I'm not sure I agree with his "post-Autism" stuff because if the construct of "Autism" didn't exist, we wouldn't be able to find each other and create Autistic culture and community to escape the NTs.
There was lots I didn't agree with in this episode but I THINK what he is trying to say here is the term AUTISM is a MEDICAL TERM.
Think of life in the Renaissance era, right? Michaelangelo was "pre-autistic). He was Autistic of course, but there was no medicalized concept of autism so he was just a person. It was, in some ways, a more free indentification.
Look I love being Autistic and I am proud to be Autistic but that definition is fraught - for some people I'm too autistic, for others I'm not autistic enough. Do I meet the DSM criteria now that I have done a lot of work and self acceptance?
What I like about Richard is that he is such a bottom up processor he reconsiders everything. Even things that feel sacred or untouchable and makes me rethink it all.
I really appreciated this episode. I think it's so important to step out of the echo chamber and consider other angles. I also appreciated Richard's commitment to solid scientific processes and analysis.
This was one of my favorite podcasts. I’m particularly appreciative of Angela and Matt being vulnerable enough to hear controversial perspectives about “the state of the medicine” with such open, respectful minds. Great modeling of how we all can approach similar topics. From Richard, I liked his caution about rushing to embrace a label than can signal (to others) quite deviant behavior as well as relatively tame inner struggles and monologues. Especially when we already have enough other burdens to bear! And I also liked the reminder that a lot of our “pathologies” are understandable human responses to a rapidly evolving complex world. Like going from barefoot life to being expected to do everything in stilettos. I love this podcast’s theme of celebrating autistic culture. But like athletes have long painful roads to glory, autistics are on individual journeys beset by difficulties that don’t always conclude successfully. This episode handled that tension beautifully. The podcast wouldn’t be as authentic if it was always ra ra autism and only our own views on our psychologies.
Great feedback. I think it was one of our more challenging episodes. I was very worried about it and before we recorded I promised Matt we would make it a bonus for paid subscribers if we didn't feel like we could stand behind it, but in the end I was really proud of how it came out. I still feel attached to the words PDA and Autistic, but, I can see Richard is a deeper thinker than I am on some of these things and open to evolving. I mean I was really attached to a certain Nazi term for almost a decade and I evolved beyond that word and label. I am sure I am not done evolving. Thanks for listening with care and being open to learning something along with us.
Hi Charlene! Sami here, I'm the Content Manager for the Autistic Culture Podcast. Richard was definitely a controversial perspective - but he also made points that needed to be heard and we value nuance and diversity of opinions on this show! Stepping out of the echo chamber is definitely always necessary! Thank you for watching and enjoying this episode :)
Great episode! I'm glad it's being studied even if there are such obvious limitations to the current science. I reckon it's gotta be impossible to find a statistically significant sample size of people who all have the exact same presentation, though. I like to call it having the "don't you f***ing tell me what to do I can figure it out for myself flavor of autism." I feel like the idea tends to lack nuance because it's a circular spectrum with a lot of different factors that influence the way it manifests (like your super handy infographic on the meme page describing autism expressions) and it can't really be neatly boiled down to a handful of bullet points like the DSM/ICD would like. My own need for independence and autonomy and dislike of authority has changed so much over the decades. For me as a kid who was labelled as pathologically rebellious, it came from having an adult reading level in elementary school and being at the same intellectual level as my caregivers without the prefrontal cortex development and experience to keep me from making terrible choices, like running away to live in the woods for a week when I was 13. Getting in trouble in the work environment as an adult for being too bluntly spoken or expressing frustration with illogical decisions could be attributed to PDA or just to being overstimulated, impatient, and bored with unidentified and unaccommodated autism. Having a high need for internally located authority has made being in solo private practice just marvelous for me and I am really glad to finally never have to work for anyone else again. As long as I play the right game for the insurance companies, that is.
The part that has always impacted me the most negatively has been the part where it's almost painful to ask for help. Some aspect of that was internalized ableism, but I think a big part of it is just really getting annoyed by my flow state being interrupted and working best on my own. Or the fact that sometimes asking for help can create more work for me because I have to figure out how to articulate what I need and then spell it out in a way that's understandable to the helper, which, like, obviously I am not someone whose skills lie in being succinct.
