"Welcome to Herding Cats and other stories. I thought this might be a good podcast idea." - Oswin Latimer

This podcast episode explores the origins and evolution of the neurodiversity movement, reflecting on the community's history, influential figures, and the impact of social media. The hosts discuss the importance of satire in autism awareness, the significance of the 'Tone It Down Taupe' movement, and the challenges faced by the community today. They emphasize the need for genuine advocacy and support for autistic individuals, while also reminiscing about the connections and losses within the community.

Takeaways:

• The podcast aims to share stories from the neurodiversity movement.
• The hosts reflect on their personal experiences and community connections.
• There is a concern about the lack of awareness of past influential figures.
• The community has evolved through different waves of advocacy.
• Satire plays a crucial role in challenging negative perceptions of autism.
• Tone It Down Taupe serves as a counter-movement to traditional autism awareness campaigns.
• Social media has both positive and negative impacts on neurodiversity advocacy.
• The importance of amplifying autistic voices and experiences is emphasized.
• The hosts express a desire for more genuine community support.
• The conversation highlights the need for continued advocacy and awareness efforts.

Chapters:

00:00 Introduction to the Podcast and Hosts

03:02 The Genesis of the Neurodiversity Movement

05:53 Reflections on Community and Loss

09:14 The Impact of Early Influencers

11:45 Navigating Online Spaces and Resources

15:09 The Role of Satire in Autism Awareness

17:59 Tone It Down Taupe: A Counter Movement

20:53 The Evolution of Neurodiversity Advocacy

23:50 The Influence of Social Media on Awareness

27:05 Conclusion and Call to Action

This podcast is brought to you by Foundations for Divergent Minds

I don't even know how to start this.

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Right?

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I'm trying to figure out how to fake burp or whatever to get it out of the way.

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Well, I know how to do that because you see, I'm a triplet and my brother, so I do know

how to fake burp.

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The question is, can I still do it?

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Yeah.

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Uh-huh.

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Welcome to Herding Cats and other stories from the genesis of the neurodiversity movement.

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That's a story that we're not going to go there.

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They get a trigger warning of Cassiana's parents.

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Two boys, they are not identical.

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I got diagnosed early because I had a control group.

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I'm hilarious.

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Okay.

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So for you to have reference, like Cassiana was diagnosed in the eighties.

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I was diagnosed on Friday, 1986.

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that like, and you know, for brown folks, that just does not happen.

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Yeah.

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It doesn't happen.

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Brown ASAP folks.

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Yeah, for real.

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So like, I'm going to do this.

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I got this.

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Maybe.

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No, don't.

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Somebody else has to initiate.

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I can't do the initiating.

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I just can't do it.

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to, but I don't remember the name of the podcast.

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Hurting Cops.

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Hurting Cops.

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that's a really cool name.

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Okay, but the rest of it is hurting cats and other stories from the genesis of the

neurodiversity movement.

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Because I had to reference the t-shirt.

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I had to.

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Awesome.

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Love that.

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Hurting cats.

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So, Casigana has cats, so.

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You have cats.

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Okay.

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At some point, they will make a cameo.

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Shout out to our other board member, Renee, who was unable to be here because of

life-lifing.

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So, but we will try to share the love and as best as we can capture that perspective too.

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We all kind of share one mind in some ways, like different elements of one mind, all of

us.

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Yes.

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Like the orange cat and pass it around.

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I don't know that reference.

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I was thinking about- there's a thing about how orange cats all share like one brain and

they just pass it around.

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And that's why orange cats- I did not know that.

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But I'm not really a I'm not really a pet person, so I guess that makes sense.

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I was actually thinking about when we were on NJ Ace and we came out of it and Jen was

talking about how all of us are basically all this tagging onto each other, but in

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completely different styles.

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But all still the same thing.

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So yeah, that's where it took me.

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I guess I should say why we started this podcast in the first place, right?

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Yay, yay.

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Yeah.

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So, producer here has been at me before I needed to start a podcast.

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And I have thought about it for a really long time.

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And then when Steve Silberman died a few months ago, I was, I'm pretty sure Cassiana, you

saw this post, but Monica, probably didn't on my Facebook where it was like saying, isn't

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it?

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kind of weird how people are talking about Steve in the wake of his death because like the

way everyone was talking about him were was very, I don't know what word to use, but like

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it didn't seem like they were talking about a person.

