Autism. AD(H)D. Dyslexia. Schizophrenia. There are more ways of thinking than people think.
Let’s talk about that.
Autism. AD(H)D. Dyslexia. Schizophrenia. There are more ways of thinking than people think.
Let’s talk about that.
I’m open to adding more neurodiverse conditions to the lede (there is a rainbow of spectrums).
I’m also happy to have a Wiki entry of terms which people might not be familiar with: like with “Neurodiverse”, “Neurodivergent”, or “Neutotypical”. “Camouflaging”. “Spectrum”. “Spoons”. That sort of thing. Also links to information, help lines, self-help, advocacy groups. (Note: I don’t know how to add a BBS Wiki.)
Other than that, I know I’m not the only neurodivergent person here, nor the only one who’s open about it. I would imagine that any talk about neurodiversity is appropriate here, whether it is informational, autobiographical, scientific, or complaining.
This post is a wiki post for maintaining a glossary of terms related to this topic
Please feel free to edit and add terms as needed
CAMOUFLAGING: see MASKING
MASKING: hiding evidence of one’s neurodiversity and copying others’ behaviors in order to seem ‘normal’ in public.
NEURODIVERGENT: adjective, of a person who is not Neurotypical.
NEUROTYPICAL: as a noun or adjective: someone who does not have autism, ADHD, or any other cognitive difference. Often contracted to “NT”. Originally coined to be the converse of “Autistic”, but in practice now means someone who doesn’t have any Neurodivergent condition.
PASSING: see MASKING. Borrowed from the LGBTI+ usage.
SPOONS: A metaphorical unit of ability to function. See Wiki for a summary of how it works. The original essay was written by Christine Miserandino, and can be found on ButYouDontLookSick.com (Wayback machine link)
Is this the “only so many spoons” concept? I heard that from a friend that suffers from EDS in the context of chronic pain
I think you have to be at least at the “Regular” level to create a wiki post. I will give it a try.
ETA: I think I made the post above into a wiki. If someone other than me can try editing it by clicking the edit button near the top right corner of that post that would be great - I see that I can)
Yes, there’s a button there that brings up the regular editing window.
And I have added the first term…worked great, thanks!
Would you look at that? Apparently there’s a ‘Wiki Editor’ badge, which I have now earned!
Great success!
So… who here found out why they “never quite fit in” when their kids or nieces / nephews or cousins got diagnosed?
[puts hand up].
What was that like?
I had no idea ADHD could be a quiet thing, where you disappear into your own world for hours. I thought ADHD couldn’t apply to me because I had so little reckless behaviour, so few broken bones. My friend Dave who broke his first bone at 5 - totally ADHD, in retrospect but we didn’t have that term in the 70s. He was just an unusually busy and active kid back then. But that didn’t seem to be me at all.
Then when my son - who reminded me of Dave - got diagnosed, I did my homework and learned about the other flavours of ADHD, and “distractible” fit so beautifully.
It’s been quite a journey for all of us.
Do you have any resources you could point me to? My ex has long been diagnosed with ADHD, but I don’t know how much she’s researched it since she was diagnosed as a kid. Our kid was diagnosed with Autism with the understanding the diagnosis may or may not change to ADHD when he’s old enough to be evaluated for that. I, umm, haven’t liked the resources they’ve directed us to.
Can I ask what those resources were?
They tend to be very sensitive topics within the Autistic community and I didn’t want to distract from this conversation–but they’re often the largest and most obvious resources: Autism Speaks and ABA therapy. The intro literature felt odd and didn’t seem like good fit for us. So I poked around and hearing from Autistic adults they talk about traumatizing experiences and very valid criticisms. I’ve looked into recommended alternatives, was familiar with most of the glossary mentioned upthread, but hadn’t heard “flavours of ADHD” mentioned before.
The biggest problem, and hardest thing to deal with, in discussing autism/neurodiversity is what I refer to as the prime rule: If you have met one autistic child, you have met one autistic child.
There are as many autisms as there are autistic people. I am not on the spectrum myself (at least I don’t think so. My wife would probably disagree.) but I have a large population of autistic kids in my practice, as well as having an autistic child. So, yeah, some experience here. My advice is to scan a range of resources, but be aware that none of them are gospel. If you have read my cloud analogy for sexuality and sexual identity, you could very easily transport it over to this topic as well. There is no way to pigeonhole folks without damaging them. Autistic kids don’t need fixing, they need to be allowed to find who they are, they may (or may not) require more social support than most, but also have amazing strengths to be found. But there is no encyclopedic “how to be autistic” or “how to raise an autistic child” book, site or resource out there. No more than there is “how to be a woman,” “how to be Black,” or any other subpopulation that tends to get the shaft pretty regularly. Monolithic is just not a thing.
Not at all sure if that helps, but the best answer I can give is “It’s complicated.”
With the usual caveat that the combination of us, our kid, and the book worked well together and many many people aren’t so lucky, even with the same book:
I didn’t really click with online support. I had a lot to think about, and I do that with print. Not sure if that’s a neurodiversity feature or just being old (grew up reading books, was in my 20s before web browsers were invented).
Also, we did a lot of library reading too. I’ve missed something here, no doubt.
These two were good:
Autism:
The Complete Guide to Aspberger’s Syndrome, by Tony Atwood.
ADHD: (not sure if this is the one that mentioned flavours - it’s been a while)
Gawd, reading the titles again brings back the shock of having to face words like “syndrome” and “disorder”. It really isn’t all bad.
Atwood is the Bible of autism. And a very useful, if dense, book. Highly recommended as a resource. You cannot use it as a “How To” guide. It is a very good educational tool, though.
This kind of happened to us last year. We had a teacher suggest we get our kid assessed for ADHD (not because she wanted to help our child, but because the teacher was frustrated). As my wife was researching things, she noticed a lot of what she was reading seemed to apply to her.
I’ve wondered about myself on and off for a while now, mostly because of reading about the less obvious symptoms and going, “Oh. That explains things.” Similar to what happened with my life, but less structured, insomuch as I would see the occasional fact or watch a video because the title reflected something I dealt with.
It’s been a fascinating journey to learn more about things I’ve considered just a normal part of my life.
There are two communities: the Autism community (the wider group of people who are touched by autism in some way, including professionals, parents, and other such NT people who know autistic people), and the Autistic community (Actually Autistic). Autism Speaks is very definitely part of the former group, and actively resists autists having any say in what they do.
Without going into details; your intuition is correct and valid. Run very very far away from both of those things as quickly as possible.
Tony Attwood’s book is a great resource. Check out also ASAN, the Autistic Self Advocacy Network
And Spectrum News I have found to be a great round up of research and policy
Yeah, I think for us Atwood really helped address the nagging “But why?” questions, and gave context for the “how to” advice. It made the advice much easier to absorb, and we could say “oh, I see where you’re going with this.”
Our experience fit with @catsidhe 's views - we looked at what Autism Speaks and ABA therapy had to offer, and it didn’t suit us either.
We went with books, friends, a bit of online stuff, and an excellent child psychologist (we were very lucky).
Not a big fan of ABA. It is coercive by nature, although some folks, particularly those dealing with severely affected, noncommunicative kids have reported effective results. Autism Speaks has gone through some changes over the years, but my view of that organization was permanently soured by pretty regular run-ins with them in the vaccine wars back in the aughts, when they housed a very vocal antivaxxer contingent. Also, as mentioned above, they have a reputation for speaking for autistic people, rather than allowing autistic people to speak. Really not a good look. No clue what they have morphed into by now, and no real interest in finding out. They burned that bridge for me.