ASM170 Social Media and Diagnosing Autism

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social media and diagnosing autism all that and more on this week's episode of ask science mike [Music] welcome to ask science mike the weekly podcast where i answer your questions about science faith in life i'm your host mike mccarg a completely unqualified author and podcaster who reads a lot of books and has had a lot of life experiences and that's what this show is about honoring your questions with dignity instead of my completely unqualified answer it's been a while but we're back so what do you say we do a show our first question comes from email and it reads sai mai it says s c i capital m i exclamation point so i guess that's psi my short for science mike i assume anyway uh simoni is everything okay it seems like you aren't on social media much anymore watching you on different podcasts i'm catching bits and pieces as well that you seem to be concerned about social media in general we miss you please come back yes that is a that's a completely valid observation that i have uh not been on social media as much and which to say not as much means almost completely not at all i have noticed if i look at all the needles of of my work the combination of not running a site's mic regularly and not posting on social media slows a lot of things down a lot less people reach out and try to book me to speak for example or um you know fewer patrons sign up fewer people sign up for my email list all those things really really slow down uh when i'm not on social media and uh and not podcasting um but you know i've been in trauma therapy as uh regular listeners know and i've just needed a little space for myself uh i'm a lot more sensitive than normal so really any kind of critical tweet um directed at me or someone else really upsets me right now um social media therefore can take me to some very very dark places because i just i start feeling overwhelmed and so to make sure that i can be a science mic for years and decades to come i've just kind of stepped off the the wheel um if i get on social media i post something and i don't really look at what anyone says back i just kind of tweet and and leave um or if i have you know questions for my book i put it on facebook and see what comes back and um yeah so you're right i have not been around on social media but it's not just my mental health i'm having a larger research project i guess on social media in general i've gotten really concerned about the impact social media has on our society and on people's mental health which is strange because i was an early social media adopter even pre facebook pre myspace uh the very earliest social media platforms i was a member and certainly when myspace came around i hopped on my space and some of you probably have never even heard of myspace because you're younger than i am and then i you know had an early facebook account i was on twitter really early my twitter user number's pretty low first year twitter was operational i was on it so uh i've always loved social media for really specific reasons social media allows us to connect with other people in pretty unique ways especially if you have a view or some point of identity that's outside the boundaries of your local community so kind of contemporaneously i would think about the ex-evangelical community on twitter those are people who grew up in the evangelical church who have felt estranged from it and in many cases that has put them in a state of kind of vulnerability not the good kind of vulnerability with their friends and family and so the ex-evangelical hashtag and the corresponding community allows them to connect with other people online for a sense of belonging and support and that's really good and i know that personally years ago i went to a two days with rob bell conference where it was the first time i admitted i didn't believe in god anymore and the 50 people are at that conference formed a facebook group and that facebook group was like my lifeline for years like that was the only place i really felt a sense of belonging and community and where i could be myself and not be judged that's good i think that's good for society and i definitely think that's good for mental health this ability that social media has to connect us with other people it also lets us learn from other perspectives i am a voracious reader and i would say i've probably learned more about um lgbtq justice and equality racial justice um the the issues and challenges indigenous and first nations people uh come up against in united's the united states and around the world i've learned more from social media on those things than i have from reading books and the books i've read a lot of them have found from recommendations of people on social media so that's really valuable this ability for us to learn from other perspectives and then honestly those two things are incredibly valuable but my favorite thing about social media is that the humor this kind of nested recursive an inside joke stacked on itself a thousand times a style of humor and irony and sarcasm and wit that we find on social media i just love i get on social media sometimes and just go beyond giggling to just absolutely uh i don't know what's what's the laugh version of a sob where you're laughing so hard your eyes are watering and uh your stomach hurts but i laugh that hard at some things i see on social media uh platforms and i think that's great you know there's more there's more i mean uh out of those things you get black twitter you get black lives matter you get me too you get all these incredible forms of advocacy that raise public awareness and result in real change those are good things those are good things without qualification so uh i can't say that social media is bad because there's so many good things from social media but i can still say that social media is a cause for concern for me and there's a few reasons one is that all the big players