@@Haru-nee It is more like "normal people" (not best or even good, just the statistical majority), who also break the rules, see a exploitable weakness in others social skills, so, they project their own misbehavior onto others who lack defensive social skills, which functions as a deflection mechanism, so the rest of the herd doesn't notice how badly they behave. As generally, everyone already knows how badly "special/gifted" misbehaved, because again, either the special/gifted kids don't comprehend the practicality of survival mechanisms like; "caring about social customs that have no real meaning", Or, "don't be too honest" (overshare) because people will persecute you for your good intentions, just like scammers use personal data, Or the gifted/special, still hasn't built up the firewalls of "social defense". But the " normal person", has been lying, hiding, & manipulating while misbehaving for like ever, so most other "normals" , find it easier to side with a "fellow normal" (insert Steve bushemie meme). Or the other Normie's are also trying to scapegoat the gifted/special kid to again, blame for their own life's problems, or playing the bullying "game" for money, just like scammers.
My son is on the spectrum and he describes his experience in a social context like this: It's as if I'm forced to play a game with others but I'm the only one who doesn't know the rules, which also keep changing all the time.
Very true, and people won't tell you the rules (except for some precious few), because then you'd be unauthentic for trying to play by them to be accepted :/ When really you want to be as open and honest about your mind as possible. It would all be so much easier if everyone was honest with each other, even though I understand that rules and small talk is important to find out if someone is exhibiting red flags.. It would be nice if NTs could tell the difference, which I think they can once they know how autistic brains work.
I feel like a fairly normal person and that's what it feels like to me as well sometimes. How many times do people react badly to you or do random shit that had nothing to do with you. I think it's wrong to assume that there even is a "normal" way to interact. But I can see the struggle for sure. The way I see it now is that when something doesn't work out it's something with the other person. Because I'm usually friendly and approachable. Them ignoring me or being rude is a reflection of them. Of course if you don't understand context you will run into issues.. like following people at night.. or talking to them on the toilet. And even those can work depending on the situation and the confidence you portray.
@@hgzmatt right! I have the same thoughts. I'm neurotypical (or so I believe) and social interactions are tough. Every groups makes their own unwritten rules and it's hard to keep up becuase of expectations. Everyone expects others to know everything and when expectations are not met it becomes chaos. I've been there many times. I'm very serious so people often interpret my speech as harsh or coming from a mean place when I just don't like to over smile. (that's what people do here where I live). I guess we cn compare it to culture shock, for example Germany vs Japan vs the US vs Mexico. Very different unwritten rules for interactions
@@Kaybye555 Yes, exactly. I actually lived abroad and so I'm probably a product of both cultures which also makes me an alien in both. Eh I don't care, I'm better for it :P I've noticed myself being quite the chameleon.. depending on who I talk to.
I think there really needs to be more support for late diagnosed autistics. So many of us have gone through life thinking we're just innately broken and fucked up people. Society has just pounded into our heads that we're just bad at being people. When we finally get our diagnosis, many people think we're trying to use it as a crutch or like it's some sort of an excuse. There is no support for autistic adults, so it's no wonder many of us feel so lost.
This is one of the reasons I do so much work in advocacy and supporting ASAN. The support starts with us unfortunately. We have to build it for future generations.
@@desmephisto3121 yeah it's easy to get hung up on being 'missed' as a child, but the sorts of interventions and therapies you'd get if you were dx'd as a child aren't much better than the ones available for adults. we just don't understand autism anywhere near as well we do depression, bipolar, epilepsy, and other neuro/psych disorders that have been widely recognized by the medical profession for generations.
