I’m going to be real honest y’all. I’ve opened this document a dozen times and I’m still hesitant about what I’ve written, but here goes.
Most people know I have three ‘kids’. I use quotes because they’re all teens or adults at this point (dear gods I feel old) and all of them are amazing, talented, and in various stages of discovering who they are and who they want to be.
Let me tell you, having kids is an extremely eye opening experience. You see them struggling, lashing out, not being themselves, and you go “OK, lets see if we can get them help. They need something that I can’t give them, that the school WON’T give them until we get them into a doc. No problem.”
That hits the first roadblock on this journey. Anyone that’s tried to get into therapy can tell you that there’s a solid wait list pretty much everywhere, and this country’s pile of BS that passes for ‘health insurance’ is a scam on the best of days, and outright laughs at you when you say “Hey I’d like to get some help with my mental health”. Getting evaluated for ADHD or Autism? Those doctors don’t have the TIME to mess with billing insurance for what they do. And what they do is EXPENSIVE. Necessary, but I mean it’s a down payment on a CAR expensive, with at least a 6 month waiting list for those evaluations. So there, right at the beginning is a block for anyone that can’t scrape $3K plus together to get the testing done.
Then you get the initial paperwork for your kiddo. A packet for each parent to fill out, a packet for each teacher, and a packet for the kid themselves if they’re old enough to fill it out.
That packet, friends, is a revelation. Odds are, if you’re at the point of getting your kiddo in to get some help, that packet is going to read like a laundry list of your childhood Parent Teacher conferences:
“Bright, but can’t sit still in class”
“Understands the material, but does not demonstrate the ability to complete the assignments.”
“A joy to have in class, but always off task.”
“Tests great, but they’re VERY chatty.”
“What do you have, ants in your pants?!” (That one was my own grandmother…)
“Brilliant but does not show their work”
“Has difficulty with complex instruction” (bloody long, poorly written procedural labs, man)
“Does not self-direct well”
I could keep going. Every single “Extremely often” I marked for my elder gothling (My middle kiddo, and the one that most people ask if I had perfected cloning to have), was something that I fought hard during school. Masked like crazy during school. Gave myself migraines and the creepy crawlies to stay STILL, stay QUIET. Don’t perch. Don’t rock. Don’t pick. Don’t read out of turn. Let someone else answer. Raise your hand first.
NOW there are diagnoses for this. ADHD. Autism. Anxiety. Heck, C-PTSD at least partially from having to mask so hard.
NOW my elder gothling is getting the help they need in school, at our home, and from their doctors (mostly, that’s a discussion for another time), and I’m saving up to get the younger gothling tested.
For all that the test looks like a list of my own problems, am I going to get diagnosed formally? Probably not. With adult life comes adult responsibilities. My kids need the help more than me, there’s cars to keep running, houses to keep paid, etc. and that diagnosis fee is a HUGE roadblock. Diagnosis is a very class-driven privilege and it SUCKS.
The other thing that my gothlings and I face is the medical stigma against estrogen bearers. Testing for both ADHD and Autism were done overwhelmingly with boys, and however a person presents, if they are estrogen heavy, ADHD and Autism (usually) presents differently. Getting a diagnosis is harder. Doubly harder as I’ve got 44 years of masking to try and NOT do during an evaluation to see how neurospicy I am. At this point there’s also (even more) politics involved, which is terrifying, and makes this already dimly-lit, pothole filled road even more treacherous.
So what do you do when you’re stuck like a lot of people my age? LISTEN when the doctors suggest tools for your kids and try them for yourself. Read medical abstracts and try to find the actual papers and see if there’s a deficiency (Vitamin D and Magnesium are big ones for ADHD) that can be treated with a vitamin to help. Find creators online that are ADHD, Autistic, AuDHD, or neurospicy (most recent term for a neurodiverse brain) and LISTEN. LEARN. Deep dive. Let your hyperfixation work FOR you for once and see if you can help yourself.
If you’re fortunate enough to be able to get therapy, a lot of offices have an attached nurse practitioner or psychiatrist that can prescribe ADHD meds if tools and tricks don’t work. And before your brain weasels tell you otherwise, store bought dopamine is FINE. People with bad eyesight use glasses. People with a funky hip use a cane. Meds are a tool to use to function better in a world built NOT for your style of brain.
This is a loooong ramble to say that being a parent is a huge learning curve. Not only about being a parent, but about yourself, and as you help your kids with their neurospicy brain, you might find that a lot of the struggle you had is because you’re neurospicy too.
<3 There are a few off and on TikTok that I'm following Dr. Kojo Sarfo being one.
I love you so much. It feels like you literally picked parts of this out of my brain. The struggle for services, the process and how messed up it is and especially self diagnosis in your 40s because you finally get your kid diagnosed and realize that dogs dont have cats and HOLY SHIT you check all these boxes too! But you’re already at that point in your life where a formal diagnosis will accomplish nothing for you but the realization explains so much and helps you better understand, advocate for, and understand WHAT to advocate for with your child. A lot of things about myself, my childhood, my own mental health history and struggles made so much sense the more I learned about ASD and neurodiversity. In my day, they called me everything from EI (Emotionally Impaired) to bipolar, to intellectually impaired/disabled and i was shuffled into the Special Ed program. I often wonder if things would have been different had I been formally and accurately diagnosed earlier in life, but I made my own masking techniques and work arounds and it helps me better advocate for what my kid needs. Thank you for being their Champion and thank you for sharing your journey with them ,you’re an awesome Mama!