Being Autistic, Finding Love, Learning Social Situations ft. DesMephisto

i i know it's maybe sounds weird but the idea of like a sociopath where it becomes all about mimicking the behaviors where you have to put all this thought into like okay i put my arm here this indicates this behavior like all those components into being able to start trying to develop friendships yeah welcome hello um so yeah can you first tell me what you you know what you go by and and how you'd like to be addressed today um dust is fine yes okay i'm all over dr k it's nice to meet you desk nice to meet you as well um thank you very much for you know coming on we appreciate it absolutely um is there something important so can you just tell us a little bit about uh you know i understand you're a streamer so can you tell us a little bit about what kind of what kind of streaming you do and where we can find you uh so yes i i focus a lot on charity um it's it's one of the things that i've really found to just help with my own mental health and in fact one of the things that they recommend is helping others tends to be like that the best way to kind of just deal with your own problems and kind of you know get a lot of that um intrinsic value okay so i've been doing that a lot um you can find me at twitch.tv mephisto i mainly play a lot of world of warcraft uh things like speed running collecting i really really enjoy collecting things that that sense of completion is really satisfying cool thanks a lot and um is there something in particular that you wanted to talk about today des um so really i just want to go ahead and get across what autism is i want to kind of engage with the the community and help create some understanding of um that that concept especially like when i didn't get diagnosed until i was 29 and what i thought autism was growing up as a kid isn't what it turned out to be and then there there's the whole issue of things like aba and there's there's this big charity event going on right now that is uh color the spectrum which i think is sending out a lot of mixed messages about what autism is and is more so hurtful to autistics rather than helpful interesting so um a lot of so okay so that that sounds uh like a great structure des do you mind if i ask you um just throughout this conversation i think a lot of times the way that we try to illustrate things is by asking people sort of like personal questions about their experience of a particular thing whether it be like you know dealing with um you know toxicity and gaming or you know dealing with depression things like that is it okay if i ask you um you know personal questions about what your experience of autism is things like that yes that's completely fine in fact i um recently there was a video that just went viral of a bpd per individual who um was hitting themselves in the head repeatedly after being harassed by a customer and that video gave me the strength to actually post a video of me having an autistic meltdown on stream um so i'm i'm very very open to to answer anything personal or to do that because i see this as a way of helping others yeah and and just you know for clarification if i ever ask you anything that um you don't feel is appropriate or you don't feel comfortable answering you know please just signal that to me in some way if i detect from you that maybe we're talking about things that could be making you uncomfortable i may point it out to you um and you know at the end of the day like we're really here to help people but i don't want you to hurt yourself or sacrifice anything for the sake of the greater good okay if i do so it's it's of my own volition i understand to make a difference pain is kind of necessary at times but it's important to recognize that i choose that not that it's it's something i'm unwilling of yeah that's a that's a pretty profound statement that pain is necessary sometimes to make a difference can you help me understand that um being like like being open about autism like using my life as a kind of open book to help others one of the things that i've enjoyed most about streaming is having um individuals who didn't realize they themselves were autistic and after saying and hearing my story and everything that i talked about make that connection they go and see a therapist they go through the practice and then they get diagnosed themselves right it's it puts you in these positions where you know i really wish i didn't have to open up about this but it really also at the same time helps a lot of people what makes you not want to open up about it um it's it's it's there is a lot of negativity that can come from these things i mean for example the the sharing the the video of myself having an autistic meltdown where i i repeatedly punched myself in the head it's it's scary right it's a scary thing to witness it's something that could potentially make future job opportunities impossible and i understand though that these things have value and that they can help others and like it it's the hard thing where i know i can handle it i know that if things go bad i can at least i'm sure i can find a way to recover from it whereas go ahead i was just going to say so you've mentioned autistic breakdown or meltdown a couple of times now and and apparently you were um you know hitting yourself can you help us understand what you mean by that term so an autistic meltdown is i would say in some ways it's similar to like the the common understanding of a meltdown in a neurotypical individual where everything is at its absolute worst um in that you can't really process anything going on um at least to my understanding and for myself basically it's like everything ceases to function the brain goes straight into the fight or flight system but it doesn't have a way to channel it so everything just kind of blows up and as a result i i can't think i can't function one of the the negative stems that i have to tends to just be punching myself in the head because i'm so overwhelmed um it's taken a lot of practice and a lot of awareness to to be able to recognize the only way that i can stop these things is to be aware that i've reached the point of that i'm going to be overwhelmed sooner rather than when it already happens so it requires a great deal of self-awareness to avoid these situations and can you share at all like what your experience of being in in a meltdown is like it's it's it's like it's it's almost like i guess a panic attack well maybe not a panic attack but it's it's a blur right so like i i don't really have any cognitive processing over what's going on i don't really understand what's happening um it it just it it is yeah and yeah it's it's really hard to like know what's going on in those moments um i try to basically it's it's i don't want to say it's quite like drowning but i do feel like there's these little moments where i can get that little breath of air to try and move myself away from it so of course sorry no go for it um and of course like like the the better i get at it the more i can kind of shut those feelings down which would result in a shutdown which is kind of like it's it's like a momentary to pre well i wouldn't call it momentary but it's it's like this this depression or this this weighted blanket this sinking feeling where everything just becomes super muted um usually if i into that i'm i'm out for like two three four hours i'll just end up passing out yeah so uh you know it's interesting because what i'm hearing from you is that you know it takes a lot of awareness to manage you know preventing a meltdown but that when you're actually in the meltdown you sort of lose yourself yes um and and you know sometimes on on stream we'll kind of joke a little bit about becoming an anger elemental where like your your personhood becomes like dominated by a particular emotion and then like some people will be like anger personified or shame personified and you sort of become like a shame elemental and when i'm sort of hearing from you just like i'm trying to put myself kind of in your shoes it's that like you are no longer there and you're just dominated or overwhelmed you don't have particular cognitions or thought processes it sounds like there's a lot of emotion that you're experiencing that's quite negative and you're not really in control of your behaviors necessarily either and that you kind of like well it almost reminds me a little bit of of what i think about kind of physiologically as like like a seizure actually so you get this high state of hyper excitation of electrical signal followed by this refractory period where everything kind of shuts down and yeah and it and it's really yeah you wanted to say something sorry oh no no yeah that's that's very yes um and so can you tell us des a little bit about like you said you were diagnosed at the age of 29 and and you know what growing up was like what you understood autism to be um did you recognize in some way that you may not have been neurotypical or how did you understand that sure um so in retrospect like looking back years later especially after my diagnosis my my uncle um is mentally challenged and also likely undiagnosed with autism um i had kind of put myself through through my own version of aba as a kid growing up because i saw the way he was treated um my he was yelled at he was kind of shamed he was dismissed he would have love withheld from him based on his behaviors so every time i saw him walking back and forth i did everything i could to um to avoid displaying those behaviors if you know the the sound of a spoon on a ceramic bowl was painful to my ears i would just grin and bear it because i didn't want to display his behavioral characteristics and be treated the the same way um and go ahead yeah sorry i i keep interrupting you um it's okay so i'm just so curious what were the behaviors that you noticed in your uncle that you didn't want to duplicate so so the the rocking back and forth the specific um uh reaction that sounds the way that he interpreted or interacted with problems um and of course that that even then extended into um excitement so like things like christmas i began to immediately mute that behavior as well so instead of being excited about christmas i was like oh it's just christmas and i did this at a very young age because i i didn't want any of those associated behaviors which is i i think what resulted in just a lot of knowing and unknowing masking growing up as a kid i was originally diagnosed with adhd in third grade and then i i always knew something was wrong i just didn't understand what was wrong um the best way i could describe it is i always kind of felt like everyone knew something i didn't know like i i don't know how to like like fully explain that but i always felt like i always just knew something was wrong and it wasn't until like i i graduated um college that i started to experience um what is known as autistic burnout where i lost a lot of my masking and abilities to kind of do things things like driving became hotter um my um i that's when i ended up getting diagnosed with ocd pure o because i was having a lot of intrusive thoughts very obsessive um my anxiety started shooting through the roof um basically all the the kind of coping mechanisms that i had learned how to deal with throughout life they all came crashing down which ended up leading to the autism diagnosis and then you mentioned that um you know you started like muting or masking particular behaviors it sounds like that's a pretty like subconscious process is that fair to say uh it was both conscious and subconscious um i mean i i would probably uh equate it to um like instead of being the person to to touch a hot stove to be like oh that's hot i used others to learn that so if i saw someone else treat it a certain way i was like okay i'm not going to be act that way because i don't want to be treated that way um honestly i'd say that was kind of like a lot of how i learned things was i had to study other people to understand those behaviors yeah um so let me do you mind explaining what aba is because some people aren't familiar with that um so aba is a psychological practice it's a therapy where behaviors that are considered undesirable are replaced with behaviors that are considered desirable it is i wouldn't say basically like dog training but very similar um that that idea of like say if you wanted to get a person to make eye contact you you they used to be that you would punish them if they didn't make eye contact now that they they prefer kind of just uh reward reinforcement although at the same time there's a lot of question well not a lot of questions it's mostly an unethical practice what um okay so let's let's take sort of like i'm gonna table some of the stuff about aba color the spectrum things like that i think um des it's very helpful i