1 00:00:00,000 --> 00:00:05,000 Hello, welcome to another episode of Unpacking Neuroqueerness. 2 00:00:05,000 --> 00:00:11,000 Well, I really wish I didn't have to record this episode. 3 00:00:11,000 --> 00:00:22,000 I really wish that we weren't even still having to have this conversation, but here we are. 4 00:00:22,000 --> 00:00:32,000 And this is just a reminder of why it's so important to keep advocating and doing the work that I do, because 5 00:00:32,000 --> 00:00:49,000 society still, in large, this does not apply to every person, this applies systemically to society. 6 00:00:49,000 --> 00:00:52,000 It's not even individually about people. 7 00:00:52,000 --> 00:00:57,000 Society wants... 8 00:00:57,000 --> 00:01:01,000 Society still wants to get rid of autistic people. 9 00:01:01,000 --> 00:01:10,000 Society is still pushing eugenics articles. 10 00:01:10,000 --> 00:01:22,000 It is 2024, and we are still dealing with this in all fairness. 11 00:01:22,000 --> 00:01:29,000 This article I'm going to be talking about today was published December 4th of 2023, but you get the message. 12 00:01:29,000 --> 00:01:34,000 We shouldn't be having this conversation anymore. 13 00:01:34,000 --> 00:01:46,000 We're this article that came out in the San Francisco Chronicle, and San Francisco, known as a very progressive city, 14 00:01:46,000 --> 00:01:55,000 this is what makes me even more alarmed, even more upset, is that we're supposed to be a progressive city, 15 00:01:55,000 --> 00:02:07,000 and we are talking about treating a developmental disability instead of just accommodating disabled people. 16 00:02:07,000 --> 00:02:18,000 We are making links, we are making this dangerous association, once again, of disability and disease, which are very different things. 17 00:02:18,000 --> 00:02:24,000 Can we please, as a society, can we stop comparing disability to disease? 18 00:02:24,000 --> 00:02:37,000 You see, when you think of disability and you automatically think of disease, that comes from internalized ableism, 19 00:02:37,000 --> 00:02:46,000 that whole mentality comes from systemic ableism. 20 00:02:46,000 --> 00:02:51,000 I can't believe I have to keep repeating this, but let's get into it. 21 00:02:51,000 --> 00:02:58,000 This article came out on the San Francisco Chronicle, it's talking about a UCSF study. 22 00:02:58,000 --> 00:03:05,000 This is a major university in a so-called progressive city, mind you, 23 00:03:05,000 --> 00:03:13,000 and it is titled What We Know About Autism and How to Treat It Could Change After New UCSF Study. 24 00:03:13,000 --> 00:03:23,000 This article was published by Jason Fagone on December 4th, 2023, and is on the San Francisco Chronicle website. 25 00:03:23,000 --> 00:03:31,000 It is not a paid article. They might do that because people do that sometimes, they release an article that is highly problematic, 26 00:03:31,000 --> 00:03:38,000 and they get called out, and then they put it behind a paywall that has happened before in Brazil, where I'm from. 27 00:03:38,000 --> 00:03:44,000 It's a whole different story, I'm not going to get into that because I would just go on a tangent. 28 00:03:44,000 --> 00:03:53,000 But, yes, here we have the, you see an op, a photo of Dr. Neven Krogan, 29 00:03:53,000 --> 00:04:00,000 director of quantitative biosciences institute and professor of molecular pharmacology at UCSF. 30 00:04:00,000 --> 00:04:05,000 This is how the article starts. 31 00:04:05,000 --> 00:04:14,000 By fusing the power of artificial intelligence with new molecular techniques that also seemed ripped from science fiction, 32 00:04:14,000 --> 00:04:23,000 researchers at UCSF have mapped the microscopic world of autism spectrum disorder in unprecedented detail, 33 00:04:23,000 --> 00:04:31,000 pointed towards possible therapies for a subset of patients who have genetic mutations according to a new study. 34 00:04:31,000 --> 00:04:48,000 Here we go again with speaking of autistic people as if they're like experiments or like specimen. 35 00:04:48,000 --> 00:04:57,000 You know, like, it just, duh, okay, let me ground myself again. 36 00:04:57,000 --> 00:05:08,000 This opens kind of, so the article continues, this opens up kind of a Goldilocks of potential treatments, 37 00:05:08,000 --> 00:05:16,000 said one of the studies author, treatments, treatments, Jesus, and since the 1990s, mind you, 38 00:05:16,000 --> 00:05:26,000 the neurodiversity movement has been saying no to treating autistic people. 