This was such a wonderful and helpful conversation. Thank you for recording and sharing. The criteria changes weren’t completely new to me, but the way you walked through it, infused with examples from your own personal life and professional training, illustrated what’s been happening over the last few decades really well. It also gives me hope; if 20 years ago, the landscape looked so different, I wonder how we will talk about autism in another 10-20 years.
The “because she made eye contact” title made me think about my own evaluation. I was told to meet criteria “they’d expect to see a very specific type of behavior”. Nobody asked me how I listen to music…
I'm so glad listening to this and hearing us talk through it was validating, and at the same time am so sorry to hear about the invalidation that happened as part of your evaluation. 😔
In the way that everything is progressing, i wonder what we will say about autism in 5 years, the advancement of the last 5 years has been crazy. I got to write a personal narrative for them to really understand my experience in life.
but if i would have gone to the one in my town... i would be "not autistic" because i occasionally make eye contact. The such narrow view such as that will miss so many that know how to mask.
right?! the conversation has definitely speeded up incrementally and the speed of how things are changing compounding. Which means the conversations will likely look so different in 5 years!
This was such a good conversation to hear, since the grief that came with the diagnosis of not knowing sooner. The evolution of the diagnosis as well.
Though I still remember that not even a year ago - I spoke to the autism assessor here… and she still spoke of Asperger’s and no eye contact. And I talked about online groups, and she leads a group here. That is who made me be more open about my diagnosis when I got it. I need to advocate/educate people in my community.
Yes! And this is exactly why Donna and I talk about being embarrassed by our field 🤦♀️ This outdated thinking is still SO COMMON in clinical spaces. And sadly it often takes about 20 years for research to trickle down to clinical practice. So we have a ways to go. And I love that that is part of what motivated you about being visibly and openly Autistic 💪🏻
I am thankful that interaction and conversation took place at CVS at a pick up counter, and not like many of my friends that have gone to them and find possible misdiagnosis's. Yes, being open with being autistic has led to great conversations.
as you were typing your response - another friend who I peg as autistic, was just diagnosed with bipolar.... now i would believe that, if that wasn't multiple people I peg as autistic or adhd that come back with a bipolar diagnosis. It seems to be the diagnosis to give at my mental health clinic in town. slightly curious if I would have gone to them, if I would be bipolar too.
My mum and I have had a couple of conversations where she's sort of - flirted around apologizing that she missed something - that I wasn't identified in childhood. I think she's largely gotten past that feeling, thankfully, but I'm so glad to have this context for her, should it ever come up again, re: the evolution of the diagnostic criteria. Exactly as you said, Megan Anna - there's no way I'd have met those incredibly strict, sub-36 month criteria (we know /now/ that autistic kids can present as hyperverbal, but at the time, that alone probably ruled me straight out).
What a treat to follow two brilliant brains through a really comprehensive conversation.
I really love that this framing perhaps could help your mum release any residual guilt. Yes, I really like sharing this context with providers and others -- because I think it does help release some of the guilt/shame/anger when we realize we're like all in this cultural moment together (and not in a way that there can't be grief we didn't get to understand ourselves for so much of our lives ... but in a sense of like ... well ... it literally wasn't an option for most of us given the givens).
It's hard to not place ourselves back then with the knowledge we have as opposed to how much technology and knowledge of things like autism have changed. Its kinda like I don't think there could be a lot of the serial killers that were back then, since a lot was miscommunication of the police and changing locations and then not even having the computer to look through records like now can happen. I realized that during a show, I always forget what we have now. Isn't what we always had.
I never had that conversation with my mom, but my doctor who has been my doctor since I was 16 years old, I told her about diagnosis, and she exclaimed, "that's the final piece of the puzzle, I knew adhd but I knew there was something more but didn't quite know what" and I said something about knowing sooner, and she replied with "the knowledge we have about autism has changed so much, the knowledge just wasn't there at that time" Ever since then the grief of not knowing has changed in my mind, to remember the time and to remember with how they treated autism and pathologized it back then, maybe it wasn't necessarily a horrible thing.
when you said medical provider... I just kinda giggled. small town, my mom is nurse, the doctor in question is a family friend and known me lot longer than she was my doctor, she only just stopped being my provider 2 years ago, but ive kept her up-to-date, thats one thing in a small town, relationships are very multi-faceted- professional and non professional or blend of the 2. (this is the thing that gets me in trouble at work the most)
This was such a wonderful and helpful conversation. Thank you for recording and sharing. The criteria changes weren’t completely new to me, but the way you walked through it, infused with examples from your own personal life and professional training, illustrated what’s been happening over the last few decades really well. It also gives me hope; if 20 years ago, the landscape looked so different, I wonder how we will talk about autism in another 10-20 years.