personally am learning a lot talking to you and i'd love to just hear more of your raw experience because i i think you know rather than using like terms and stuff which we can definitely get to i think that the is like you said a lot of people with autism feel like you know everyone else is watching a movie with the volume on and like you can tell like you're still watching the movie so you kind of know what's going on like you can kind of enjoy what's going on but it seems like there's something that other people are sort of getting that you don't seem to have access to i think that's that is such a good and in some ways it's also devastating to kind of hear people talk like that but when i when i work with people with autism like i think that's such a beautiful way to describe their experience it's sort of like you know some people just seem to know things that i don't know i don't know exactly what i'm missing because you can try to be like calculating about it right like you can kind of say like okay well it's clearly not like you know i can hear things and they can hear things it's just things seem to affect me differently or other people things seem easier for other people and i don't know why this has to be so hard for me um those are kinds of the sentiments that i've kind of come away with what do you think yes i absolutely agree with that uh like just everything growing up like making friends interacting in school the interactions teachers like all these individual components every single aspect felt like a struggle because i couldn't i couldn't connect i i struggled to start making friends until i was 21 22 and the way i went about it was i sat down with a therapist and i told my plan that i was gonna go to bars i was going to sit there and i was just going to observe like i wouldn't have a phone or anything i would just sit there and watch everyone to the point that i would become so bored that the the act of talking with someone would kind of at least compensate for the fear of interaction to some degree as well but also in that time i'd be watching you know how the body language displayed what topics were they discussing you know how how did they interact you know like all these little components i observed all that to try and replicate um like i know it maybe sounds weird but the idea of like a sociopath where it becomes all about mimicking the behaviors where you have to put all this thought into like okay i put my arm here this indicates this behavior like all those components into being able to start trying to develop friendships yeah it sounds quite labor-intensive and is it okay if i ask you one or two more questions about your uncle yes i i don't want to go too too personal on my uncle since he's not me and sure totally understand so so this um uh i'll also you know let me know i'm i'm asking for permission for a reason so let me know if we skirt that boundary but what i'd like to understand is like you know are there particular experiences that see so it sounds to me like you noticed that your uncle behaved in certain ways that maybe you shared certain tendencies with him and then you started to mask or mute those behaviors did i understand that correctly yes and i was wondering if you could just illustrate for us like an experience that you had where you saw something and then you recognized like oh i shouldn't actually act like that um the one that oddly like the one that stands on my mind the most which is silly um was literally how he held a fork uh my my grandma yelled at him something fierce like like just just chewed him out of like we were having dinner and just the way that he held a fork um because like he would hold the fork like with his fist rather than like that and that that just it's forever burned in my memory um i remember things like kim complaining about the noises sound and everyone just doubling down on that sound so that like they all started doing it like like those little components and seeing how how they were how he was kind of treated was like i i don't remember everything since it was this this is like i but those those are like two of the things that are really just burned into my memory yeah i i think that's that was exactly sort of what i was looking for when i asked the question because i think a lot of times i'm trying to imagine that i'm like a 15 year old autistic kid right now or a kid with autism depending on you know what what's the appropriate way to describe it um and i think the challenge is that like you know when we use technical terms like it doesn't actually capture people's experience and and i think the way that you're kind of describing that like there are these particular things which seem like a little bit you know unique or idiosyncratic but then a lot of people like really you know punish people for being a little bit different um or they don't it's just so foreign to understand that like um or have you ever heard of misophonia no so it's interesting so there's some correlation potentially between i i don't know if there's some correlation but misophony is actually like a a neurological illness or disorder where benign sounds cause people like excruciating pain and what i'm hearing from you is that that there are particular sounds which feel very like almost painful to you and it reminds me of actually misophonia but um yeah so thank you for sharing that because i think that really illustrates it and and what did you notice about yourself that was different one of the major things well it's one of those things like looking back on it now that you noticed that it was different but like for example always wearing a beanie i've always been wearing shorts um i think i got diagnosed with sensory processing processing disorder fairly early on um i i vaguely remember going to therapy for it uh but it's it's more of these things where you look back and you start to realize when you're growing up as a kid you don't necessarily necessarily think you know oh this is wrong it's why is this so hard why why is it so easy for everyone else why can't i accomplish what they're accomplishing it's hard to realize like i i didn't grow up in the the best of households and for me while growing up through that i thought that was normal it wasn't until you know even when like visiting other places where it was much nicer and everything i like that was the abnormality to me it wasn't until i grew up and you know met my wife and i started to realize like oh that's this this isn't normal and so it's it's kind of that that uh you don't really notice it when you're in there um i kind of forgot the question though that's totally cool i i i loved your answer um so let me just ask a different one what what uh what was growing up like for you it was hard um it was it was hard uh friendships were really difficult the friendships that i did make often resulted in harm to myself so um people who i hung out with would end up abusing me um like i i would i'd been hidden in the head with a shovel a razor scooter punched in the head repeatedly um i i even i haven't had one instance and this this isn't a pc gamer article so it's it's um but i was even pissed on at one point um and these were people that i considered friends because you know they they interacted with me and that was that was rough um i actually caught a bit of asthma gold's interview and i could even relate to some of what he was talking about well he specifically referenced it as laziness i.e if a light bulb goes off in a room he he was oh i just won't use that room anymore um that's kind of the household that i grew up in so like if our our sink stopped working we we just used the bathroom sink instead so there was a point of time where there was like five or seven years where um our our kitchen sink just wasn't used yeah it's it it was rough how does it feel to talk about things like that yes honestly it feels it feels like past trauma right where like i i went through this i've talked with with normal like not normal numerous therapists about my experiences growing up as a kid that kind of like trauma and stuff and it it is what it is it happened it sucks but focus on the now yeah yeah i can sort of i can sort of detect your um the imprint of therapy and all the work that you've done in the way that you talk about it you know i i think that there's i'm hearing a lot of acceptance i'm not hearing a whole lot of excuses or defensiveness um which is which is interesting because a lot of times you know when people will talk about their upbringing and like or the negative things that potentially their parents or loved ones used to do there will be a lot of like caveats excuses you know balancing the equation oh my parents did love me a lot things like that you know and and i'm not really hearing a whole lot of that from you which doesn't you know i'm not getting the sense that your parents were um abusive or neglectful i mean maybe they were but like you know i'm not i'm not i think it's it sounds like there were just a lot of challenges in the household you know it sounds like some of your caregivers could have done a better job it's definitely one of those tough things my mom she single mom all that my my father uh who i actually finally got to meet for the first time when i turned 30 which was interesting um he was he was in prison and stuff so it's you know it is what it is it's best to focus on the now because like you can't do anything to fix the pass you can do plenty to fix the present yeah what i'm hearing is that you kind of spawned in a rough location that that puts it well yeah actually [Laughter] didn't really get a winning spawn there but but you got to play from it right like wherever you spawned you got to you know you got to work with it absolutely and i i feel i am plus i mean i feel like where where i spawned uh resulted in me doing a lot of good yeah i mean hell we've we've raised over 50 000 for charity since i've started streaming which is just wow that's amazing man like i never thought someone someone like me would be able to do so much good and who is someone like you disabled like struggling like i've always struggled to do full-time employment that kind of thing but i've always just you know i never felt like i could connect or fit in or do anything and to suddenly be able to be like oh no actually you found a place where things are working and you're actually doing a really good job at it it it really changes it's one of the things i love about twitch right where in a lot of instances where you struggle in the world real world especially as a disabled individual to finally find a platform where your disability isn't as much of a limiter as it is in reality i mean streaming is reality but you like the the real world so to speak yeah i think there's a lot of interesting philosophical points there about you know what's the real world what isn't i'm curious um how do you feel about the term disabled uh i'm i'm personally fine with it i i i understand that there's some some backlash around the the word and everything but i mean it's hard not to refer to it as a disability because i feel like it limits me in so many ways going for my master's program that was a nightmare and academia in general for for those of us with with disabilities is almost an impossibility and then adding in covet into it and i was completely wrecked i i couldn't even i i finished my master's program with the 4.0 but i couldn't finish writing my thesis because everything changed and i just it was like there it just slipped through my hands interesting what what's made it hard can you help us understand like you said you've struggled to maintain full-time employment what's made that hard um a lot of it is focusing and maintaining a lot of the interactions the the social interactions everything that goes in at work understanding like the the the hierarchy and the systems that are there and the clerks and the groups in office politics that's what they're called like like navigating through all that was it basically felt impossible um there are certain tasks that you're expected to be able to complete like talking on a phone um i've learned ways around it but it's difficult still i really really really really hate phones i do not like phones they are such a just overwhelming sensory especially phones ringing and then of course you know like like sometimes because a lot of workplaces they don't give you you space you're all kind of in like uh enclosed so things like um like i used to have a a co-worker who would like spam click their mouse to activate their computer they're just like click click click click click i could not get any work done i would have i would have noise cancelling headphones and everything or you know people come up behind you start having full count conversations there are so many components in a workplace