39 00:05:26,000 --> 00:05:38,000 Now, there are, I want to mention, autism is a spectrum of different traits to different intensities and different support needs, 40 00:05:38,000 --> 00:05:43,000 and some people have higher support needs and some people have co-occurring disabilities, 41 00:05:43,000 --> 00:05:48,000 which greatly influence their experience of autism. 42 00:05:48,000 --> 00:06:00,000 And it is, I have nothing against people seeking treatment for certain co-occurring disabilities that cannot simply be accommodated by the social model of disability. 43 00:06:00,000 --> 00:06:02,000 I understand that. 44 00:06:02,000 --> 00:06:09,000 But let's not generalize, let's not say autism as a whole, because autism is more about, 45 00:06:09,000 --> 00:06:14,000 one of the core things of autism is social communication differences, 46 00:06:14,000 --> 00:06:19,000 as well as sensory sensitivities, it is social communication differences, 47 00:06:19,000 --> 00:06:26,000 and how, what is the best, the thing is autistic people have a different style of communication. 48 00:06:26,000 --> 00:06:30,000 I speak of this in the episode 12 about the double empathy theory. 49 00:06:30,000 --> 00:06:38,000 It is a different style of communication, and if we, if society, if neurotypical, if non-autistic society, 50 00:06:38,000 --> 00:06:47,000 could just make more of an effort to understand autistic people and their communication styles, 51 00:06:47,000 --> 00:06:55,000 we would have a lot better communication, and we wouldn't be calling autistic people baffling or complex, 52 00:06:55,000 --> 00:07:02,000 because here we go again, so I'm going to read you another little piece of this article, like, right after what I just read here. 53 00:07:02,000 --> 00:07:07,000 It says, this opens, um, okay, so it talks about, 54 00:07:07,000 --> 00:07:15,000 I'm sorry, I'm not, I'm just going to save everyone's time, but at the, at the end of, of the, 55 00:07:15,000 --> 00:07:24,000 because I think I already mentioned this, but at the end of this, there's a phrase, because, um, okay, 56 00:07:24,000 --> 00:07:26,000 so I'm just going to read this last phrase. 57 00:07:26,000 --> 00:07:35,000 It's an opportunity for shots on goal that we just have not had before, because of the complexity of autism. 58 00:07:35,000 --> 00:07:38,000 Here we, this is exactly what I'm talking about. 59 00:07:38,000 --> 00:07:49,000 We are, we are, we have articles from major universities and so-called progressive cities calling autistic people complex, 60 00:07:49,000 --> 00:07:54,000 treating autistic people like specimens. 61 00:07:54,000 --> 00:08:02,000 Geez, can we just understand, can we just listen to autistic voices, can we just listen to lived experience, 62 00:08:02,000 --> 00:08:10,000 can we just listen to what people have been saying, can we just listen to what autistic people need in terms of accommodations. 63 00:08:10,000 --> 00:08:16,000 Now this is what I was trying to get at, sensory sensitivities, those can be accommodated. 64 00:08:16,000 --> 00:08:25,000 You can turn the lights down, you can turn the sound down, we don't have to put, we don't have to cause PTSD on someone 65 00:08:25,000 --> 00:08:36,000 by putting them through so-called exposure therapies, by exposing them to pain, to sensory overload, which is sensory pain. 66 00:08:36,000 --> 00:08:44,000 And it is very hard for non-autistic people and the people that are running these therapies are majorly non-autistic people 67 00:08:44,000 --> 00:08:50,000 and it's very hard for them to understand the kind of pain they are inflicting on their clients. 68 00:08:50,000 --> 00:08:53,000 By doing this kind of stuff. 69 00:08:53,000 --> 00:09:00,000 Instead of just, how about instead of trying to rewire their brain and make them less autistic, 70 00:09:00,000 --> 00:09:06,000 which is what these therapies like ABA are doing and I speak of this in episode 15, 71 00:09:06,000 --> 00:09:13,000 how about we just maybe turn the lights down, maybe turn the sound down. 72 00:09:13,000 --> 00:09:15,000 Hmm, right? 73 00:09:15,000 --> 00:09:18,000 Instead of trying to fix people, instead of trying to treat them, 74 00:09:18,000 --> 00:09:25,000 instead of trying to so-called treat autism as if it were some kind of disease. 75 00:09:25,000 --> 00:09:30,000 No, it is a disability. Can it be really disabling? Can it have co-occurring disabilities? 