On Devon Price - take their work with a large grain of salt
Also request for Brooklyn connections, permissive parenting, personal troubadour, GPS tracker alt, maturity and growth, IEP meeting, eggs.
In this newsletter…
On music class, therapy, appreciation. Or just a private concert. (Apr 3)
Devon Price - take their work with a large grain of salt (Apr 4)
What I’m reading and watching
I wanted to share, again, Kelly Hayes' most recent newsletter but also an article she links to with an interview with Daniel Hunter, and the piece Daniel Hunter wrote last November that I found equally powerful. I find what Daniel Hunter shares to be incredibly grounded, strategic, and actionable. It's an especially good read if you're like "Why protests??? What good do they do???"
Your Dyke Daddies - Ride Free Fearless Money (our community’s anti-capitalist financial planner), and their attorney partner, talk about stuff like tariffs and class revolution. And the episodes are just 7 minutes!
If you know you have to improve your digital security because of *hand wave*, but are getting overwhelmed with all the trainings, I like this Ride Free Fearless article, which is short, asks you to think about which of 2 categories you fall into, and then just gives you like 3-4 specific steps to follow (half of which I already do and you may too!). Then it breaks down more resources into a really succinct, short list, so it’s not too overwhelming.
I’m not crying!!! You’re crying!!!! And me too. (This is the one and only link I’ve clicked on relating to Autism month):
Permissive Parenting??? Yup! We do that! (Apr 2)
Over the past few years, various parenting FB groups and social media people will say "gentle parenting is NOT permissive parenting!" and I have always laughed to myself because what we're doing is definitely permissive parenting. Which apparently is bad and not allowed.
I even screened our most recent babysitter saying "You know how people say gentle parenting isn't permissive? We're permissive".
Of course, over time I've come to learn more official words that make "permissive parenting" sound good (like Plan C). But I don't really care. I'm confident in what we do, and I know we aren't ruining A- by being permissive parents - we are responding to his needs and development.
Just now I was searching for a totally unrelated image, and saw this!! It was meant to be something negative about permissive parenting, but I LOVE it! We are low demands, and high warmth, in our family.
On music class, therapy, appreciation. Or just a private concert (Apr 3)
We’ve finally found a musician to just come over and jam. It took a while - but through going to circle singing (an intuitive, community, improv singing), I got connected to a musician who does circle singing and music classes for kids, and lots of things.
As far as I know, he’s never had experience with a non-speaking disabled kiddo. He has absolutely no background in this. And no training in music therapy.
And he comes over and just gives A- a private, improvised concert as he follows A- around the house. It’s sort of amazing. He’s A-’s personal troubadour for an hour.
Last time A- stayed on his computer the whole time, which was totally fine! This time he chose to end computer time before musician came over. He did the usual - somersaults, being dragged around the apartment, hugs and squeezes, played with his long blue bus - while the musician made up songs about how A- was on a bus (we gave him a list of favorite buses) in the house, made up songs about where the bus was going, about big hugs, about rolling, sometimes interspersing some well loved songs like wheels on the bus or a Jack Johnson song here or there.
I wanted to share a video but all or them have everyone’s face in it! I’ll have to get permission for that and do some blurring.
I think A- is enjoying it!
Devon Price - take their work with a large grain of salt (Apr 4)
I want to share a bit about Devon Price. Not because I want to be in the habit of cancelling people, but because a lot of you, like me, are new to navigating this world of autistic advocates and who to pay attention to and maybe, like me, you thought Devon Price was a great voice on autism.
I have a few friends who've loved Devon's books, so I follow them on socials. But recently they posted a take-down of the Telepathy Tapes.......
And it wasn't what it should have been: uplifting the voices of Danny With Words and Typer Tremblings who have all been really clear that only Spellers should be having this convo, for example. Instead it was simply a take-down of Facilitated Communication and RPM. Complete with the insistence on using "nonverbal". And then also telling us all to be friends with non-speakers. They even cited ASHA's denouncement as a reason why therefore FC must be totally wrong (as if American institutions epitomize truth).
(For those of you new to this world, Facilitated Communication has absolutely been used to exploit and abuse autistic people. It is also WIDELY held, by the people who use it or used to use it, to be an absolutely important way to communicate that institutions are denouncing for ridiculously ableist and white supremacist reasons. It’s very out-of-community to espouse those same anti-FC views. It also is a conflation of multiple ways to communicate that all involve spelling, but are different in their execution, since different people have different motor-sensory needs).