that you know neurotypicals or just normal individuals would be like oh whatever like oh i can just cancel that i i can't um and there there's also like when when i reach these points of where i'm completely overwhelmed like hey if i keep pushing myself i'm going to have a meltdown work tends to not be a place where you can go ahead and get the flexibility necessary for that um and that that's again one of the things that i love about streaming is it's like hey i've reached i'm like nearing that point where i'm overwhelmed i'm going to have a meltdown and i can just stop like it's sorry go ahead and i don't know i was gonna say have you played darkest dungeon i have not i've always wanted to but i i've never actually started it it's interesting because here i've never used a darkest dungeon analogy on stream before but hearing kind of like your workplace environment like i don't know if you are familiar with the mechanics but you know you have an hp pool like any other rpg and then like essentially magic does stress damage and so this is like a reverse hp pool where like it goes from zero to 200 and if you hit 200 you die and then like once you hit 100 like your character gets like a pretty significant debuff what i'm almost hearing from you is that there's like this stress like it's just like darkest dungeon where there's stuff that like racks up your stress and then if it hits a certain point like you have a meltdown and you can even kind of use a lot of your like cognitive energy or mana pool to like suppress or like kind of keep that stuff buried but it's still like building up in the background and if you force yourself into these situations you can kind of last for some amount of time but i it sounds like you know that meltdown or burnout as you mentioned you mentioned something about like coping mechanism burn out um i i forget what the term you used but you said that you had like the all of your autistic burnout yeah um and and so it's it's bizarre but that's kind of what i'm hearing is that kind of fair that like you could manage it for a while but it really wouldn't get better and then you sort of it was too much for you to handle yes i think that's a good comparison um specifically like it it's we can kind of push ourselves and this is one of the things that i had to learn in my my master's program is how often i had to say no because if we push ourselves like i i don't like hitting myself in the head like it's it's one it's it's not a pretty thing to see and two it's not very good for myself and so i i had to start learning to say no more often even though like i wanted right like i wanted to play everything i wanted to get my master's degree i wanted to to succeed in academia i i understood that i i had to just stop otherwise like it would just get worse and worse and these these meltdowns like the the more i have them the more i push myself the the worse that it would get yeah des what's it like to want something so much and not be able to do it it sucks um i think we can all kind of relate to that um but i think it's also something that we all have to come to terms with that the the notion that we can become anything isn't a reality and that sometimes it's best to pay attention to what we can do and to strengthen that rather than climb an impossible wall and i know that i i can you know get my masters i can get my doctorates but it's going to be about finding um finding a program and thing that works with me desk bro i think how did you learn that because i think like 99 of people out there like arguably myself included you know have trouble learning the lesson of like i want this so much but i may not be able to get it how do you believe me acceptance believe me once you punch yourself in the head enough times you learn [Laughter] um seriously though like like when when you reach those points where you you feel yourself breaking you realize something's going to to give right and i i think that's kind of one of the at least the the positive things is um learning that it was like i can't keep doing this i got to find another way the best way to describe my experiences is it's like trying to kool-aid man through a bunch of walls and eventually you can't kool-aid through the wall so you have to find a way around it yeah and yeah beautifully sad yes you know it's it's also kind of interesting let me just think about this because you mentioned the cycle which i think is really important to understand um which is like you know once you kool-aid man through a wall or or you know once you fail it's something that you really want it actually causes you to try to kool-aid your way through more walls right you dig deeper there's some amount of shame there's some amount of lack of acceptance there's some amount of attachment and wanting it that you kind of like you like burn out even more like you try even harder you dig deeper you push yourself more because that's what we're sort of taught to do right like don't ever give up and where there's a will there's a way and then so then what happens is and the the crazy thing is that you can kool-aid your way through a wall right you can smash through things by digging deep and then what happens is people like they dig deep and then they like they do it they sort of succeed even though they're like cannibalizing themselves from the inside and then they say okay this works right because then they've been able to do it and then they got what they wanted and they're sort of not really paying attention to the cost and then they think to themselves oh i can do this this is possible and that's almost what i find to be like the most damning thing because it's sort of like yeah it's possible but what did you have to pay you know what's the price that you pay to get to where you are and then if they fail again the whole cycle repeats and they're like oh if i had dug deeper if i had sacrificed more if i had done more if i wasn't just so messed up like if if all of these things and then like the cycle repeats and it repeats and repeats and what i'm curious about is you know when when you are able to push yourself and actually accomplish things and then like when you fail and you sort of like how did you get get out of that cycle you know like because i i can sort of see it going both ways one which is like you need to do better if you did better you could do it versus recognizing oh actually like maybe i can't do that yeah it's it's it's really hard to say honestly the best way like the the past ever since the diagnosis which is it's been almost four years now i feel especially like every well honestly the past five years have been a blur like ever since i graduated college everything's just kind of it's it's i don't know like the the the ability to grasp like what's happened feels less tangible than it did when i was younger but what i do know is each time i reach the breaking point each time i hit a wall um it got harder and harder to kind of break through and to keep going and i i know that eventually i was it was hurting myself to to just bash into the wall and so i had to i had to start thinking about it more critically i had to look at the wall and you know sometimes there there actually happens to be a door right next to the wall sometimes i sometimes i have to to you know maybe get scaling gear or you know whatever their various option because i was literally like i was literally killing myself so to speak by constantly running into these walls i think one of the the things that makes it more apparent for those of us with disabilities is that we run into them more frequently which the more frequently that you run into it you're going to be more aware yeah whereas if it happens like you know every six months every year you might fall into that same trap where you you i just gotta dig deeper i just gotta dig deeper so i really think that contributed a lot is that it's that when you have these problems you run into them more frequently and you learn faster so to speak yeah that's it's so wise and also a little bit damning because kind of what i'm hearing for your answer is like you know oh des like how did you guys you know figure out how to wipe rag i mean how to down ragnaros and it's like yeah i wiped a whole lot like other people may wipe every six months to a year but i wiped like once a week and and it's really hard to say but to listen to and to really think about but i i do think that there's a lot of value to sort of like recognizing that maybe you're just like more experienced at wiping and and i don't know what that means for people who are neurotypical who encounter things less frequently but i'm certainly detecting a lot of like you know awareness on your part and and critical thinking and sort of recognizing who you are accepting yourself for who you are um separating out maybe what you should be from what you are and i think in in some ways it sounds like you started that process very young because you noticed when you were young that like you were different from other people absolutely um what have been how did you feel about getting an autism diagnosis or what was that like for you to get diagnosed with autism it was a major relief to be honest um it was it was a struggle uh the the therapist and kind of everything they don't like diagnosing adults i was autistic um they they don't really see or at least my therapist didn't really see that the resources were useful to diagnosing an autistic adult um that you were seen as like taking resources away from autistic children that that's something that could be you know benefiting someone that they could help because once you're an adult there's there's no support network there's nothing that can really be done um which is part of what led me into charity because that's that's literally horrifying to realize okay you invest so heavily in autistic children and then it's just like well it's someone else's problem now right it's like building a beautiful garden and it's like ah we'll let the weeds take over right like it just it makes no sense so getting that diagnosis not only gave me ease of mind and understanding of who i was but it also connected me with the autistic community being able to connect with other autistics that have had similar experiences to be able to to be a part of a network where i finally felt a sense of belonging which like i i think a lot of that that um that psychological usefulness is missed in these diagnosis because they're there's it's super important it's really important to be able to have that connection to have that belonging to know that you're not alone to go from feeling like there there's no one else like you no one else going through the problems that you're going through to someone like holy [ __ ] there's there's other people out there that that understand yeah sounds like you had felt alone for a long time and now i'm sort of hearing you say a lot about being able to connect to other people but i other people i've worked with have also sort of emphasized that they had a reason for why things were that the way they were right because people like my experience with people with autism just listening to them is they just feel so broken like arbitrarily because it's not there isn't like a diagnosis or reason or rhyme like you're just you're just bad at making friends there's like something fundamentally busted and you just suck at it there's no like explanation there's no reason there's no like you know and and and for some people who get an autism diagnosis they sort of understand that what i have always experienced which is that it's hard for me to live life like neurotypical people do actually has like a neurological or neuroscientific correlation to it there are parts of my brain that literally function in a different way from like what a neurotypical person's brain functions like and so it's not like some kind of moral deficiency or being weak or just sucking or like a charisma stat that's like low it's that you're wired differently did that sort of have an impact for you in that way or was it mostly about connection uh no definitely like finally having that answer and understanding um absolutely like i focus on the connection because i i think that's a really important thing because i i think many of us with autism we desperately want social connection that was like one of the big misunderstandings that i had about autism before getting my diagnosis was that if if you wanted to have friends if you wanted that social interaction that you couldn't be autistic because autistics weren't weren't sociable which it's simply not the case and there was there was like a lot of these kind of um this misinformation out there that i had to search through to better understand what autism was when i went to seek my my diagnosis and and can you help us understand a little bit about the sort