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sounded like they were talking about like a legend.

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Yeah.

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Or something.

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like, I forgot that people didn't know Steve, didn't talk to Steve, didn't interact with

Steve on a basis.

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And I posted

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or I had a comment about how he was in the old Yahoo groups and asking questions as he was

researching the book.

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And Cecilia Breinbauer was saying that she didn't know that he had been involved in those

groups at that time.

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And was saying how much we really needed to talk about that in some way.

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And I'm like, you know what?

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I think that this might be

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kind of a good podcast idea where we talk about things that used to happen when all of us

were much younger.

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And talk about...

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Or idealistic.

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Yes, and when we all knew each other.

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Because the community is gigantic.

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Like, I will run into people and they've never heard of...

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any of us?

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Yeah.

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And I'm like, how do you not know any of us?

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Yeah, they never heard of us.

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They never heard of mail bags.

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They've never heard of...

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How can you have not heard of Yeah, some of them have never heard of some of the

organizations that have been around forever.

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You know.

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I can talk to people now and nobody knows that Autry existed.

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Yeah.

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Which is like...

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Sorry, that was a terrible stat, but necessary.

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It was necessary.

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I don't disagree with...

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But like the fact that nobody even knows it existed, it's like, that's like the beginning

of us.

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Yeah.

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And so, yeah, I thought that would be a good idea to talk about all of the people.

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And I thought this episode we could talk about the people that we've lost in the past five

years because of COVID.

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And Cassiana, brought up Mel or no, Marenike brought up Mel.

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I think you actually said Mel.

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just...

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think it was Marenike that said Mel, but yes.

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And the fact that people...

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Okay, it kind of blows my mind that people don't know who Mel was.

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How is that a thing?

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There's lots of people who don't know us.

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Spicepix.org was the thing.

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Like, we are never gonna have anything that great again.

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No.

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Like, yes, we can have good things again, but we are never gonna have anything like...

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That was pivotal work of community in my opinion.

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I mean, I was online the other day and someone, because Paige Lale came back on YouTube

and so the people were basically talking about how, Paige, because of you, I know so much

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about autism, or you've opened my eyes, which is good.

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I mean, I'm just glad.

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But I was realizing as I kept reading, I've been following you since 2020.

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I've been following you since this.

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I was thinking, wow, they think Paige is an elder.

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was like, that's so.

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Because of how, I guess the burnout rate, you know what I mean?

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You know, people come and go, come and go, or people's like collective attention span or

memory is so short.

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So, y'all know how like we talk about first wave, second wave, third wave, fourth wave

feminism.

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I have come to conclude that we as an autistic community go through those waves every five

to eight years.

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Yeah.

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Yeah, we do.

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feel ways about it and I'm going to be very get off my lawn.

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And in any other culture and any other community, am fairly, I don't think I even old

enough to be get off my lawn.

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Or if I am, it's like, wow, you're really precocious on the bariatrics, but I don't know.

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I'm a dinosaur.

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And I people don't really, history happened.

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Yeah.

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People don't understand these things like

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You know, it's like, makes me think about like, you know, Rebecca Coakley being, you know,

a youth advocate, you know what I mean?

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You know, in the, you know, in disability movement, you know, and then little people and

so forth.

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And then, you know, growing up and then having children, it's like, you know, and also

coming from a family, you know, that was involved in this.

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And people don't realize how multigenerational this is that, you know, like people like

you, people like Lee, you know, were in this literally as kids, you know what I mean?

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Before they went to school, you know I mean?

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You know, it actually,

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Because I'm going back to Mel because my mind is wandering back to that.

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And I don't know how many people are aware of the fact that Mel is the first autistic that

I interacted with online.

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Mel's writing was my first.

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C was on this message board for parents of autistic kids.

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and like would randomly come on and respond to things and these really long thought out

wonderful like things.

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so like that I got to interact with C back then.

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No, her.

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How do you say the H-I-R?

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C at here.

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Here, thank you, sorry.

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So yeah, like that was my first entrance and C had

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in the, you remember how on the message boards you had your signature thingy?

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On there was autistics.org.

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And so that was one of the first things I read after joining that site because I loved, I

loved what she said in every post and like I would go on daily just to see if they posted.

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So that's where I started.

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And what's funny is that

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This is probably the first time I've ever told this to anyone.