in social media today are giant multinational corporations facebook is a massive publicly traded company and they also own instagram and other platforms as well and then twitter is a giant multinational corporation and they all come from this kind of silicon valley pseudo-libertarian uh framework and that means that when black twitter does amazing culturally shaping work white dudes in silicon valley monetize it i'm not comfortable with that i'm not comfortable with the degree to which our both our attention and our personal data are commodified and sold i i don't think that's a good or healthy economic structure you know mark zuckerberg just had an op-ed where he defended facebook's business model but i think if you look at facebook's business model through the lens of behavioral economics it's a bad incentive structure it creates bad behavior for facebook and creates bad behaviors for facebook users why because in their never-ending quest for growth every quarter social media companies are always trying to capture more and more of our attention so they can gather more and more of our personal data to sell to more and more advertising companies and that means what we see on twitter and facebook and instagram and other social platforms is whatever machines calculate will keep us the most engaged and ideally compulsively engaged facebook and twitter are more successful if you can't help but pick up your phone and check for the latest thing and they employ ui designers and they employ game theory experts and gamification experts who understand how to create compulsive behavioral loops in humans those are intentional architectural decisions in these platforms and that concerns me that concerns me deeply i don't trust giant multinational corporations to do right by the public i just don't we're also finding in psychology that social media makes it very easy to dehumanize others and more social media use is correlated and we're possibly looking at a causal relationship with feelings of increased feelings of anxiety depression and isolation especially when social media is used to replace minutes of face-to-face time as opposed to supplementing it so one of the things we're seeing in research is maybe you eliminate most of the negative effects of social media if you supplement the existing minutes per week you spend face-to-face with friends with social media but many people it's not supplementing it's actually replacing face-to-face time and our brains don't love that our brains are gratified by the presence of another person with facial expressions and body language and uh physical contact is another important thing for human mental health so you know younger generations millennials and post-millennials that have the highest social media use time uh we're finding a very clean connection between more screen time more feelings of depression isolation anxiety even suicidal ideation that concerns me that really concerns me and that's related to that previous point right if you've got machines trying to serve up the juiciest most outrageous viral content morally outrageous content moment by moment every time you hit that phone you get this like whoa really large uh amount of stimulation and your brain loves it because you're a social mammal i'm a social mammal we're all social mammals and your brain can't get enough you know your brain can't get enough uh our brains love gossip for example they really do uh gossip is is kind of a survival mechanism for our species and social media i mean it just feels like a never-ending fire hose of gossip so i've thought about leaving social media completely i mean i've really really thought about it i i've had my uh fingers hovering over the delete key on my science mic facebook page my personal profile and my twitter profile more than once and two things have kept me from leaving one i'd miss all of you i love connecting with you the listeners of this program on social media and two i'm terrified i won't be able to make rent without social media uh when i don't engage regularly with social media it costs me thousands of dollars a month if you can believe that it really does uh the more i tweet uh the better my business does the more i post on facebook the better my business does the more tickets sell to events the more i post because of those algorithms they like regular posters and if if you'll contribute to their attention economy the machines will reward you by showing more people when you're trying to engage in commerce right so if i want to sell tickets to events if i want to sell books if i want to get patrons then i have to pay the piper i have to get on the content treadmill and just keep posting when you don't post for a while and then you post again very few people see what you posted and that's the structure that we're all dealing with right we're being trained by machines how to behave and i don't like that do you see why i'm conflicted there's so many wonderful beautiful things about social media really really incredible things and there are terrifying things dehumanizing things so i've been looking for a long time for some other kind of social media platform that will allow as much of the good in social media with as little of the bad as possible and uh you've seen me kind of make experiments with that we've got a slack group for the liturgists and slack is a platform that companies use to communicate in small teams to replace email and the slack group is a lot of fun but because it's a program built by programmers for people in the tech industry it's not the most accessible way to communicate we have a small but passionate group of users on that slack group who i love to talk with but other people come in and they say i cannot figure this out and they leave so slack slack didn't get us there then we tried a platform called mining networks um and uh mounting networks has a couple of really compelling things but at the end of the day even though you're paying a company to run which