of this i can imagine it's tricky because on the one hand it can be hard to make social connections and wanting social connections and what it's like kind of swimming through those waters a lot of it like one of the big things that i struggled with growing up as a kid is noticing when i was being annoying right like i would talk about something i'm very passionate about something that i care about and realizing that the other person was annoyed bored or whatever in trying to like now now like i have all this anxiety and i'm like i'm constantly watching like facial interactions i'm watching body language like there's this huge anxiety where i'm like okay i need to change the subject to the point that even even if someone is enjoying the conversation i'm ready to jump that like that conversation like wait i've been talking about this for three four or five minutes okay i need to change subject even if they are liking it because it's it's almost like the script that plays in my head um yeah like like a lot of those that kind of like trying to figure it out was just it was constant like okay i didn't get the reaction i wanted or okay this didn't happen the way it was try again let's change one thing i mean i i definitely relied on science on like things like scientific method to to be able to go and experiment and like okay we'll try this one little tweak we'll try this week we'll try this tweak until i ended up with a script that was somewhat successful yeah it sounds very intensive from an energy standpoint yes it's it can be exhausting yeah and and that you know once you came up with your algorithm that like even if the conversation organically didn't require a shift there's a part of your brain that has learned that after four minutes about talking about a subject the safest thing to do is to switch the subject yes yeah and but really and i i know you use the term sociopathic but i i think um you know i think that somewhat apples and oranges but i am hearing a lot that you make like a lot of your social interactions are calculated and and not out of a desire to like take advantage of anyone but just because i i think what i'm also hearing from you and this is my experience working with people with autism is that you know some of the empathic circuitry that allows people to like naturally like know how to swim is is not quite intact and so you have to rely you have to figure out other ways i i just had another analogy which maybe is devastating and offensive but sort of like a duck without feathers you're still a duck but like some of the things that you normally allow you to float like you have to learn how to like swim in a different way and and so it sounds it sounds really tough man yeah you mentioned specifically about not trying to take advantage of others i growing up before i knew i was autistic that was one of the big things that i dealt with a lot was um like because of how i approached everything and thinking about it to try and elicit specific responses i i like i had this this big fear that i was deliberately trying to take advantage of people right because it was literally how i had to solve all of my problems like i had to do this like this this component that came so natural to everyone else i had to go all this deliberate and like thinking about each of these components where i literally felt like i was manipulating others and it it sucked it definitely had a huge kind of negative mental toll i can completely understand that i think unfortunately um you know that's not necessarily the case and i've i've met um a ton of people who are very emotionally like not overly cognitive and at the same time are also incredibly manipulative like it's not that thinking very cognitively about social interactions makes you manipulative or not i've seen you know both versions of that and and des i'm curious you mentioned that you're you're married yes can you tell us a little bit about how that happened because i know that's something that's very anxiety provoking for a lot of people with autism like romantic relationships so i actually it's it's kind of silly i kind of fell into my lap so to speak um i i didn't really have any relationship experience until i was 22 when i was 22 i um i i this this sounds really bad uh i basically found a situation where i could rely on my looks to be able to bypass romantic or the the kind of romantic interactions to lose my virginity um so i had to go through this this kind of like cold calculation to be able to find myself in a position to be able to to go through that because i wanted to to solve that problem i'm sorry i'm looking at chat yes you can't look at chad from sorry everyone wants to know how you did it i want to know but you can't look at chat you're on a roll when you're socially awkward and you're not even if you're not neurotypical imagine all the neurotypical people with social anxiety who think that they're in cells and aren't even on the spectrum and here you have the answer for them and you get distracted by chat just let's put it on the adhd part as well um but yeah it is um so that that whole situation i i basically it kind of allowed me to i don't know i've admit my way through it so like like relationships are really like fine tasks where you need like you know like you need to be able to like be able to move everything just right for it to go through and i specifically reference oven mitt because that's what it feels like interacting with social circumstances it's this very um texturous fine-tuned interaction and we have oven mitts so it feels really hard to to be able to piece through that and it it worked i like looking back on it i feel bad because it definitely feels like a situation where i may have manipulated someone um into a romantic relationship in order to um meet that right it's it's not a it's not a nice thing at least i don't consider it a nice thing um but it allowed me to kind of get past that that big fear when you're a virgin which is what happens when you do get to that point right it completely changed the kind of dialogue and interaction for me uh can you help me understand i i i i find myself being curious about you know what yeah i just have so many questions like can you just share more about that i'm serious because i like i i think you know doing something because you want to get laid like i can sort of understand where you're coming from there but i think just as equally as important is like illustrating or helping people understand what felt unethical about for you about that what felt manipulative for you how you came to that realization i feel like there's actually a lot of all the memes and stuff aside i think there's there's a lot of important wisdom here so mainly what made it feel manipulative is for the individual like i i didn't really care specifically about them that it was kind of a means to an end i mean they they were obviously interested and wanted to engage in everything so it was mutual but for me my understanding of sexual interaction has always been based around things like love right that that very romantic nature so utilizing it to not utilizing love but utilizing sex to kind of understand was ethically problematic to me i think um interesting because you know to play devil's advocate for a second i mean you were the one who was there so i but i'm sort of you know my understanding of of sex and love is that the two don't necessarily have to go hand in hand and that especially if you're a 22 year old you know like a little bit of figuring it out as long as and it sounds like the other person was like interested in consenting and all you know that's that's the really important stuff to me but you know i i i want to say that like i don't want to discourage people from figuring it out because at 22 you're not going to know exactly what the relationship is between sex and love right right you're just not and and so i i'm not hearing anything so far that seems kind of unethical to me except maybe some expectations that you had but or that you you maybe were not that much like potentially romantically into this person but um i i feel like i utilized them not for sex but for what sex meant which is why i think this became a little bit more unethical to me oh no it's one of those things where when you're 22 um it makes sense but like looking back on it i i basically treated it kind of like a science experiment rather than like the the kind of like sexual experience right it was about seeing what it was about getting through that and kind of removing it as a factor rather than um rather than just trying to get laid interesting okay and how did you meet your you said that your current relationship sort of fell into your lap so i i met um i met my wife through a friend that i was able to make thanks to you know sitting in bars constantly watching language uh turns out they were like a big metal head so we we oh god it was amazing like finally this was one of those scripts where i didn't have to change the conversation every four minutes we would talk about metal for like hours and hours and hours like uh we love metal um but eventually he told me about this this girl that he had met she was getting her bachelor's in neuroscience i wanted to get my bachelor's in neuroscience and so we we um we started talking on facebook all that she was currently seeing someone else and you know as we talked more and more i um i i basically just laid out my feelings for her and talked like you know about how like i i cared for her and all that um and things just ended up working out she ended up breaking up with the the other guy who happened to be super abusive um we we shared our first kiss august 11th um and it is i don't know like i think because i spent so much time analyzing every single situation having to be super aware of where i was cognitively where i was emotionally actually ended up preparing me for that relationship so when we ended up in this i was very quick to i was very quick to be like hey this is problematic or hey this is bothering me or hey i don't like this and we would actually talk about things before they became a problem um i i definitely do see like a lot of my experiences as an autistic having been beneficial even unknowingly because of how much i had to rely on observing literally every single detail yeah it sounds like you know i'm i'm purposely avoiding chat because i can only imagine you know all the messages about your autism and chadness rolled into one but i i think it's great because i think it sort of illustrates something really really important which is that um what i'm really hearing from you is that you took a lot of risks right so i i'm not when you sort of confessed your feelings for her had y'all met in person um we we had men in person um we had met a couple of times uh and this is still when i was trying to figure out how relationships worked so you know like the whole you know oh you should you should ignore women that makes them want you like like all those kind of like really kind of crappy information that's out there for when you're young in trying to somehow cipher wisdom from all of that in in some form to interact in relationship and so what do you think is useful to make a relationship so it sounds like y'all are married now yes um i i honestly i got lucky i'm gonna be real honest i like i don't know how it happened it's it's like it's like doing that jump in a video game you do it once and you have no idea how you did it and you can never do it again that that is literally like it's just everything lined up i i don't know um but what i will say as far as it lasting we've been married for over we've been together eight years we've been married six um communication is so incredibly important is if the other if the other person doesn't know where you're at they can't work with you and she didn't know i was autistic when um we we got married and all that we didn't find out until years later and there were points where you know it looked like we might get divorced but having a conversation around there and understanding like yeah this is this sucks this is problematic we weren't quite expecting this but um we got through it because we we talked we understand she knows how much i love her how much i care about her um i i do what i can to try and help out even though i struggle in so many other ways like being being married to someone who isn't able to to bring in like full-time work or isn't able to bring in lots of money is difficult but um communication really helps yeah i'm glad you said that because i think that's what i'm hearing is different um so i i think that you know sometimes people feel like they don't they can't bring value to a relationship and i know you say frankly it was luck or so therefore it was rng and i certainly feel the same way about my relationship in terms of