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Before I was diagnosed, this was before I was diagnosed, like the year before, and I

literally sent Laura, I think, an email saying, hey, I really like the site and all the

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information, but it's kind of hard to navigate.

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And I'm this parent of this autistic kid and I wouldn't mind helping to redesign the site

so it's easier to read.

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That is such an autistic request to make.

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Goodness gracious.

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I got no response, obviously.

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yeah.

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I love you and you probably got talked about like, you put me on this?

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No.

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I'm sure I did.

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And like years later when you were diagnosed, there's probably, that looks a lot different

now.

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Yeah.

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It was like, I couldn't navigate it.

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It was just so hard.

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It was, but like I kept on trying because like all the information was just amazing.

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It was far more amazing.

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Was it when like all the essays were just down the side?

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Yes, yes.

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Yes, it was.

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Okay.

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It was not the most aesthetic side, I will give you that.

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Yeah, it wasn't.

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It wasn't all that.

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But you know, that's when everybody was using those, I don't know, like weird kind of,

they were like,

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almost like message boards, but they were sites.

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You know what I mean?

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Like the way that they looked, I don't know.

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It's, it's weird.

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Like, then when the blog thing came out, we were all, yeah, the most came out.

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were like, we can change this.

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We can do this.

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This was like, you know, we were all like in heaven.

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I discovered mental by accident.

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So I was trying to find some stuff and I came across in my language and I think it had

been out for like two and a half years.

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And I remember watching it and I was just like captivated, like, Oh my goodness.

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Like it was just so thrilling, you know, to me.

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so, you know, I went to the, I've never known how to pronounce that.

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Was it ballast existence or whatever the blog.

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And I went to the, you know, the little thing where you could message, you know, and it

would email folks.

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I was like, Oh, you know, I just had typed this alone, probably really annoying thing

about like how amazing it was and all this kind of stuff and asking all these other nosy

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questions and.

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you know, stuff like that.

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And then, and I also said, you know, can you shave your chin?

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Because it like really bothers me.

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I want to watch your video, but it like, so now I'm thinking about you talking about

fixing the website and I'm thinking, what the freak?

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Like really?

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I just reached out to a stranger.

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I love your work, by the way, shave your chin.

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Like.

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Really the most neurotic thing ever.

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I was thinking from a sensory standpoint that I was like, you shave it.

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Now you have the little.

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little bristle that you can kind of mess with, you know what mean?

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And then I don't have to see it because it's like the color contrast was messing with me,

sensory stuff.

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But yeah, like those writings, a lot of our early luminaries like really changed my life

in so many ways, you know?

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Between that and Don't Mourn For Us, at the same time as I was reading, all these parents

explain what, because that message board was a

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horrible cacophony, all the different subtypes of autism parent that we now know of, but

all in one message board.

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So you had a floor like the AOL message boards I was on at that time.

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So you had like these ABA people and you had the Dan people and you had the floor time

people and you had, you had sunrise people on there too.

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my God.

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Like seriously.

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And it was just so many different people trying to convince you that their way was the

right way.

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And I was in Connecticut at the time, right?

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And it was like, we couldn't even find any of the stuff they were talking about.

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Like none of it existed in the Northwestern part of Connecticut.

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If we had gone to Hertford, sure, but like that was an hour and a half drive.

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Why are we going to go an hour and a half for something I'm not even convinced of?

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And so like, I was reading all of that at the same time, which is why I ended up like

landing on floor time, because it was the one that matched both what Mel was saying and

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what was on on autistics.org.

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And then after reading, don't mourn for us and all of this.

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like, yeah, this one seems a little bit more

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Like, child-centered, which is what I wanted to be with my kids anyways.

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so, ended up going down that direction because of all these influences that were happening

at the same time, not to mention the DCF crap.

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Don't Mourn for Us was, like, after being given Welcome to Beirut and stuff like that, and

like the 100-day Kit to read Don't Mourn for Us, like, literally, like...

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It made me so emotional.

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I was just, I don't know, I feel like I was drowning because I was surrounded by the words

of all of these parents.

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My first time going to a quote unquote autism support group, people were talking about how

the diagnosis was like when the terrorist planes hit the Twin Towers and people are

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weeping and all this kind of stuff, talking about how much they wish they had a normal

child or how much they hate their lives.

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And I'm just sitting here devastated.

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And so I went running.

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for the hills trying to find people who could get me.

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And so I was so fortunate.