The “because she made eye contact” title made me think about my own evaluation. I was told to meet criteria “they’d expect to see a very specific type of behavior”. Nobody asked me how I listen to music…
Those examples felt really validating; thank you.
I'm so glad listening to this and hearing us talk through it was validating, and at the same time am so sorry to hear about the invalidation that happened as part of your evaluation. 😔
In the way that everything is progressing, i wonder what we will say about autism in 5 years, the advancement of the last 5 years has been crazy. I got to write a personal narrative for them to really understand my experience in life.
but if i would have gone to the one in my town... i would be "not autistic" because i occasionally make eye contact. The such narrow view such as that will miss so many that know how to mask.
right?! the conversation has definitely speeded up incrementally and the speed of how things are changing compounding. Which means the conversations will likely look so different in 5 years!
This was such a good conversation to hear, since the grief that came with the diagnosis of not knowing sooner. The evolution of the diagnosis as well.
Though I still remember that not even a year ago - I spoke to the autism assessor here… and she still spoke of Asperger’s and no eye contact. And I talked about online groups, and she leads a group here. That is who made me be more open about my diagnosis when I got it. I need to advocate/educate people in my community.
Yes! And this is exactly why Donna and I talk about being embarrassed by our field 🤦♀️ This outdated thinking is still SO COMMON in clinical spaces. And sadly it often takes about 20 years for research to trickle down to clinical practice. So we have a ways to go. And I love that that is part of what motivated you about being visibly and openly Autistic 💪🏻
I am thankful that interaction and conversation took place at CVS at a pick up counter, and not like many of my friends that have gone to them and find possible misdiagnosis's. Yes, being open with being autistic has led to great conversations.
as you were typing your response - another friend who I peg as autistic, was just diagnosed with bipolar.... now i would believe that, if that wasn't multiple people I peg as autistic or adhd that come back with a bipolar diagnosis. It seems to be the diagnosis to give at my mental health clinic in town. slightly curious if I would have gone to them, if I would be bipolar too.
My mum and I have had a couple of conversations where she's sort of - flirted around apologizing that she missed something - that I wasn't identified in childhood. I think she's largely gotten past that feeling, thankfully, but I'm so glad to have this context for her, should it ever come up again, re: the evolution of the diagnostic criteria. Exactly as you said, Megan Anna - there's no way I'd have met those incredibly strict, sub-36 month criteria (we know /now/ that autistic kids can present as hyperverbal, but at the time, that alone probably ruled me straight out).
What a treat to follow two brilliant brains through a really comprehensive conversation.
Danke schoen. 😊
I really love that this framing perhaps could help your mum release any residual guilt. Yes, I really like sharing this context with providers and others -- because I think it does help release some of the guilt/shame/anger when we realize we're like all in this cultural moment together (and not in a way that there can't be grief we didn't get to understand ourselves for so much of our lives ... but in a sense of like ... well ... it literally wasn't an option for most of us given the givens).
It's hard to not place ourselves back then with the knowledge we have as opposed to how much technology and knowledge of things like autism have changed. Its kinda like I don't think there could be a lot of the serial killers that were back then, since a lot was miscommunication of the police and changing locations and then not even having the computer to look through records like now can happen. I realized that during a show, I always forget what we have now. Isn't what we always had.
I never had that conversation with my mom, but my doctor who has been my doctor since I was 16 years old, I told her about diagnosis, and she exclaimed, "that's the final piece of the puzzle, I knew adhd but I knew there was something more but didn't quite know what" and I said something about knowing sooner, and she replied with "the knowledge we have about autism has changed so much, the knowledge just wasn't there at that time" Ever since then the grief of not knowing has changed in my mind, to remember the time and to remember with how they treated autism and pathologized it back then, maybe it wasn't necessarily a horrible thing.
I love how the context of this has helped you hold the not knowing with more gentleness. And also ... I love that response from your medical provider!
when you said medical provider... I just kinda giggled. small town, my mom is nurse, the doctor in question is a family friend and known me lot longer than she was my doctor, she only just stopped being my provider 2 years ago, but ive kept her up-to-date, thats one thing in a small town, relationships are very multi-faceted- professional and non professional or blend of the 2. (this is the thing that gets me in trouble at work the most)