In Substack, they allowed comments, where they doubled down against anyone who was telling them not to attack FC / RPM. (Or to use the term “non-speaking” instead of “nonverbal”! Anyone even adjacently, occasionally, in this community just on social media, knows that nonverbal is the INCORRECT term!!).
I started asking around, and have since learned that Devon Price is known for being the opposite of the kind of autistic advocate we need. They're known for sharing their personal experience, and extrapolating it to claim they speak for all autistic people. They’re known for not centering the most marginalized, and not listening in a humble way to the experiences of non-speakers (except the couple they said they're friends with). For then speaking on behalf of all.
We should all just take what works for us from any social media advocates, and throw away the rest. But in this case they are using their platform for some active harm - they could have just chose to keep their mouth shut about topics they don't experience themselves, but instead they added fuel to the anti-spellers fire. This fire has direct harms - I know one family who’s kid is being included in mainstream school but barely, due to skepticism from the administrators that she is communicating in the “right way”. So just make sure that if you're new to Devon Price, like me, you take their writing with a grain of salt!
The ADHD Murder Mystery Hero (Apr 4)
(Warning: Daniel seemed to think this was a really eye-rolly joke).
I'm reading a "cozy murder mystery" where the main character is coded autistic. Which made me think about how many murder mystery books have autistic, or coded-autistic, main characters. Which makes sense! The ability to notice what others don't, and connect the dots on patterns others can't, makes one a perfect mystery person.
Then I was like "but that's also true of us ADHDers!". So why aren't main characters ADHDers??
But then I answered my own question...
It would be full of "OH CRAP! I left my phone at the scene of the crime! On the body. Now I will spend the next 2 weeks forgetting who I was going to follow-up with and not having their phone numbers anyway." And "'WOW I CANT WAIT TO SOLVE THIS MYSTERY I WILL THROW EVERY MINUTE I HAVE INTO DOING THIS...."'... one week later: "Mystery? What Mystery? Ooooh ya that one. Meh."
Oh also that final scene where everyone’s in a room and the murderer is announced? For us it would be like an hour of meandering and then being like “mic drop!” And everyone in the room being like “Uh I wasn’t following. So what now? Who did it? What is going on?”
Alternatives to GPS trackers (Apr 6)
In case others also didn’t get this parenting memo…
We ended up buying RoadID tags for A-s shoes in case he goes missing.
Background… we got one of the GPS trackers (Jiobit) but never paid to turn it on. It felt like overkill - both expense and logistics wise - given that we’re always with A- one on one. But we wanted something.
There are a bunch of tags like this for shoes for runners, but I liked RoadID even though it’s more expensive because it has this Velcro strap so it works easily with A-s Velcro shoes.
Ignore the black lines in the photo. I did that to make it harder to read our address.
First... then. And maturity and growth. (Apr 7)
Of course, we've never done the weird ABA first/then, or even the school first/then. But I don't think we've done a lot of "first brush your teeth and THEN you can get the computer" type things.
I am not sure they ever went our values, particularly, although I appreciate that they aren't the best form of parenting! I think we just intuitively knew they wouldn't work. That there wasn't the language, or maturity, for it. Daniel may have done a few things like "we're washing your hands before you eat food", but those were things *we* were doing (washing his hands for him, for example).
But lately I have been doing it a lot for things like... well exactly the example I gave. There are a few tasks that are hard to get done later in the morning, so I've started saying he has to do them first before getting the computer (which right now he basically gets as soon as he gets up). And it's working!
You may not use this form of parenting, and that's cool! But either way, the fact that A- CAN get this concept now is pretty amazing and is thing 10000 that shows his sudden growth and maturity as he gets older!
On socializing. And maturity and growth. And how often things don't have to be taught the way we think they have to be. (Apr 7)
A- is such an impressive kid!
Over the last few years, we dropped not only school but also the idea that we have to replace school with other social opportunities. We asked ourselves, what do we really mean by "he needs to socialize"? Or in Rose Green terms, we “unclumped” it. We realized what he needs is to exist in community in a respectful way. Which is different from "he must be with other kids in a gymnastics class".
So we haven’t pushed playgroups, etc, (nor have we ignored them!). He's very rarely been in settings where there's necessary direct interactions with other kids his age, except when the playgrounds are crowded.