Thanks for the thoughtful discussion, as always! -Sue
I hope DMDD (disruptive mood dysregulation disorder) along with ODD get talked about more in relation to PDA as the podcast takes on this topic. Really great episode! Loved the accountability being a part of studies and research reform.
Hi Mia! Sami here, I'm the Content Manager for the Autistic Culture Podcast, and I absolutely think that this conversation needs to be had regarding DMDD - totally similar symptoms to PDA! Thanks for sharing and for listening to the episode :)
I hope you guys know how much you're poking a beast here. Hahah.
This was an interesting episode. You might want to consider getting a different PDA perspective to explore the lived experience from another angle. You didn't discuss the internal experience of resistance even to things that the PDAer wants to do, which many adult PDAers share is the core differentiating factor between "PDA" and "demand avoidance".
Lots of neurodivergent people have a lifelong drive for autonomy and resist demands placed on us by others, and this makes sense. Fewer experience resistance to things we actually want to do. My understanding from listening to the experiences of adult PDAers is that this second experience is quite debilitating, and that's why they are so frustrated by the co-opting of the term PDA.
Yeah I think we made it pretty clear that we knew it was a controversial perspective but I think it's one that deserves to be heard. I thnk we talk plenty and there is plenty of info out there about PDA. Matt identifies as PDA and I identify as having a PDA kid (OH MY GOD DO I HAVE A PDA KID). This conversation didn't change my believe that PDA is real, but I'm open to looking more critically at science and considering other ideas even ones I don't agree with.
If you listen to what he says without being defensive, he makes some valid points.
I didn’t take it personally and I don’t actually identify as a PDAer myself. I just think you all could help bring out some more nuance in a second conversation. :)
There’s a lot there. And this has been a huge topic in the PDA community in the past few weeks in particular.
I'm not sure I agree with his "post-Autism" stuff because if the construct of "Autism" didn't exist, we wouldn't be able to find each other and create Autistic culture and community to escape the NTs.
There was lots I didn't agree with in this episode but I THINK what he is trying to say here is the term AUTISM is a MEDICAL TERM.
Think of life in the Renaissance era, right? Michaelangelo was "pre-autistic). He was Autistic of course, but there was no medicalized concept of autism so he was just a person. It was, in some ways, a more free indentification.
Look I love being Autistic and I am proud to be Autistic but that definition is fraught - for some people I'm too autistic, for others I'm not autistic enough. Do I meet the DSM criteria now that I have done a lot of work and self acceptance?
What I like about Richard is that he is such a bottom up processor he reconsiders everything. Even things that feel sacred or untouchable and makes me rethink it all.
I really appreciated this episode. I think it's so important to step out of the echo chamber and consider other angles. I also appreciated Richard's commitment to solid scientific processes and analysis.
Right? He's really brave. Definitely made me question some things.
Agreed!
This was one of my favorite podcasts. I’m particularly appreciative of Angela and Matt being vulnerable enough to hear controversial perspectives about “the state of the medicine” with such open, respectful minds. Great modeling of how we all can approach similar topics. From Richard, I liked his caution about rushing to embrace a label than can signal (to others) quite deviant behavior as well as relatively tame inner struggles and monologues. Especially when we already have enough other burdens to bear! And I also liked the reminder that a lot of our “pathologies” are understandable human responses to a rapidly evolving complex world. Like going from barefoot life to being expected to do everything in stilettos. I love this podcast’s theme of celebrating autistic culture. But like athletes have long painful roads to glory, autistics are on individual journeys beset by difficulties that don’t always conclude successfully. This episode handled that tension beautifully. The podcast wouldn’t be as authentic if it was always ra ra autism and only our own views on our psychologies.
Great feedback. I think it was one of our more challenging episodes. I was very worried about it and before we recorded I promised Matt we would make it a bonus for paid subscribers if we didn't feel like we could stand behind it, but in the end I was really proud of how it came out. I still feel attached to the words PDA and Autistic, but, I can see Richard is a deeper thinker than I am on some of these things and open to evolving. I mean I was really attached to a certain Nazi term for almost a decade and I evolved beyond that word and label. I am sure I am not done evolving. Thanks for listening with care and being open to learning something along with us.