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Y'all were out there kind of sharing your stories, kind of like literally putting your

bodies on the line for the community and for the rest of us.

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it was just like a salve.

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And so I feel like when I think about the people we've lost.

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I just so encouraged, like it feels like a lot of things have been brought full circle.

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you know, these are, you know what I mean, folks who believe so deeply in the vision and

use their platform to say, I've got the privilege to get people to listen to me about what

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you all are saying and what's going on and what needs to be known.

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And I'm going to amplify your voices.

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Go ahead and shout, you know?

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I think that what makes me sad about nowadays is that I don't feel like, I don't feel like

a lot of people are trying to do it.

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for the community anymore.

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I don't think so either.

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It's for themselves.

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I was.

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It is absolutely for themselves and for like social media.

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Did I ever tell y'all how I found Autistic.org?

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How?

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No, I want to hear this.

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Yeah, you do.

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So, okay.

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I was diagnosed very, very young.

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And I had early intervention and I was declared indistinguishable from peers, which means

you can go to regular.

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That's all that it means.

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And that was just not actually that high of bar.

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was not because we went, it's not a high bar, especially when a kid is hyperlux.

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Which is the word my mother was willing to do.

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He would say hyperlux it cause that sounds good.

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Right.

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Well, okay.

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I babysat when I was 16 for an autistic kid and.

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It was like immediately my best.

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Okay this kid loves me immediately and so that's like that raises questions and The word

hyperlexia started raising questions after this child decided we were besties, right?

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Okay, so at the school computer lab I looked up hyperlexia for the first.

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we did not have high-speed internet at home because

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I was born in 1982.

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some math.

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High speed internet at home wasn't necessarily a thing.

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The few things on hyperlexia are like autism.

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And I'm like, okay, neat.

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So I asked Thieves about autism.

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And because SEO wasn't existing yet, one of the first things that popped up when you asked

Thieves was autistics.org.

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That's awesome.

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That is so awesome.

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So instead of getting all of this doom and gloom and this isn't me, I was just thinking

like, Yeah.

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wow.

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Wow.

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This is resonating real hard, actually.

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Wow.

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This is fine.

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And the computer lab monitor actually wrote me.

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You don't need to go to class right now, kid.

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You need to stay right here.

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You're not okay.

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Like you're fine, but you are not fine.

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I was just like, nope, I need you right here for reasons.

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You're not going to religion class.

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This is more important because I said so.

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That is a good, good person.

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Yeah.

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Wow.

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That's awesome.

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So that's how I found Autistics.org and also possibly how one using a kind of crummy

search engine kept me from being like an ASP super-assist.

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Goodness.

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Okay.

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Let's be real.

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I did find Wrong Planet fairly early and I did not, I did not go down that track,

obviously.

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I just wasn't feeling it when I went on it.

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So I didn't have the horrible experience that some people had.

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Like I scrolled through it.

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It just felt...

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weird to me.

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Like it felt like one of the like some of those groups where you go and everybody's trying

to like, oh, they're trying to find a date for their son, know, type of thing.

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Like one of those type of things.

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Oh my God.

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That that when I was working in D.C., I went to one of the one of those the group.

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is their name?

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The one that Samantha ran for forever.

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then anyways, this

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Guy sits down in front of me, right?

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And he is just flirting in the most awkward, uncomfortable way possible.

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And all I'm doing is like at that time had my wedding ring on and just kept on twirling

the wedding you're in a with kids, right?

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And then I started bringing up my husband and started bringing up my kids and he

continued.

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And so I'm like, I'm getting up and walking away because you can't do anything with that.

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don't.

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Like, didn't need to cause a scene.

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That would have been bad.

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But I think I admin the wrong planet.

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Not discord IRC.

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I did not do any autistic IRC.

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What was that?

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That sounds.

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I'm not kind of well, no, I didn't.

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I see.

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I just didn't do autistic guys.

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I'm specifically that kind of the autistic IRC kind of nerd, but not Ron Flannet was, I

think, only one I did.

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I think what I don't like.

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What I didn't like about Wrong Planet is the things that I would witness at conferences

after when Alex was around and the people that like swarmed him and the things that they

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would say and they would just say it out loud.

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And it's like...

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I love how this was one thing.

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Go ahead, sorry.

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And like, there was a point, but was this...

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It was still when I was at ASN.