the literatures we just pay for it just just to see how it goes uh we're not charging anybody but we we pay for this platform and but another company still owns the data and that really concerns me this corporate ownership of data thing and what can be done with data to people um so mining networks never really took off we've got a patreon page both for ask science mike and the liturgist podcast and uh when i actually get her you know back to posting on that science mike patreon page there's a nice little community there and the patreon page on the liturgist podcast is very active but it doesn't really let you connect with each other it just lets you connect with with us the creators of those programs and we think there's tremendous value with you all connecting to each other there's some unofficial facebook groups out there a lot of variation there's a big literature's community there's a lit singles group that i keep hearing wonderful and scandalous things about so i mean there's there's a lot of things of course we've got official facebook pages and official twitter profiles and all that stuff and i'm just not satisfied with any of it i want a social media platform that isn't owned by any multinational corporation i want a social media platform where there is no algorithm trying to maximize attention that's important to me back in the early days when twitter and facebook were chronologically listed and machines weren't trying to figure out the juiciest content it wasn't so compulsive loop forming it didn't turn into a bad habit on social media so i've wanted a chronological presentation of content that's something i've looked for and i think i have found something there is an open source project called mastodon which is kind of an open source replacement for twitter it's kind of a combination of twitter and email don't let that turn you off i mean email architecturally meaning email is made up of a bunch of servers that talk to each other over a common protocol that's how email works that's why an yahoo.com email can talk to it an gmail.com email they are federated together through a protocol and that's how mastodon works there's different mastodon servers but they can all talk to each other and our mastodon server which just hit 900 people is social.theliturgist.com you can go there you can create an account and you can immediately start connecting with people who listen to the liturgist podcast a significant number of whom also listened to ask science mike i didn't want to start two separate uh communities um i mean if you got if you really want a mass science mic instance i'll create one just let me know but i think we'd probably be okay just sharing the litter just uh mastodon instance so you go there you create an account you pick a name mine is mike so i'm just uh at mike on that server and uh and then you can start talking with people and what's amazing to me is how supportive a community forms immediately on an environment like that so because some of the hostility and negative negativity you see on twitter or facebook i'm just not seeing it on mastodon and so people can talk about deconstruction they can talk about existentialism they can talk about sexuality they can about all the questions that people in the process of deconstruction and faith transition have and some people are on the other side of faith transition and deconstruction and they can share tips from their journey and everyone communicates together and it is i'm telling you it is really quite lovely um and it's not corporate owned i mean the liturgist instance is owned by the liturgist incorporated which is a corporation uh which is owned by myself and michael gunker so those are the shareholders we don't demand uh quarterly reports of growth we don't demand that uh listener information is monetized uh quite the contrary we don't do anything with your mastodon data and won't there's there's no advertising on this platform none do you hear me there's no advertising on this platform um so i've decided it started as an experiment but it's grown enough that's going to be where i do social media from now on so if you want to connect with me and you want to connect with other listeners of ask science mike and the liturgist podcast just head to social.theliturgist.com and create an account you'll be confused at first but people there would love to help you figure out how to use it there's apps for android and ios and there's a web interface there's a lot of ways to use mastodon but you it's got all the capacity connect with others that other social media have you can learn from other people's perspectives there's an incredibly active and thriving lgbtq community on the mastodon fetiverse which is what they call all the mastodon servers put together the fetiverse because they're federated together there's a lot of humor it is very funny but the architecture of the site specifically is designed to make it more difficult to have mass harassment of people it's designed specifically to avoid uh triggering people who have trauma so it's really easy to create content warnings on posts that people use so you can have a platform where people can both ask questions about sexuality who are still trying to figure that out and not have that be just automatically shown to people for whom that would be upsetting right so if you have questions about you know the theology of same-sex marriage that might be a good question for you to ask but that might also really upset a person who is married in a same-sex marriage do you see what i mean that's a tension we often face in community and content warnings really help people be able to ask good natured questions on a road of learning and people not be continuously re-traumatized so i really like it and the players in mastodon there are no multinational corporations with a mastodon instance to my knowledge even if they had one we don't have to talk to them and there's no algorithm generating it so i really really like this i've