getting really really lucky but i do think that you know there are a lot of really interesting things kind of objectively des about your relationship and how it evolved and i think there are a lot of lessons to take away for people so here's what i'm hearing you you know this is this is what your character sheet shows right so you were born with the autism trait which is like comes with like charisma penalties and and things like that like it's hard for you to socially interact with people it can be really challenging and let me know if this sounds offensive at some point okay um and then also that like some of your disability prevents you from doing things like working full-time and things like that and so on paper you know i think a lot of people will look at that and will say like if if people are in your shoes like i could only imagine being you know a 24 year old person with autism who's unable to hold a full-time job and to think to myself that i'm not worthy of having a relationship i can't ever be in a relationship and yet what i'm hearing from you is that ultimately like you can actually have a very successful relationship and that as important and as it's hard right so there's some amount of shame and expectation and societal stuff and whatnot but at the end of the day that like communicating with your partner and like letting people know where you're at letting people like owning up to what your shortcomings are and trying to support them the best that you can that like you can talk about things and like let people know where you're at and and i think another thing that you're not really mentioning i'd imagine you're very good at listening and also like you know what people sometimes what the the trickiest thing that i see in terms of like marriage counseling i don't do a whole lot of it is that a lot of people make sacrifices and then feel resentful and then their partner says i never asked you to make that sacrifice right so like i'll make a big sacrifice and then i'll feel owed because i made this big sacrifice and then the person on the other side of the table is like i never asked that of you and then we get into this really tricky impasse because you know one partner feels really owed because they've given something up and then on the other side the other partner was like i didn't buy that thing so i don't owe you anything you know i never asked for that sacrifice and so what i'm kind of hearing from you i'm reading between the lines here is that i think you guys probably did a really good job it's not about making the sacrifice or not making the sacrifice or being able to be full-time employed or having autism or not having autism it's about ultimately being on the same page about where you guys are whether it's in a good place or a bad place and i'm hearing you say that you know you all have talked about divorce which sounds like very understandable because it sounds like there are a lot of challenges that you all face in your relationship just like any other relationship and that you guys have an additional layer of challenge because on some level you know there are a lot of things that society expects from you that you may not be able to do and let me know if this feels mean at some point i'm not really i think it's it actually is like a shining example of how so many of what we assume about a successful relationship i don't think is actually what makes a successful relationship it's not having a particular career it's not it's like really about being on the same page and it doesn't it sort of doesn't matter like i mean it matters but to me the most crucial thing i've seen you know two neurotypical people who have successful careers and are very charismatic who have gotten divorced and i think the problem is like they're not on the same page and i've seen a lot of people who feel hopeless because of certain disadvantages they have that they're unable to find love or sex but what i'm really hearing from you is that like you know that it's possible to have both of those things as long as you really focus on self-awareness attending to another person's needs being somewhat transparent about what your needs are these are the kinds of things that i i'm really hearing have led to your success what do you think uh absolutely i i think spending so much time observing studying being aware of recognizing i i think all these things have played an important and critical role in my own success with relationships um i mean it's it's like any subject the more you study it the better you get at it you might not um like like i i didn't i didn't just i wasn't suddenly born with my understanding of neuroscience i had to study it i had to go through i had to take classes and then you know i was able to actually start to understand it and so for a lot of normal individuals out there they might have all this understanding already kind of pre-built in whereas for for myself i had to study it and study and study and i think it paid off yeah well said yes um so i had a couple of other like so i i really appreciate everything you've shared with us i'd love to hear a little bit about aba activism what's going on with with autism if you want to talk about that um you know i think there are a couple of other things that you mentioned which i think are like really really important for people to hear like this concept of love being withheld based on your behaviors is there a particular direction you want to take things yes um so i'm like this is this is a really important conversation for the autistic community since aba is is generally considered abuse by our community um and on the idea of like the old school aba being a way of withholding love withholding attention with holding certain characteristics and why i compared earlier like giving myself aba um for for those asking by what aba is it's it's basically um put the simplest way not to to downgrade what it is or to downgrade ourselves it's it's pavlovian right whereas like you give a reward or you give a negative response to elicit a specific response a specific behavior and in the instance where i was talking earlier about with my uncle is my uncle would do an action um i respond negatively to the um clinking noise of a ball right my response would be okay i'm not going to react to that because i don't want that added that added pain because they'll keep clanking the ball in a nearest response to this annoyance so that is a negative reinforcement that tells me not to elicit that behavior this is similar to what we've seen in a lot of aba it's changed since then i've been told um but there's still a lot of problems especially like positive reinforcement can still be problematic if you're getting a behavior to respond that causes harm for example i once had a meltdown not one that resulted in me hitting myself but i threw my phone and ended up running into a wall because a professor touched the lip of my cam so i had a can um and their their hand touched the the part where you drink from which caused me to become everywhere very overwhelmed it's something that's very stressful and and painful for me but aba would see this behavior as problematic and would expose me to it constantly until i didn't respond in a negative way so what what what's what is the problem you see with that um uh it elicits pain as a way of um no longer performing that behavior rather than acknowledging the the needs of the individual and what is going on i you know ask the person to move the can versus moving the can yourself it it puts the burden on the autistic to suffer rather than creating a situation where no one is suffering that's a good point i'm not sure if people were um yeah so so that that's a good point so can i share like a similar experience that i've had sort of as a treatment professional go ahead so i was working with uh a young guy with misophonia so misophonia is a neurological disorder where like something is messed up where so normally when we hear a sound like you know sound hits our eardrum and then that you know the sound travels via a neuron to our auditory cortex then travels to our auditory association cortex so like i'm able to hear sounds but if i use words for example your brain does not interpret words as sounds it interprets words as words so that comes from your auditory association cortex so something is i we don't know exactly what happens in misophonia but there are some sounds that elicit like pain like so instead of you know like this hearing a particular sound is like the experience of like rubbing you know like this person described it to me as like rubbing like an open wound with sandpaper and so like literally sounds will hurt them and so the interesting thing this is unfortunately this person is is older now and so like back in the day they went to go see a neurologist who would essentially do exposure therapy and was like focused on like making this person more resilient and they're like you know much like exposure therapy like what we're gonna do is expose you to the sound until your neurons acclimatize to it and so what this person sort of discovered is that like they didn't ever acclimatize to it because it's sort of like you know it doesn't matter how many times you get kicked in the nuts like it's gonna hurt every time there's no like acclimatizing to getting kicked in the nuts and so the bizarre thing that the reason they wound up in my office is they were so traumatized by the treatment that they sort of developed ptsd and a personality disorder as a result like chronic ptsd so to see ptsd personality disorder it sort of completely changed the way that they like interacted with like so like they started to think of like doctors and parents like it was really confusing because they understood oh this doctor is trying to help me and like my parents are trying to help me but like they're hurting me a ton and they won't stop and they won't stop ever and they they tell me that every time i get hurt that like i need to be stronger and it completely reshaped the way that they looked at their like important relationships caused a ton of problems and i think the re the way we were able to make progress is through recognizing that you know early on when you were like six years old these people who were supposed to protect you actually would like take you once a week and rub sandpaper over your open wounds and what do you think that does to a child when it happens like clockwork once a week for an hour for a decade and and it's really kind of terrifying that like a lot of times i think unfortunately as treatment professionals there's a lot of iatrogenic which means like you know treatment-induced injury um and it's really sad but just uh you know i get what you're saying i i didn't i didn't realize this about aba though so it's good to know yes there there's been talks about changes i um recently read an article that came out in 2021 um and from there like the argument that aba has changed it's still argued as unethical because the practitioners are are working outside of their scope as well i.e that they're not experts on autism in that to treat a neurological disorder from a psychological perspective is also troublesome because it's it's not it can't be solely confined by behavior so it's kind of outside of the scope of the individual to not have experience with autism um like like to actually be like an expert on nazism so they can't even notice like if the autistic individual is in pain right because we we don't display our our pain we don't display our trauma in the same way that neurotypical individuals will so it's very problematic to say that well they're not they're not being hurt it's like anyone can say that it's like well they're not being hurt it it doesn't mean that you can't all right just because you can't see it doesn't mean it's not there yeah i mean don't get me started there because it's it's like such an uphill battle to try to explain to people who think that they're experts that they're not experts like the one lesson that i've come away with uh desk like just personally as a clinician is that i can have all the training in the world but every person i meet is an individual and when i run into trouble is when i start when i start thinking about myself as an expert and when someone comes to me and says you don't know what you're talking about like i've learned how to listen to what they're saying no matter where i trained no matter how much experience i have because this is the bizarre thing about medicine is like you know we we use like these protocols and paradigms but like literally every human being is unique and so i don't know is a system of medicine why we don't sort of like acknowledge or factor that into our day-to-day operations but i think it's really hard to explain to people who believe themselves to be experts that you