76 00:09:30,000 --> 00:09:38,000 Are there disabilities within the autistic experience that maybe have to be treated or cured? 77 00:09:38,000 --> 00:09:43,000 Yes, but autism as a whole, no, that is not what autism is. 78 00:09:43,000 --> 00:09:49,000 Autism is primarily communication differences, sensory differences, speech differences. 79 00:09:49,000 --> 00:09:53,000 All of these things can be accommodated. 80 00:09:53,000 --> 00:09:57,000 We can do these things in a neurodiversity affirming way. 81 00:09:57,000 --> 00:10:01,000 We do not have to treat people or fix people. 82 00:10:01,000 --> 00:10:10,000 Yes, this has been a frustrating episode to record, but here, you know, let's go. 83 00:10:10,000 --> 00:10:14,000 Let's do this because this needs to be called out. 84 00:10:14,000 --> 00:10:19,000 Okay, so, yes, this is that. 85 00:10:19,000 --> 00:10:22,000 This is, I want to call out this person. 86 00:10:22,000 --> 00:10:28,000 This opens up kind of a goldilocks of potential targets, said one of the studies author, 87 00:10:28,000 --> 00:10:35,000 Matthew State, a UCSF child psychiatrist and geneticist. 88 00:10:35,000 --> 00:10:41,000 Matthew, my friend, please read about neurodiversity. 89 00:10:41,000 --> 00:10:44,000 Please read from neurodivergent people. 90 00:10:44,000 --> 00:10:47,000 Please read from people with lived experience. 91 00:10:47,000 --> 00:10:54,000 Please listen to disabled people when they tell you what they need in order to be better accommodated 92 00:10:54,000 --> 00:10:58,000 instead of trying to treat us. Okay? 93 00:10:58,000 --> 00:11:01,000 Stop, stop, full stop right there. 94 00:11:01,000 --> 00:11:05,000 We are not diseased. We are not talking about cancer. 95 00:11:05,000 --> 00:11:10,000 We do not want treatment. 96 00:11:10,000 --> 00:11:18,000 Some may want treatment for certain things that they experience as part of their autistic experience, 97 00:11:18,000 --> 00:11:20,000 but that is not autism. 98 00:11:20,000 --> 00:11:27,000 We do not want autistic people as a majority if you read anything about the neurodiversity paradigm 99 00:11:27,000 --> 00:11:34,000 and the article out there now that's been out there for a while talking about neurodiversity, 100 00:11:34,000 --> 00:11:40,000 you will understand that this is problematic. 101 00:11:40,000 --> 00:11:46,000 What you are doing with this, what UCSF is doing now trying to use, 102 00:11:46,000 --> 00:11:56,000 this whole article goes on about using AI to like essentially make people less autistic. 103 00:11:56,000 --> 00:12:07,000 There's just so much to unpack here. It's hard to even... 104 00:12:07,000 --> 00:12:11,000 Oh, my God. Okay. 105 00:12:11,000 --> 00:12:15,000 Here's another little fun part of this. 106 00:12:15,000 --> 00:12:23,000 In addition, researchers leveraged a system originally developed at UCSF to study viruses. 107 00:12:23,000 --> 00:12:27,000 Yes, we are comparing autism to viruses. 108 00:12:27,000 --> 00:12:42,000 We are comparing... Jesus, we are once again comparing people with a developmental disability to disease. 109 00:12:42,000 --> 00:12:52,000 We are once again comparing disabilities to disease. Can we stop doing this? 110 00:12:52,000 --> 00:13:02,000 Oh, my God. This is all about like changing genes and I'm like, no, no, no, change the lack of accommodation, 111 00:13:02,000 --> 00:13:09,000 change the lack of support. Oh, my God. Oh, my God. This freaking... 112 00:13:09,000 --> 00:13:12,000 Ah, here we go. 113 00:13:12,000 --> 00:13:17,000 We've all... We've been at the bleeding edge. This goes on. 114 00:13:17,000 --> 00:13:23,000 We've been at the bleeding edge of putting all this together. Said another study leader, 115 00:13:23,000 --> 00:13:30,000 Nathan Krogan, director of the Quantitive Biosciences Institute within UCSF School of Pharmacy, 116 00:13:30,000 --> 00:13:36,000 which coordinated the research along with the Department of Psychiatry and Behavioral Sciences, 117 00:13:36,000 --> 00:13:43,000 which is here once again framing autism as a behavioral thing. 118 00:13:43,000 --> 00:13:53,000 And it's like... Instead of just understanding, like, well, there are behaviors that autistic people present 119 00:13:53,000 --> 00:13:59,000 because of being misunderstood, because of not getting their needs met. 120 00:13:59,000 --> 00:14:09,000 An autistic person is in distress, is having a meltdown, and it's not because autistic people like to have meltdowns 121 00:14:09,000 --> 00:14:14,000 or that it is... The meltdown occurs because of sensory and emotional overload, 122 00:14:14,000 --> 00:14:18,000 and that occurs when you don't have your needs met. 123 00:14:18,000 --> 00:14:23,000 So it's just missing the point. 