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It was the last conference I went to and like this one, Asie Supremacist, and I don't even

know his name, like, but we would walk, because Alex and me and somebody else that was

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part of that group of people back then were walking to a restaurant and this dude started

saying how it would be okay if a low functioning autistic, quote unquote, wanted to have a

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cure.

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not that conversation.

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And I blew my lid on the sidewalk and like, no, we are not doing this right now.

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We are not having this discussion.

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You're not going to say that about people.

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And like, because you can't let them do that.

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And I think that's one of the things that a lot of people nowadays just don't even bother

snapping back.

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And I'm like, no, they need to be snapped back at.

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They think that they're okay because they don't get snapped back at.

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And I mean, concept of low functioning is I reject the entire process.

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Sorry.

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But like, I love how we're like, we're going to talk about this one thing.

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It's like, no, we're not.

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We're talking about autistic history right now.

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Maybe next time we'll talk about that other thing.

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That's also important.

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That's fine.

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The whole thing is going to be autistic history.

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So like...

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I mean, yeah.

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This whole point.

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We're gonna...

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Hyperfixations are gonna go.

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They are, and somebody's gonna say something...

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And then they'll go where they go.

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And someone's gonna say something and we're all gonna have like a different mind trigger

moment thing.

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Not trigger as in bad, but like...

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It's just gonna hit something and we're like, yeah, it's gonna go that direction, right?

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Okay.

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So we're going to go where we're Yeah.

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So speaking of going, I have a place I want to go.

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I want to talk about Tone It Down Taupe.

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Okay.

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Okay.

375

Yes.

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Let's give Renee some love.

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Yeah.

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So I remember the first time I went on the site and I'm looking at, like taupe, right?

379

It's like a color you don't think about.

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It's like the one in the crayon box that you never use.

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Right?

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You know what mean?

383

And so I'm on there and was like, Kazianna, I think it was you and Renee were like talking

about taupe and how like,

384

neutral and laid back it is and how like instead of people freaking out and you know

lighting it up blue why don't you calm down and tone it down and like even the tone of

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voice was like all the shoes and like sleepy and like and like the font was like lazy like

you know like it was just everything was like calm the frick down already like you know

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there's like it was it was just it was so funny to me because it's like you know people

were doing you know like

387

the gold and the red and the silver, which I get all of those have purposes, it was just

such a cool twist on this urgency hit now.

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You gotta do this, you gotta make it loud and wild and panicky.

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It was such a wonderful counter movement to me.

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The only thing I think about with it is that

391

My kiddo is the only one that ended up not being autistic that we used as our sample of

things to joke about when raising an autistic child.

392

So actually, my favorite thing with Sona Danto is for a long time, were legitimately, and

we might still be able to, we were legitimately able to say that like a couple of disabled

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people on social time, like actual legitimate disability.

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did more for autistic adults than us who speaks it.

395

Yeah, I mean, you all were giving people, you guys were tablets, computers, know, like

resources and support, you know, and it wasn't about getting attention and overwhelming

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marches and walks, you know, it was just about real community grassroots, you know,

connection.

397

You know, it's, have somebody in iPad.

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I have actual, we did materials.

399

Yeah.

400

It was great.

401

I can't find anything like that again.

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Actually, I do want to give a bit of a shout out to who was it?

403

We got donations.

404

Speak for Yourself AAC program.

405

Oh, I love them.

406

I actually...

407

Yeah, no, it was really cool.

408

love speaking for Yourself.

409

I actually have a ton of their wiping claws that they gave me when we went to ASHA in

410

And yeah.

411

They're lovely, lovely people.

412

And although I should mention the fact that we are being sponsored by AbleNet, who is a

competitor.

413

I mean, that's okay.

414

I'm sure they are also lovely Yes, they are also lovely people.

415

So they are delightful.

416

Their money is lovely.

417

Money spends are lovely.

418

Yeah.

419

Thank you for your money.

420

I want to read this one on the Tony Downsick page.

421

So just because I'm thinking of some people who will not be aware.

422

So what is the meaning of tone it down taupe in autism awareness?

423

The phrase tone it down taupe has become a powerful symbol within the autism community

424

represented.

425

The phrase originated as a critique of the typical portrayal of light it up blue.

426

Tone it down, tone down the fear rhetoric, tone down the alarmism.

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It is not necessary to light anything blue to show support and love for an autistic

individual.

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That can be accomplished by, well, actually supporting autistic people.