enjoyed it so far and so now i'm going to announce it you know first here on science mike ultimately we'll talk about it on the liturgist podcast as well and uh i expect that to be a community of thousands of people um but it's not closed that's the that's the big thing about mastodon since it's federated you can talk to anyone on any mastodon server anywhere in the world so kind of your primary community would be other liturgists or assigns mic listeners but you can you can talk to somebody anywhere just by adding after their username what server they're on i know that sounds confusing it'll make a lot of sense if you join us on mastodon so uh if you don't want to type social.thelitus.com because a lot of people can't spell liturgists i get it just go to ask sciencemike.com uh to the show notes on this episode which is episode 170 and you'll have a link right there to join us on mastodon and i'd love to see you there uh i instead of never using social media on mastodon i'm on multiple times a day i follow everyone who follows me uh we've just had a really really great time over there so i'd love to see you on this and see if we can create a healthier form of social media together and heck if we do a good enough job at this maybe other podcasts and other media influencers will start creating their own mastodon instances and maybe just maybe we could make twitter and facebook less powerful in the world i know that i would love to see a black mastodon instance like for all the excellence and vibrance that comes out of black twitter i'd love to see like the root.com or someone like that start a mastodon instance and stop letting silicon valley monetize uh the voices of marginalized people um so it's a little idealistic but what else would you expect from me anyway uh i'd love to see you on mastodon on and i'd love to connect with you and talk with you more [Music] it's that time of year where i'm on the road again so uh let's see this weekend february 1st through february 3rd uh cosmic campfire is happening in chapel hill north carolina really excited about that event we've got an amazing panel there it's going to be a little campfire by the way we're going to do s'mores uh i'll be there for the s'mores there's gonna be karaoke it's not gonna be a normal conference by any means but it is going to be a gathering of you know really insightful scientists and theologians and college dropouts like me [Laughter] talking about the biggest questions that face humanity uh i'd call it practical existentialism because it's we're gonna talk about those questions in ways that impact our life and our living so we'd love to see you at the cosmic campfire you can learn more at cosmiccampfire.party february 10th i'm going to be in atlanta at the first presbyterian church for theo ed which i am like so pumped about because i'm gonna be uh with diana butler bass and pete inns and patrick reyes which are uh three absolutely incredible thinkers that i really shouldn't be on the platform with so if you want to see me drag down the reputations of three reputable people just go to theoed.com and you can you can learn more there and then finally uh in may we've got one more ken min coming up with the liturgist and there are i mean a handful of tickets left there actually it's kind of cool it usually sells out immediately and this one we have had looks like five tickets left so it's may 24th and 26th in ohio california ken is an absolutely incredible event that i halfway hate because it is so psychologically intense but we have seen serious growth and change in men's lives after they attend this event it is uh not your grandfather's men's retreat it's not a pancake breakfast an early bible study this is a a practical way to confront patriarchy in the lives of men it's led by hillary mcbride and then me and michael gunger act as facilitators uh so you know you come hang out with us and uh and we get real and we get real fast so you might learn more about relating to other people as a man than you have ever known before so that's three things i've got coming up and then uh i do also want to mention that you can bring me to talk at any college any church any conference anything you've got going on uh just by going to my website there's a book mike button um you know if you want to bring me to your community uh that is my favorite thing to do the reason i do the podcast is just to get enough of you to invite me to come talk to you that's i just love it uh so if you go to mikemcart.com or ask sciencemike.com and click on speaking you can get information there and of course if you just want to see me somewhere i'm already going just go to sciencemike.com and click on events and you'll get a list of everything i've got happening in the next few months i don't put everything going on uh you know i've got stuff booked in 2020 believe it or not but i wait until you know for three or four months from an event before i put it on that calendar uh so i'd love to see you there and if i'm not coming near you on my listed events you can make that happen just by booking me so see you soon last question on this two question episode i knew these would be really long answers um and this i'll warn you now will be another long answer so hopefully that'll make up for the fewer episodes is that they're a little bit longer anyway here's the question science mike thanks for talking about your journey learning that you have autism i've wondered for years if i might be on the spectrum but i'm a 29 year old queer woman when i look into the testing and diagnosis process it seems oriented towards children and especially toward boys how did you go about getting a diagnosis anything you say will be very helpful much love to you bri bri thanks for this question i get asked a whole lot about autism since i told everyone on this program that i'm autistic i get a lot of cards and letters and i do feel a little unqualified i'm new to the autism community i'm new in my understanding of autism