124 00:14:23,000 --> 00:14:31,000 So blatantly missing the point, and I cannot believe we are still talking about this in the year 2024, 125 00:14:31,000 --> 00:14:37,000 that this article was published at the end of the year 2023. 126 00:14:37,000 --> 00:14:46,000 So anyways, I think I'm just gonna spare everybody more quotes from this garbage. 127 00:14:46,000 --> 00:14:55,000 If you wanna read this full thing, it is called... It's on the San Francisco Chronicle website. 128 00:14:55,000 --> 00:15:00,000 It's on the non-paid version. I don't know. 129 00:15:00,000 --> 00:15:05,000 If they get enough pushback from this, they might end up putting it behind the paywall. 130 00:15:05,000 --> 00:15:09,000 For now, it's on the unpaid version. It's under science. 131 00:15:09,000 --> 00:15:14,000 It says what we know about autism and how to treat it could change after a new UCSF study, 132 00:15:14,000 --> 00:15:21,000 because apparently just making society more accommodating to autistic people isn't an option. 133 00:15:21,000 --> 00:15:26,000 You have to treat or eliminate the disability. 134 00:15:26,000 --> 00:15:40,000 I can't even begin to just... I don't even know where to start with how much ableism is involved in that. 135 00:15:40,000 --> 00:15:47,000 And if that's not blatantly ableist, if you don't understand a blatantly ableist with that mentality, 136 00:15:47,000 --> 00:15:53,000 I encourage you to maybe check out my previous episodes, the first few episodes I've done on this podcast, 137 00:15:53,000 --> 00:15:57,000 particularly episode 1 and episode 12. 138 00:15:57,000 --> 00:16:03,000 Aside from that, I don't really know. I don't have anything to say about that. 139 00:16:03,000 --> 00:16:09,000 This is just garbage, this whole article, this whole mentality. 140 00:16:09,000 --> 00:16:11,000 Just make society more... 141 00:16:11,000 --> 00:16:23,000 If we spent as much energy and effort and money on making society more accommodating to disabled people, 142 00:16:23,000 --> 00:16:32,000 as we do on these studies about genes and mutations and, oh my god, how can we make people less autistic, 143 00:16:32,000 --> 00:16:41,000 we would have such a better world, we wouldn't even have the need for me to be advocating so hard about this stuff, 144 00:16:41,000 --> 00:16:49,000 because we would have more acceptance. And so they finished the article. 145 00:16:49,000 --> 00:16:54,000 Oh my god, okay, these findings could lead to new drugs for patients. 146 00:16:54,000 --> 00:16:55,000 Okay. 147 00:16:55,000 --> 00:17:02,000 We're shining a brand new light on autism. 148 00:17:02,000 --> 00:17:06,000 Yeah, like treating it like a disease, like as if this were fucking cancer. 149 00:17:06,000 --> 00:17:12,000 Yeah, like you're... oh Jesus, I can't eat them. I'm sorry. 150 00:17:12,000 --> 00:17:19,000 I'm gonna put, and I'm gonna remember to put a little explicit. 151 00:17:19,000 --> 00:17:25,000 I can on this episode because I'm just letting the... I'm letting it all out today. 152 00:17:25,000 --> 00:17:30,000 I'm letting all this wearing out, because this is just infuriating to me. 153 00:17:30,000 --> 00:17:39,000 I don't know if I made a lot of sense in this episode in classic autistic ADHD style. 154 00:17:39,000 --> 00:17:46,000 I went on different tangents and different directions. 155 00:17:46,000 --> 00:17:54,000 So I hope people were still able to understand the points I was making. 156 00:17:54,000 --> 00:18:03,000 I just really wanted to make this episode because I really wanted to call out this article and how problematic it is. 157 00:18:03,000 --> 00:18:09,000 Thank you for listening. If you've listened this far into the podcast, 158 00:18:09,000 --> 00:18:16,000 this was definitely one of my most animated episodes, if not my most animated episodes so far, 159 00:18:16,000 --> 00:18:22,000 but I just wanted to let the raw emotions and frustration flow for this one. 160 00:18:22,000 --> 00:18:26,000 And once again, thank you for listening. I hope you enjoyed this. 161 00:18:26,000 --> 00:18:40,000 I'm gonna leave you with a little bit of a break about something out of it, and I'll see you next time.