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And then, so like, it's just so funny, like some of the, you know, like people, you know,

talking about like the fear mongering and the satire, you know what I mean?

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And like, you know, rejecting these, like, you know, so like, I think about some of the

memes that were out there, like, all-istics, where every conversation feels like looking

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at these fonts.

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and like overwhelming.

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I'm realizing we might need to explain what turn it down top is our audience because I

don't know if he's going to hear this.

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Yeah, I can explain.

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So on it down top is satire movement.

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It's in response to light it up blue, which is an autism awareness thing where you put

blue on your house to show that you are aware of and afraid of autism.

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I'm not wrong.

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Awareness Month is for us.

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That's why I'm laughing because like...

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Awareness Month is Awareness Month, that is correct.

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Tone it down top.

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It's just, you know, you take a breath, calm down, look at the soothing neutrals.

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And it is our Awareness Month of, for people who are suffering from a lack of us, the

ribbons have eyeballs on them, like googly eyes, because holistic people need you to make

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eye contact.

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Very important.

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But that's also a joke because we're funny.

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And it really is just like a counter to that.

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And it's satire and it's a way to, you know, gently turn it around to let people laugh

because sometimes you respond to things that are, you know, unfunny and let's be real

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awareness that's hateful is unfunny at its very core.

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You turn those things around and you make a joke.

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And if we're laughing together, then we're not as angry.

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Yes.

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Exactly.

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Like, you know, saying, know, project, you can help your holistic family member express

themselves by flapping their hands.

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It is much funnier than, okay, calm down.

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kid hurt, know, flapping their hands is hurting zero people.

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Chill out.

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It is much funnier to flap somebody's hands.

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Yeah.

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You know what I like about Turn It Down to Hope is how it's not like a one-off.

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Like, there's so many, since the dawn of autisticness online, we've had satire.

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Yeah.

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The autistic party giraffe.

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I love the Eswistic Party draft, but Institute for the Study of the Neurology.

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that's one of my favorite ones.

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I also really like the neurotypical wife.

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Yeah.

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needs to be a new generation of these.

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I need to see what the new generation comes up with on satire pages.

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I hope they do.

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Satire has been a thing for us.

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So I think that, I think that, you know how like all the music, like people are doing all

the remakes and all this kind of stuff.

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I feel like some of the autistic TikTok and a lot of the younger influencers, if they were

to discover some of these things, I feel like they could kind of introduce it to a new

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audience and just kind of share thoughts about it.

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Because I really feel like it's just a lack of awareness.

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It's not like a rejection of these concepts, because if you're gonna be real, people are

still talking about a lot of the same stuff that we've been fighting for from the job.

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I mean, I will say, when I see what people are arguing from,

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don't know how old I am, but that seems like a really long time ago.

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The things that we were arguing for then that people are still arguing for now.

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I'm like, I've moved past that and moved on to a different argument altogether.

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But like at the same time, I'm trying to be mindful of the that this is new.

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Because I know when it was new for me, everything was like, you know, I don't know.

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So it's like you try to have an understanding of, you know,

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people's circumstances and how when you're it's so fresh and new and it's just like it's

your everything you know I think what's different about it this time it's just how big it

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exploded and how big the inaccurate definition of neurodivergent exploded yeah yeah but we

always had our autistic cousins though

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You know, autistic cousins weren't just the phenotypes.

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was also, yeah, was the, yeah, I was saying like inclusive of the, the BAP and then other

people with other neurodivergence.

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Like we know that now, but so it's really cool.

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Yeah.

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Yeah.

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We talked about that.

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Cause like, even like, it's so interesting, like even when you had your blog, you know,

mean initially, and I remember thinking, why is it radical neurodivergence speaking and

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not radical?

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You know, cause like back then, like, you know, autistic, autistic, autistic was

everywhere.

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Like that was the thing.

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You know what I mean?

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And you were like, no, I'm saying it all in my freaking neurodivergence.

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Like, yup.

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Cause it's not just the one.

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Can't take any of it away and have the same person.

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No.

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I think the thing is that specifically the TikTok algorithm, the TikTok algorithm has been

such a game changer for the neurodiversity movement, but in bad ways and good ways.

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it

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And because all of these people created names for themselves, even like Paige, they

created their names because they were trying to just like, do the same thing we've always

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done, tell our stories.

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Thanks for listening to Herding Cats.

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