spectrum disorder um and i just wanna start by saying you're really right this is a very complex process uh so i think i'll just give you maybe an autobiographical sketch here of my journey so you can see what applies to you i think that's probably the easiest way to do this so here's what here's what it was like for me for years years and years my wife jenny has told me she thinks i'm on the autism spectrum for years and i would always tell her that was wrong and she can't say that because i thought she was saying it you know out of like a media trope right there's this media trope of kind of intelligent men absent-minded men oh they're autistic they have intellectual superpowers right like that's the that's very much like there's the there's the rain man narrative of a savant gifting of someone who has severe developmental impairment and then there's kind of the other narrative of oh you know bill gates is autistic right and i just don't know that those are helpful tropes in media they erase the incredible diversity of life experiences and presentations of autism in in people they as you've said in your question make maleness identified with autism in a way that makes it difficult for women and girls to be diagnosed with autism so i would always kind of disregard ginny's idea that i could be on the spectrum and uh and then my friend hillary mcbride speculated um as a friend and she made it very clear this was not a professional diagnosis she just speculated she said if you ever consider that you might be on the spectrum and that was weightier because hillary is a phd candidate and a licensed psychotherapist so when hillary said that i went online and i took a bunch of quizzes screening quizzes and i scored highly on all of them so online quizzes cannot diagnose with autism but they can do primitive versions of the kind of screening tests that a psychologist or psychiatrist would use to see if more testing is warranted so i took those tests and scored i mean really really highly on all of them uh and so based on that the next week i went to i googled autism testing centers and i found the one closest to me and i drove to it and i stood at the front door and waited for them to open i didn't have an appointment i just waited for the for them to open i think it was a tuesday morning monday or tuesday morning i don't remember and i remember when i heard the door click they unlocked it i like followed the receptionist in and the first thing i noticed was that the waiting room was full of toys and posters i don't know how you describe like very like the kind of posters you would hang in a school-aged classroom grade school so i was like this is this is weird everything's very colorful so you know the receptionist literally sits down i'm standing at the counter and she says can i help you and i said yes i'd like to be tested for autism um oh no no first anyway she thought i was there about my child and it took a little bit to clarify that i was there by me and then she said well we work with children i'm sorry you know you can go to ucla and ucla is like across the world from me la's a big place um and i did not want to try to drive to ucla or get in touch with someone at ucla so i was about to give up uh when one of the doctors the one psychologist came from the back of the facility and she said excuse me are you science mike so she recognized my voice which was super helpful and i said i was and told her what i was there and she said well going back i'll talk with you so we were talking and you know she's asking me some questions um [Music] she asked me about eye contact i remember she asked me about smells a lot of a lot of stuff that seemed weird to me and then she gave me some tests some little assessments and uh so i took those tests some of which were like you're literally filling out bubbling things and other things are more interactive and we did that for a few hours and then she said that um she couldn't diagnose me with autism because adult diagnosis was outside of her specialty but she could refer me to someone so she then gave me uh an email address and a phone number for another practice uh that was in pasadena so a little further away but not not as far as ucla who specialize in talking to adults and the way that worked is first i just met with one psychologist psychiatrist psychologist like clinical psychiatrist one of the two forgive me i don't remember and that's really important because one of them is like a required role in diagnosing autism in the current version of the dsm but we'll we'll get to that in a second anyway the deal was it's super expensive and in-depth to get a formal autism diagnosis thousands of dollars because in the dsm-5 there there's a panel of people that have to diagnose you under criteria that are around early childhood development so if you're an adult they have to basically go back in time which means they gotta look at your school records from kindergarten and first grade and second grade and pre-k if you've got it they've got to interview potentially interview your parents or people who knew you earlier in life um it can't just be a you know presentation symptoms now especially because if like me you've made it into your 40s undiagnosed you're pretty good at masking autism symptoms right um so the way that worked is there's first conversation about why you want a diagnosis um and then there we would i would just kind of go once a week and just talk to her and we did a few tests at a time that's when i figured out that i have face blindness um which is a whole another story and then at the end of that process you know she'll give you a letter of opinion of whether she believes you have autism or not or or believes you are a candidate it's it's more formally uh the language is more formal than i believe you have autism but basically they they're saying if they were on the panel performing their role would they say yes i think this person has autism or no i don't and then you can take that