know you may not know as much as you think there's a lot of like professional hubris certainly within medicine i think we see it a lot in in especially unfortunately in mental health because you'll have a lot of people who are you know i i think i i have a bias here so you know i have to kind of share that but it's my belief that a lot of our mental health is actually physical in nature um there's a lot of evidence of this nowadays but if you look at like for example you mentioned the fight or flight response right that's a physiologic response and so i i don't know how much therapy is gonna help i i mean i think therapy can help a lot with that kind of stuff but i think that therapists if they ignore the physiologic component of your your autistic meltdown they're gonna be doing you a disservice the challenge is that most therapists are not trained in physiology um right and and we see this a lot too in terms of of physical medicine as well where medical doctors who are not trained in psychology will like ignore the symptoms of their patients because they think that they're psychological so like everyone's guilty of it you have medical doctors that are ignoring the psychological component and you have psychologists who are ignoring the physical component um and and i think that unfortunately like the problem is like the person who gets screwed is the patient um which is sad and and i i've just seen a lot of professional hubris like and i don't think it helps people like i don't think it does right by our patients so i don't know what i'm trying to say there but no i i i completely understand what you're what you're getting across it definitely is a problematic situation it there was something i actually i wanted to say on that too that was really really important oh no damn it this is this is the problem with the adhd brain as well we have that thought but we didn't write it down so it's just it's gone well next time just interrupt i know you've trained see i've been taught not to interrupt that i know it's the problem so i know you've trained yourself not to but like i think next time interrupt you know i guess um let me try to run through the sequence so we were talking a little bit about and see if we can catch it again even if it slipped away so uh you had talked a little bit about how aba is still unethical i shared the story about misophonia how a lot of times treatment can actually be like iatrogenically injuring that we're trying to help people and we actually end up hurting them instead um and then i talked i ranted a little bit about professional hubris and a big problem that i see in sort of mental health treatment which is that uh you know meant yeah there you go autonomy autonomy it's the idea that those with mental health issues don't have it and so that these experts feel like they have a power of authority over the individual because they they're not as seen as having autonomy it's one of the big issues that we face as autistics is that we're emphasized things like the the puzzle piece puzzle piece and how all these little different components it gives people the idea that we can be spoken over because we're not capable of speaking for ourselves i think it's only approximately 30 percent of autistics have an intellectual disability so there's still a large portion of the autistic community that is capable i mean are not even those with intellectual disabilities they can still speak from themselves they might just need more help to be able to do so but that 30 is what's seen rather than the entire autistic community and it's it's sadly not just us as i was mentioning it's the entire mental health as well where you lose that autonomy as soon as you're seen as having a disability a good example is individuals in wheelchairs people will go around and push them in the wheelchair if they're in the way they'll invade their their space above their head like it that that kind of individual control is gone i've never heard of the face i mean i think it makes a lot of sense but i've never heard the phrase invade the space above your head their head i never think about like when i think about my personal space i mean i you know i haven't sat in a wheelchair but i'm just appreciating for a moment that generally speaking when i think about invasions of my personal space i think about them in like horizontal directions i don't really think about in a vertical direction i i i don't mean i mean i'm laughing just because i don't know what else to do right now but i it's bizarre like i i can't imagine what it's like to you know have to worry about that space and i feel lucky to not have to worry about that space but it's it's it's crazy um yeah i'm with you in terms of autonomy though and i think this is the the other tricky thing yeah so that's why i was kind of curious about you know this term disabled because i see this a lot too and i think sometimes yeah it's tough because i think we're quick to take away other people's autonomy um i see this a lot too where a lot of times we like i see this with with our community actually and like when they talk to their parents so we work on this a lot where people will say you don't understand right so like the parents will say to the kid like you don't understand like i wish like let me explain it to you and it's like no like i'm allowed to understand and disagree it's not that i don't understand like you're you're kind of assuming that i'm ignorant whereas i just disagree i'm allowed to have an opinion that is different from yours and that doesn't make it objectively wrong it's not a deficiency in my understanding i see this a lot also in gender dynamics um in terms of like sometimes you know people will like especially towards women and within our community um you know people will be like oh because you are a woman therefore your opinion is worth less than someone else's like you need to understand or actually i don't even know that it's even that conscious but like i i see this a lot where where disagreements are viewed as like a lack of understanding anytime there's kind of like this power dynamic whether it's parents and kids or men and women or whatever have you had personal experiences where you felt like you've been kind of shouted down or ignored because of your disability i want to say yes but i'm not able to pull anything right out of the top of my head totally fine man okay um i know i've had to argue a lot with like psychiatrists and everything as well just in general um things like medication it's one of the reasons why i pursued pharmaceutical sciences and stuff because i wanted to have a bit more control over my own medication since like when it comes to like the pharmaceutical side it's very it's not patient tailored because we're not going into like genetics etc etc so finding those right mediums were very difficult and so i wanted to have some sort of authority in that conversation to be able to better treat myself versus where it's just no i'm i know better yeah that really pisses me off like i i think that i i recently had a conversation with a patient of mine where you know it was a tough it was a tough sort of impasse um because i was sort of recommending a particular medication that they didn't like and then ultimately like you know at some point in the conversation i was like i'm not the one it's easy for me to make this recommendation because i'm not the one who has to put that pill into my body on a daily basis you know and i think that's very easy to forget like we sort of think about um you know what's like evidence-based and scientific but like as is pharmacologic prescribers like we're not the one who has to you know i have this book right and the book has a list of side effects and i'm like it can cause dry mouth it can cause weight gain it can cause erectile dysfunction but like i'm not the one who has to live with it right it's the patient who has to live with it and that's what makes it really really challenging i think oftentimes as prescribers like it's one of the things that i try really hard to remember it's something that i don't think we emphasize enough but i don't think that you should need to get formal training to be informed about medications i think actually that's your right as a patient and it's the responsibility of your doctors to equip you with the information to make an informed choice as opposed to overrule what you want to based on their authority like do they know about it more than you do absolutely but it's their job informed consent is like not about the consent it's about the informed absolutely um i i do actually have an example as well i went to uh my friend's wedding and i had gotten lost um i was in the actual wedding venue but i guess i wasn't supposed to be there yet and i i told like this person came through and said like hey you're not supposed to be here like he was like getting really aggressive with me and so you know i i went in and opened up immediately hey i'm autistic i'm confused i don't know where i'm supposed to be and his response immediately was to see me as a child he directly put his hands on me it was like they're there bud like literally all of my autonomy in that instance was ripped from me rather than being like hey i might have some trouble interacting this conversation i just need a little bit help like it was completely ripped from me and just like like my personal space was invaded my intellectual capability was invalidated it sucked like like i i don't want to call it dramatic but at the same time it it felt disgraceful you're good with words yes i i paid a lot i had to pay a lot of attention to words growing up um like there was times where like i i think i spent days studying to understand metaphor similes stuff like that just because i wanted to have greater communication capability yeah i think you do a very good job i think you're you know we talk about alexa thymia sometimes on stream i'd be really curious about how you learned how to put words to what you feel because i even saw like the gears turning in your mind there where you were like recalling the experience and trying to figure out what is the right word to describe how i felt um and and it was yeah you're good with words man it's cool it's it's it it's it's a pleasure to hear you talk about stuff because i think i'm happy to hear that yeah you you're like you're skilled with your words like in terms of the way that you paint and you can paint a very clear picture because your words are quite precise um do you want to talk about color on the spec color i'm sorry did you ever respond i mean i didn't mean to shift gears on either but so color the spectrum is event that is happening april 30th that is really problematic for the those of us on the autistic spectrum um it's done by mock robber and i'm sure it's it's done with good intention uh some of the language used one of the like problematic things are things like my son will never be able to become an astronaut where there's a lot of this like a lot of autistics and a lot of parents are hit with this immediately as soon as their child's diagnosed with autism your son will never be able to do this your your daughter will never be able to become this right there's a lot of um a lot of i can't think of the word there's a lot of qualifiers placed on what a person can and can't be as soon as they have a disability and i this language is really harmful to the autistic community um we were kind of as mentioned emphatized where we're seen as children a lot of everything going on is from the perspective of parent to child rather than adult to adult or adult to child right i think that the an adult to a child that communication is different than a parent to a child um and next for autism is the charity that's being supported up until recently they wanted to cure and prevent autism which many of us in the autistic community feel is very um they they use eugenics um i i think that's a very very powerful term um i i see it as saying you don't want me to exist that autistics shouldn't exist because we're seen as problematic um of course next raw autism came out with a whole thing like oh we never said that this is this is just gross misinformation and then they silently remove their their mission statement that actually include cure autism etc and just didn't talk about it so they they basically gaslit the entire autistic community and just like oh don't listen to them and sorry go ahead can can i can i play devil's advocate for a second because now actually i'm a little bit confused devil's advocate means i'm supporting a point but it's really i'm confused so when i as a medical professional when i think about a disability i do certainly have a bias like for example when someone you know loses a let or i i maybe that has to do with losing um i tend to think about restoration of