaching, no meds, no support groups, no reading), you’ve been fighting a battle to survive in this world and your ability to cope becomes severely diminished.
She was never diagnosed. And I don’t think she had a clue there might have been autism there. But when I got my diagnosis, I saw the connection. I didn’t share it with her — she was going through enough.
I do not think that undiagnosed autism was the cause of death here. That clearly came from a rare, but documented, side effect of three intense treatments to the spinal fluid in the brain tissue.
But I do find it striking that something on the neuropsychology side was included in her case notes and yet never discussed. I even talked to the neurological oncologists and asked questions. They often looked at me like I was a freak. They were some of the most intellectually incurious people I’ve ever met.
It’s one of the many enraging things about healthcare — how my sister’s cancer was taken seriously, but her brain was not — due to strict regulations about what hospitals treat and what they don’t.
If I keep writing about it, I may launch my body into orbit from the sheer force of my angst, so I’ll just stop here.
Fuck Your “Inside” Voice
I’ve been doing this ADHD/AuDHD work for a couple of years because of my diagnosis. Reading those three words “poor cognitive reserve” reminded me how fucking important it is that we take our disability seriously even when society tells us to “whisper” or “meditate”.
FUCK THAT
We need to speak loudly and, okay, well, meditation does help but not everyone can or should. There are many ways to relax. So, I’m back to fuck that. We need to stop listening to people who do not know anything about our brains. And then after that we need to stop tolerating these people.
They are not helpers.
If people are going to remain undiagnosed, or diagnosed but stuck with a “you have ten minutes in my office every month” psychiatrist, we have to take our mental health seriously, advocate for ourselves, and share what we’ve learned.
xo, jen