that block of time you spent with that person and then you can kind of their job is done for what they would do in the panel so then if you want to move to a full diagnosis now that works already done you're not paying twice um so for me that was really helpful and she also told me that most adults don't seek formal diagnosis unless you're like seeking government benefits there's really not a lot of benefit to it and there can potentially be liability to it like so if if you know jenny and i uh got divorced and there was a custody dispute like it would be possible potentially for that diagnosis to be used in those proceedings so um that that's you know a potential note of concern but i didn't want to self-diagnose what so many people in the autism community do which by the way is fine to self-diagnose with autism you don't want to be cavalier about it you don't want to like hear me say i have autism and you also have trouble looking people in the eye and you just assume you're autistic you would want to go in a much more in-depth process than that you would want to look at the specific diagnostic criteria for autism um but many people most adults actually in the autism community self-diagnose but i uh i decided i wanted to do the whole thing um so i kind of nearly emptied out our savings account and uh i did a full the full panel which included a neuroscientist and at the end of that process i got a formal diagnosis of autism spectrum disorder and they did i mean they got records from my elementary school it was a very very in-depth process um and that's what it looked like so and i live in los angeles uh america's only got two mega cities new york and la that's the only two cities in america with uh in their metro greater metro areas with more than 10 million people so there's a lot of resources here depending on where you are in the country there may not be a private practice like i worked with that specializes in diagnosing adults with autism that that might not be available to you at all and if it is available it's super expensive thousands of dollars not hundreds of dollars thousands of dollars i had to know i just had to know i didn't want to publicly identify as autistic without formal diagnosis because i'm a public figure right i feel like the stakes were higher for me than for most people in this identification because so many people as soon as i talk about it are going to hear about it so i want to be really careful and so i went through the the whole process and it is an ordeal it really is so you need to think like why do you want this diagnosis um do i mean are you do you have a level of impairment where you might need uh government assistance if so formal diagnosis can probably help uh if not like consider self-diagnosing or consider seeing if you can find a professional who will do some of the screening tests and then tell you how likely they think it is before you proceed with a full panel or maybe just stop there i think if i if i wasn't an author and a podcaster i would have just stopped uh after i went you know i think it was six weeks uh with the specialist that would have been enough for me i wouldn't need the full panel um but autism it's it's complex it's not fully understood medically at all uh and and every version of the dsm you know tends to revise it i mean before the dsm-5 asperger's and autism spectrum disorder were separate things and now they've been combined based on some findings in neuroscience which is why you need a neuroscientist on a panel and neuroscientists time that doesn't come cheap so i hope that's helpful uh in your process and and what you're thinking about and i hope that's you know i everywhere i go now every single event a half dozen or more people tell me they suspect they might be on the spectrum so for all of you who aren't sure i hope that provides a little clarity and a little insight into what the process is like and whether it's something that you would like to go through whatever whatever you do i'd say just don't be cavalier you know people i think about obsessive-compulsive disorder and people who like things neat will say oh i'm so ocd well you're neat ocd is a very serious and significant mental health condition with specific diagnostic criteria and if you're cavalier with ocd you're kind of erasing the experiences of people who have obsessive-compulsive disorder in the same way when people say oh i'm so autistic casually that minimizes the life experiences of people who actually have autism spectrum disorder so whatever you do i would just say be cautious be careful and be thorough well that's another ask science mic in the books i'd like to thank greg nordine for his amazing work producing this program i'd like to thank andrew golucky for pre-production work and my patrons on patreon so faithfully keeping this show on the air even when i go off the air for mental health if you'd like to join my patrons uh just go to sciencemike.com and click the patreon icon somewhere i've recently been told that patreon is not super easy to find for science mike or the liturgists and that could be because i'm horribly self-conscious whenever i ask you all for money uh but it does help it really does it it makes the work possible um if if the patreon ever dried up i just wouldn't be able to do that science mike anymore uh and as you can see getting back in a rhythm here um probably do every other week until my next book is done then we'll be back to weekly episodes of ask science mike and uh i've missed it this was good i turned on the microphone knowing i'm talking with you all actually felt good this time um so that that's encouraging for me uh towards the end of my last run i guess in november i was feeling this sense of dread every time i came to the podcast i kind of swung this microphone out started to talk dread and fear thank you trauma the trauma therapy is working so uh here is to a healthier me loving all of you and thanks for listening and i'll talk to you next week