function is an important part of my profession and so when i think about someone with like a physical disability like if someone had lost a hand like i would think that it is a good move to for that person to no longer be disabled um when i think about you know like i'll write letters for like medical disabilities for people with depression i certainly i mean i personally like have a goal as a treatment provider to get that person to no longer be disabled so now i'm a little bit confused about um and apologies if i'm you know coming across as like not understanding because i i'm really confused now because when i when when you use the word disability i think about something as i that word triggers in me the idea that something neat could or eventually should be fixed what do you think about that i acknowledge that my the it is a disability it does limit what i can do what i can accomplish but i think it's a disservice to also what it allows for us to do and for what it allows for us to accomplish right it's important to acknowledge is autism a disability because it's a disability or is it a disability because of society and understanding how our ability to function in society makes it a disability that's right there's there's a lot of that argument where it might not be something that needs to be cured or prevented because rather it should be about meeting us and understanding what we are or what we're dealing with rather than be like you don't fit let's fix you because that that yeah that's super problematic very well said so i'm i'm gonna kind of just riff off that for a second and talk about adhd so a lot of times when i work with people with adhd also as a clinician i try really really hard to not take the kid and make him successful don't default to making him successful at sitting in a classroom for eight hours a day so so my treatment if you can call it that for adhd is to try to structure an environment where there are vata mines so they have a mind that's far more dynamic can handle a lot more varied stimuli and is not really suited to like staring at a book for four hours a day so what i actually try to do with my patients with adhd is not to turn them into people who can read books but to help them structure an environment because i think that adhd is actually like more of a natural i mean there's definitely a clinical illness in there but i think there are too many people who get diagnosed with adhd because their minds are not suited for a particular environment like school so there's a really interesting bit of research that shows that as the student-to-teacher ratio gets worse more kids get diagnosed with adhd so if you have one teacher in 10 students very few diagnoses of adhd if you have one teacher and 50 students like half the class is going to get diagnosed with adhd so i can totally get behind that did you want to say actually i actually wish i had that kind of treatment growing up i for me the only place i can actually study is in a classroom now so i need like this this very specific environment anywhere else i can't study yeah it sucks yeah i think it's it's also an interesting philosophical question about you know how much do we change who we are versus how much do we adapt or shape our environment to accommodate us i'm curious and let me know if this question rubs you the wrong way if i could give you a pill and and that would quote unquote cure your autism would you take it it's one of those hard things right it's like it can't i can't quantify what part of me is autistic right that that's one of the big things in like why we we tend to prefer autistic individual versus individual with autism is because we can't really separate that we can't be like oh that's that's my autism part okay bye i don't like you it it's it's so much of who i am and so to secure my autism would mean eliminating who i am and so like i i i couldn't like ethically not just like not just because of like the other reason so even ethically i would be deleting a part of myself interesting so uh can i disagree with you a little bit yeah sure you're more than welcome to disagree all right so all respect but so this is where like i tend to be in the minority and i realize what i'm about to say like may offend like millions of people but you know it's weird uh yes like because it's hard because what are you right like i can understand exactly where you're coming from but the more i've meditated so a lot of what i'm saying comes from my experiences in meditation where i've come to realize that core parts of my identity is not truly who i am so i i would potentially for example identify as a doctor and i clearly do and there's a part of me that feels like if you took my medical license away i would not be me but oddly enough the more i've meditated the more i've come to realize that even being a doctor is a false part of who i am that the truest part of who i am is somewhat transcendent and cannot be reduced to a particular quality i know it sounds weird but like like i i don't think of myself so it's it's kind of bizarre so i work with a fair number of people who are transgender too and and you know my approach to them is i can't tell if this is like really really offensive or really really accepting but that their basic humanity is like makes the core of who they are and that that transcendent humanity is far more important than what their [Music] gender is and some people get really offended by this and we have that conversation and other people really appreciate it i'm not sure what's right or wrong it's just been my experience in terms of discovering who i am because there's a part yeah sorry i don't think i follow doesn't that fit my statement because you said that it may sorry yeah so so that that's what's also kind of confusing i think it's a different way of looking at identity but like i there's a part of me that says that we could change a lot of things about you and you would still be you but what i'm hearing you say is that you consider your identity to be entangled with autism and so removing the autism is removing a piece of you right like philosophically and somewhat neuron scientifically speaking like our our consciousness is our brain right we could argue that the structure of our brain plays a large role in our consciousness with autism being a neurological disorder the way that my brain is shaped is shaped so by my autism so to change that neurological component would be to change myself yeah so then my next question is is changing yourself a bad thing there is a difference between changing yourself and neuroplasticity and choosing key components of your identity um and in that i i can't think of a good example right now there there's superficial change that we all have that to some degree i think can be critical um but at the the identity of it all it's the same i think maybe this is a good example of phineas phineas gage uh for those who don't know phineas gage had a rod he was a railway railroad worker he had a rod go through his um his job basically i can't think of the specific um and went through the frontal cortex which caused his entire behavior to change um so he started gambling he went from like this religious devout person to a gambling alcoholic very aggressive very um just very horrible person so to speak by comparison not saying that that is horrible but um was he still phineas gage right and like that that's the whole theory of like mind and what is and isn't i don't think i'm equipped to really have that that conversation but to my understanding is that i cease to exist when that changes yeah so this is where things get a little bit tricky because i i you know it's it's interesting um yes because i i get exactly where you're coming from and i think autonomy is ultimately like what is most important so i think you get to decide whether you like who you are and whether you want to change i do think it's arrogant for an organization or for someone else like including myself as a you know potential treatment provider for me to decide what is right for my autistic patients like i don't get to make that decision you get to make that decision and and so i can get i can totally support you 100 in terms of you know you saying that autism has shaped the person that i am and i would it's i didn't hear you say yes or no if i offered you the pill no no okay so i think that's totally fine i think that's that's ultimately i think autonomy is tends to be the the ethical principle that is a treatment provider like i try to value above everything else um at the same time i also find that i'm in the profession of trying to make people change that a lot of times people will come to me because there is a part of what they view as their core identity which they do not like in which they want to change and i think that's totally fine too i know personally that um a lot of my journey has been struggling to get away from my identity and discover who i truly am because i think a lot of our identity is like crafted and given to us right like you're right like the identity that society gives you when you when you're at that wedding and you say to this person that i have autism and i'm confused i'm not sure where i'm supposed to be the way that the world treats you the way that the identity that like the world kind of hands you is one that i think sometimes we have to actually try really hard to get away from because i think we also internalize some of that so it's not just uh you can arguably say yeah society's like society's wrong but i think what we do is we internalize these things right when we think about shame and stuff like that we start to believe that we are you know when it comes to the chads and the what chads and the betas is it chad and beta is that the what's the opposition anyway i i don't know so it's tricky but i'm i'm i'm really happy that you you answer the question i i feel like i learned a lot and i i think you've really helped me understand you said not people without because that's interesting because i've been told the opposite that it's more offensive that you define a person by a particular diagnosis that's the thing right like like as i was mentioning since autism is a neurological disability we are as much autistic as we are a person we're an autistic person right our our identity can't be separated i can't just like okay i'm gonna go ahead and take my autistic self i'm gonna just leave it at home and i'm gonna be totally normal today i never can separate that so i was taught the opposite by a different group of people with a different diagnosis so and i'm not saying one is right or wrong but like just to share with you like another conversation i had i was talking with people with schizophrenia and in medicine we have some diseases that we define as the person so we'll say so and so is a schizophrenic right but there is no noun that involves cancer so cancer is an illness like you're not defined by your cancer like you get diagnosed with a cancer i have a cancer i'm not like a cancer rick and so people like when i was kind of like talking to people with schizophrenia what they were sort of saying to me is that they don't appreciate being defined by a particular illness or aspect of themselves and that they think that the person is more important with schizophrenia because there's still a person and the problem is that once you get labeled as a schizophrenic you become a schizophrenic you become a and i guess what they would say is you become an autistic in the eyes of others but that your humanness is more important than your autism but i understand both sides of the argument i don't know i i think when it comes to schizophrenic it has a lot to do with the stigma as we mentioned at the start of this the individual with borderline personality disorder these things have such negative connotations to them that you naturally don't want to be associated to that you want to be seen as a person because what society sees when they hear these words are untouchable someone that just to avoid um thankfully that hasn't happened with autism yet okay and so i think we have the ability to take that word and make it a positive rather than trying to distance ourselves from negative connotations um and so do you consider like if i were to so you refer to yourself as an autistic individual is that your preferred and and uh is the term uh is there a noun form of person with autism is it an autistic yes an autistic as an autistic okay um so so it the then the term autistic is not offensive to you no okay got it thanks for clarifying cool uh again i can only really speak for myself and other autistics that i've interacted with um obviously there's going to be people of a community that might feel otherwise i i think i saw a comment it's up to the individual and i think that's important as well to consider is that