The other day a friend and their 5 year old kid came over (second time ever doing a non-relative playdate!) and the kid brought A- his awesome long white MTA bus to play with.
Now A- may not play with the other kid in ways most 5 year olds do (he’s probably more like most 20 year olds…. just sitting there watching YouTube videos of buses while the other person does whatever they feel like doing), BUT he was happy to play with this awesome long white bus while watching YouTube videos!
When it was time for them to go, I told A- he had to give the long white bus back and he did it without hesitation!
In the past week, he’s had 2 times where another kid grabs the swing he was using, or the toy he’s playing with, and he handled both very well! He'd stare at the other kid, perhaps processing what’s happening, maybe giving them understandable death stares, while I explained to him that that happens sometimes. But that was it.
This is a kid who we ignored the recommendations to train him in "frustration tolerance", in "interacting with other kids", and here is being respectful in community. Just cuz.
And showing skills that MANY 5 year olds do not have. While other 5 year olds definitely have skills he doesn't! It's almost as if, all 5 year olds are actually very different. And that kids that age just mature and naturally gain a variety of skills. Shocking.
IEP meeting done! (Apr 7)
I really cannot talk about A- in a negative way. This is why I'd be a terrible parent advocate. I get defensive when people are talking to us about our schooling choices, and then all I can talk about is how A- IS doing really great and he's SUPER AMAZING.
Of course, it didn't matter because even with me saying how amazing he is they still gave us the same services and increased our SETSS (special education teacher) hours to what is way higher than most get, and gave us summer services too. A- is great, but even when I talk about him on his best day he's still seen as someone who needs a lot of services.
The IESP meeting was fine, and the woman was nice, but it was funny how often she gave me advice on what we should do with A-, despite her never having met him and only having talked to me for 15 minutes. She had solutions for everything from toilet training, to how to help him talk about his feelings. I smiled and nodded.
But she did love my IESP goals I drafted (although I pretended A-’s teacher and therapists wrote it so she’d take them seriously)! So that's great
A visual study of 2 neurologies…. (Apr 7)
Specimen A. The egg carton. Just examining our egg carton you can tell exactly who’s made eggs in the past few days.
Daniel insists on using eggs in order from one side of the egg carton. I insist on switching back and forth so that our egg carton is balanced in the center.
Here you see Daniel made the first 6 eggs and then I made the next 2. Panicked! Because now the carton is off balance!!
Brooklyn connections? (Apr 8)
This is a longshot but...
Does anyone know someone who could work with A- next year here in Brooklyn? Either as a SETSS (so a licensed teacher), or we're willing to get creative! Maybe this person is a para who hated the ableist system and quit. Maybe they're someone who's been a respite worker and wants to go next level.
They need to be someone with experience with non-speaking kiddos like A-, and besides that just a willingness to grow, learn, and embrace unschooling! They'd be supported by our amazing SLP, and us, so they just have to be that kind of person that goes "ooooh I get what you're saying! And here's 10 ideas of how I could incorporate that into A-'s self-directed learning!"
I really liked Unmasking Autism. I liked the story telling. I thought it was well researched and very personal. Then I followed Dr Price on Insta and was increasingly put off by some of the takes. I also found it interesting that the comments were turned off there. I believe Dr. Price has a lot to contribute but I agree that sticking to lived experience is where the strength lies. I imagine it's difficult to come up through the education system, to PhD level, and experience all of those pitfalls and try to make sense of what's wrong with it, and then try to make sense of what's wrong with the greater society, without making mistakes. I really liked Dr. Price's take on enjoying male privilege after transition. It was very enlightening. However, with age, my ability to consume content is decreasing so I find myself unfollowing. There is so much competition for our attention. Keeping my focus on lived experience has taught me the most. The weak generalizations only have a grain of truth. Take it with a grain of salt is good advice.
I enjoyed a lot of this but this is the part I feel compelled to comment on because I never ran across someone else saying it:
"I started asking around, and have since learned that Devon Price is known for being the opposite of the kind of autistic advocate we need. They're known for sharing their personal experience, and extrapolating it to claim they speak for all autistic people"
This was a bit part of why their book was really offputting to me even though everyone was raving about it. And it feels gross to side eye a book I haven't read but I couldn't finish it. I LOVED the Laziness Doesn't Exist article and probably always will, I think it was really important. The rest is a hard pass for me. I wish that book wasn't always the go to resource people point others to.