Hi Charlene! Sami here, I'm the Content Manager for the Autistic Culture Podcast. Richard was definitely a controversial perspective - but he also made points that needed to be heard and we value nuance and diversity of opinions on this show! Stepping out of the echo chamber is definitely always necessary! Thank you for watching and enjoying this episode :)
Great episode! I'm glad it's being studied even if there are such obvious limitations to the current science. I reckon it's gotta be impossible to find a statistically significant sample size of people who all have the exact same presentation, though. I like to call it having the "don't you f***ing tell me what to do I can figure it out for myself flavor of autism." I feel like the idea tends to lack nuance because it's a circular spectrum with a lot of different factors that influence the way it manifests (like your super handy infographic on the meme page describing autism expressions) and it can't really be neatly boiled down to a handful of bullet points like the DSM/ICD would like. My own need for independence and autonomy and dislike of authority has changed so much over the decades. For me as a kid who was labelled as pathologically rebellious, it came from having an adult reading level in elementary school and being at the same intellectual level as my caregivers without the prefrontal cortex development and experience to keep me from making terrible choices, like running away to live in the woods for a week when I was 13. Getting in trouble in the work environment as an adult for being too bluntly spoken or expressing frustration with illogical decisions could be attributed to PDA or just to being overstimulated, impatient, and bored with unidentified and unaccommodated autism. Having a high need for internally located authority has made being in solo private practice just marvelous for me and I am really glad to finally never have to work for anyone else again. As long as I play the right game for the insurance companies, that is.
The part that has always impacted me the most negatively has been the part where it's almost painful to ask for help. Some aspect of that was internalized ableism, but I think a big part of it is just really getting annoyed by my flow state being interrupted and working best on my own. Or the fact that sometimes asking for help can create more work for me because I have to figure out how to articulate what I need and then spell it out in a way that's understandable to the helper, which, like, obviously I am not someone whose skills lie in being succinct.
Thanks for the thoughtful discussion, as always! -Sue
He is a seriously out-of-the-box guy. I like people that push my intellectual limits.
I hope DMDD (disruptive mood dysregulation disorder) along with ODD get talked about more in relation to PDA as the podcast takes on this topic. Really great episode! Loved the accountability being a part of studies and research reform.
Hi Mia! Sami here, I'm the Content Manager for the Autistic Culture Podcast, and I absolutely think that this conversation needs to be had regarding DMDD - totally similar symptoms to PDA! Thanks for sharing and for listening to the episode :)
I hope you guys know how much you're poking a beast here. Hahah.
This was an interesting episode. You might want to consider getting a different PDA perspective to explore the lived experience from another angle. You didn't discuss the internal experience of resistance even to things that the PDAer wants to do, which many adult PDAers share is the core differentiating factor between "PDA" and "demand avoidance".
Lots of neurodivergent people have a lifelong drive for autonomy and resist demands placed on us by others, and this makes sense. Fewer experience resistance to things we actually want to do. My understanding from listening to the experiences of adult PDAers is that this second experience is quite debilitating, and that's why they are so frustrated by the co-opting of the term PDA.
Kristy Forbes speaks on this topic frequently.
Yeah I think we made it pretty clear that we knew it was a controversial perspective but I think it's one that deserves to be heard. I thnk we talk plenty and there is plenty of info out there about PDA. Matt identifies as PDA and I identify as having a PDA kid (OH MY GOD DO I HAVE A PDA KID). This conversation didn't change my believe that PDA is real, but I'm open to looking more critically at science and considering other ideas even ones I don't agree with.
If you listen to what he says without being defensive, he makes some valid points.
Yes, I agree he makes some interesting points.
I didn’t take it personally and I don’t actually identify as a PDAer myself. I just think you all could help bring out some more nuance in a second conversation. :)
There’s a lot there. And this has been a huge topic in the PDA community in the past few weeks in particular.