some individuals will prefer to be referred to as individuals with autism some will be referred to as autistic individual and i think both should be honored based on the the individual person yeah cool anything else that you want to tell us or explain to us about you know what's going on in the autistic community or anything that you want to raise awareness of um i'm currently doing a charity event for autistic self-advocacy network uh we've raised sixteen thousand eight hundred and forty dollars so far this month this is my third year uh running warriors for autism uh in world of warcraft i eventually would like to start my own charity focusing on helping autistic adults i want to focus on you know things like housing and employment and kind of like creating this this community that is self-sustaining but in the meantime one of the most important things is i think self-advocacy equipping autistics to be able to advocate for ourselves to illustrate what autism is so that the the broader population can understand who we are is incredibly important and it's one of the reasons why i've been really really proud to support asan for these past three years awesome can i ask one clarifying question sorry about the terminology yeah go ahead is the term autist hopefully that's not a bannable term but do you know but is that offensive or is that okay i'm not a big fan of autist uh i i don't know about others like i i can't speak on that one with any authority um but i know that autist has a bit more sling to it in that it has negative connotations kind of similar to um sperg a lot of people don't know that spur comes from asperger's and that a lot of the characteristics that use or are associated to sperg are the negative characteristics that you associate to autism okay thanks for clarifying yeah i i sort of am more familiar with that term in terms of like i do find it to be a little bit more derogatory and stigma inducing um i basically don't see it used outside of 4chan which i think by definition makes it a little bit less safer yeah exactly oh so but thanks for clarifying to us i appreciate that of course um any so sometimes i'll teach people how to meditate on stream is that interesting to you i actually used to meditate a lot when i was younger um i got harassed a lot for that like one time when i was in a after school care thing i would be meditating and not even joking one of the employees there uh took their drink and threw it in my face that's crazy man yeah um i wish i have so many stories like this childhood was rough but yeah um so meditating yes i haven't done in many many many years but um i used to quite regularly um okay so i i can teach you like a relatively introductory technique which we do frequently on stream um maybe we can all do it together but it's a good technique because it actually increases your sympathetic let me think about this so there's one that balances your sympathetic and parasympathetic nervous system and there's another one that um [Music] are you just suppressing yawn no okay i i just felt like i got a yawning signal from you but um i i just took a deep breath just like like getting prepared to meditate sorry i was like oh he's trying not to yawn to to to be polite and he's been programmed so oh no no oh my god i um i was taking physics a calculus based physics and it was lit at night and i totally forgot where i was and i just let out this big [Music] while the teacher was talking yeah um i have something to show you real quick uh so i can give you two options for a technique one is one that balances your sympathetic and parasympathetic nervous system and another one actually activates your parasympathetic nervous system more directly uh this is not what i was looking for but i think it's interesting um so there's some evidence that people with who are tests high on sociopathy don't actually um uh people who test high on on the sociopathy scale actually don't uh um they don't uh yawn the same way so like if contagious yawning is less common in people who are sociopaths so if you guys are for those of you on twitch chat who are yawning with us you are less likely to be a sociopath and for those of you who are not yawning you're more likely to be a sociopath um i this is not the paper i was looking for but i i grabbed it anyway just because i think it's interesting because this one talks about autism versus psychopathic traits i've never seen a paper that compares the two but i'll have to look at this i can send this to you if you want yeah i'd actually really like that yeah that was actually one of the hardest things i found about my master's program was reading papers oh god i hate paper so much i think that's the adhd part though annaletti i don't know her but okay interesting um so in terms of uh meditation you want you know we can do something that is um [Music] what you may call um we can do something that's parasympathetic and sympathetic or something that it really recruits the parasympathetic nervous system more directly uh let's try the parasympathetic more directly okay so i'm gonna teach you um a technique called bellows breath actually let me think about let's teach you something new um so i'm going to teach you um hold on yeah okay i'm gonna i'm gonna teach you a technique called bellows breath or no that's not the translation um i'm gonna teach you i forget what the sense with word is but i'm going to teach you yeah let's just call bella's breath it's technically not correct but so what i'm going to do is do a series of rapid forceful exhalations followed by a passive inhalation it's kind of hard to describe it you'll you'll understand i think hopefully when i show you so we're going to breathe very rapidly focusing on the exhalation and then what's going to happen is our co2 level is going to drop really low and so as our co2 as we become hypocarbic our respiratory drive is going to compensate by slowing down our breathing and so as we slow down our breathing it's gonna be like really really natural and then we'll sort of be in this like chill state afterward okay so what i'm gonna do i'll just demonstrate so we're gonna start with like i'll do nine breaths and i'm gonna blow out x forcefully through the nose nine times and um it sounds kind of weird but i'm not gonna focus on inhaling i'm just gonna try to push out air over and over and over again and then after nine breaths i'm gonna just be silent okay so ready hold on i need kleenex the snot came out okay here we go did you get that so nine forceful exhalations okay okay so i'm gonna try this let's i'm gonna watch you do it okay okay breathe out hard nine times and then just chill after okay good so second time around we're gonna do let's do 15 with our eyes closed okay so take it deep so close your eyes take a deep breath in and begin all right let's do 20 now how do you feel after the 15 breaths confused mostly okay so let's try 20. am i supposed to breathe in directly after the 15 or do i hold my breath there for a bit because i have your breath okay just do whatever feels natural because holding my breath is what felt natural because like i just didn't want to breathe yep yep that's the point so but don't try to hold your breath right so i i told you there's going to be a natural slowing of your respiratory rate because you're hypocarbic so your your your your mind will st like you'll feel like not breathing and then as you don't breathe it'll actually like recruit your vagal systems okay right so rapid breathing is associated with this sympathetic nervous system activity increased respiratory rate so what we're doing is recruiting naturally our vagal system okay okay so let's do 20 breaths ready take a deep breath in go so we're just gonna sit in this space for about 60 seconds this when you're ready go ahead and come on back how you feeling it feels very similar to like a hot shower or a hot tub or relaxing on the couch with a loved one interesting relaxing on the couch with a loved one meditation well yeah like like there's these times where like you just find a really good show it's not like super like exciting but you just feel so at peace with your your loved one that you just kind of like melt into the couch you don't really know how to so that's what we call parasympathetic activation right that's a beautiful way to describe it actually is like you know you're kind of recruiting your floatiness your chillingness and um you know i'd be a little bit careful desk like i'd experiment a little bit on your own um maybe if you have a clinician involved uh you know just touch base with them but my hope would be that if you're ramping up towards like an autistic meltdown you may be able to use this to recruit some of that floaty sensation you just got to be a little bit careful that that initial hyperventilation phase doesn't actually make things worse chances are i use this technique um for people with who have panic attacks and if they can do it kind of early enough they can sort of stave off the panic attack and a lot of times even in the middle of a panic attack it can be helpful and they always tell me when i when i do it with someone who's acutely in a panic attack like in the emergency room they say it doesn't help but then a week later they're like yeah that actually helped a lot i just didn't realize it at the time so i i didn't use this metaphor earlier but i think it's a good example to describe kind of the the difference between neurotypical response and autistic response it's like we have this this water balloon right and so the water balloon can hold so much water um and eventually if too much water gets in it it bursts right i feel like normal individuals have valves towards the bottom of it so it takes a lot of water and a lot of like miss mis fortunate circumstances for it to actually fill enough to burst um so eventually like as water comes in water goes out for those of us with autism or at least for myself specifically the way i would describe it is we have a much smaller balloon and the valves are at the very top so as it fills with water um it takes longer for water to come back out so it fills up at a much more rapid rate than the the water like going out um so we're more likely to hit that burst point before we realize that we're full so it's really hard and requires a lot of um cognition of like there's water in here i need to to start prepping and preparing myself before it even reaches those valves well said beautiful analogy dust so thanks a lot um for coming on you know we really appreciate you coming on sharing your perspectives about you know what it's like to kind of grow up with autism i think you did a really awesome job of um showcasing kind of what the experience is on the inside for someone with autism in terms of like you know not being able to really understand why things were hard for you which i think is a really really good example i hear that the most from people not with anxiety or depression but people with autism and adhd i don't understand why this is hard for me when it seems so easy for everyone else um yeah yeah sorry no go for it oh no no i was just going to agree with you yeah i think it's a beautiful way to describe you know because a lot of times people aren't going to know like like people who may wonder if they're autistic i think this is a really key takeaway for them is that if if things just seem really really hard for you and like they seem so much easier for other people there may be something going on like autism or adhd exactly so i think that's actually like a really beautiful way to put it so thanks very much for coming on um thank you for all the work that you do i think it's awesome that you're doing it and um yeah man thank you thank you so much for having me this has been really exciting and this i was so nervous about today i'm not gonna i was so nervous but this was actually really great i really hope that the my story and everything's helped connected with others and i mean one of my favorite things is people hearing this the story and realizing like hey maybe i'm autistic you know and they they start looking into it they start pursuing it and they might finally have answers to why life's been so hard and not only that but to have that connection and to finally feel that sense of belonging um yeah so thanks a lot man i'm struggling to not make an uh make a joke about how much of a chad you are like you guys can find des at twitch.tv slash des the autistic chad uh but it's desmophisto right yes that's methus though so check out des on on twitch and good luck man yes thank you thank you that's great okay who are we rating chat

Channel: HealthyGamerGG

Views: 77,754

Keywords: mental health, drk, dr kanojia, healthygamergg, healthy gamer gg, twitch, psychiatrist

Id: 5uMW21UfOSg

Length: 123min 47sec (7427 seconds)

Published: Tue Aug 03 2021