@@desmephisto3121 Gotta say man, as someone who's currently 29 and 99.9% positive I'm autistic but undiagnosed, I really enjoyed this talk. I was diagnosed as ADHD at 23, but was also tested for it in 3rd grade, except the people who did the test initially said I wasn't (looking back, the psychologist who eventually diagnosed me said that they must have been unqualified and that he would've diagnosed me on the spot with the same test results from 3rd grade). I related so much to what you said about putting yourself through your own version of ABA. Also experienced the same burnout after college, which lead to a depression diagnosis, followed by anxiety and then eventually ADHD. I knew a lot of autistic kids growing up who needed more support and had less of an ability to mask as I did, and seeing how they acted and were then subsequently treated, I altered my own behavior to avoid detection and avoid their fate. I owe a lot to them looking back. I also learned to parrot even subtle social cues like facial expressions, micro-expressions, body language, looks, nods, handshakes, etc, and learned when and where they were appropriate to use. Even if I still wasn't always completely sure what they meant, I learned when people would use them and how others would respond. I'm still figuring out where the mask ends and the real face underneath begins. It's been so long that they're somewhat fused. I pass for neurotypical very easily in most situations, more so than many autistic people who I've heard claim the same thing. I'm a good actor, essentially, but I've been "acting" so long that much of the act IS me. Best I can do is shed behaviors and thinking that no longer helps me or feels like a genuine expression of myself and let the thoughts, feelings, and behaviors I've been suppressing emerge. I've always loved hanging out with people on the spectrum, even when I was a lot younger, as I just felt a lot freer around them and admired how genuine and in the moment they could be. I could relax more and get excited more around them. Go figure that a lot of my friends ended up being ADHD or on the spectrum whether either of us knew it at the time or not. Great discussion. Very relatable.
Having been diagnosed at age 32 (35 now), and even only being 15 minutes into this, it's safe to assume this is going to help a lot of late/undiagnosed folk. My relation to being diagnosed: If life is building a birdhouse, then the autistic is given the same instructions as everyone else, but is given different supplies. Getting a diagnosis isn't being given a new set of instructions, simply an understanding that your supplies are your's to build whatever birdhouse you want.
Lol this is a terrible analogy, most of us have no supplies to build anything with, especially if late diagnosed (after all the abuse we receive from our parents for being different) and the "instructions" are in a foreign language
This guy is a sage. The way he thinks is fascinating; every thought he expresses is so cohesive and every word he says finds its way perfectly to the next. Overall seems like a really chill dude
It's so fascinating listen to two master communicators talking together. Des is so insightful, articulate and sweet. His wife is super lucky to have him!
Great conversation! Around 1:35:50, I think Dr. K and Des are using the word "identity" differently. Dr. K says "What I'm hearing you say is that you consider your identity to be entangled with autism, so removing the autism is removing a piece of you." Here, Dr. K is referring to "identity" in the way that he talks about his own identity as a doctor. (To paraphrase, Dr. K says "There's a part of me that feels like if you took my medical license away, I would not be me. But the truest part of who I am is somewhat transcendent and cannot be reduced to a particular quality.") It seems to me that Des interprets the word "identity" as "self" (not concept of self). I don't think Des ever co-signs Dr. K's definition of identity in this conversation. To paraphrase, Des says "the way that my brain is shaped is shaped so by my autism, so to change it would be to change myself." He doesn't mean that changing his autism would change his concept of self (identity). He means that having [a type of brain wiring that we happen to call] autism is inextricably entangled with who he IS -- his "self" in the transcendent way. This feels different than Dr. K's example of having a medical license or being a doctor. Those are overlays to his transcendent self. Des is unable to go through Dr. K's hypothetical thought experiment, because Des can't reduce himself to a particular quality, including what Dr. K considers the "quality" of autism. I'm autistic as well, and I can't imagine taking a pill to cure the autistic parts of me. Don't get me wrong, I'm often VERY frustrated with the experience of being an autistic person in this world, but I can also experience pleasure (and, sure, utilitarian value) from the same traits/pathways that cause me pain. For example, I'm very sensitive and particular with sound, which causes some pain, makes it difficult to partake in certain activities, AND also makes me perceive musical details in a way that instantly sparks connections to seemingly unrelated things and fast-track revelations in other areas of life. It's a process and a spidey-sense that I can't explain to other people, but I've never had to work for it or consciously level up to it; it's just how my brain is wired, and I can't conceive of what it's like to not hear music this way. When my sound sensitivity causes me to melt down at a restaurant or abruptly leave class in a state of panic, it's easy to say that "my autism is getting in the way." But when I compose an intricate piece of music, add interesting violin textures to a recording project, or produce an award-winning radio segment about the genius of Disneyland sound design, is not my autism part of that too? Something I've noticed from well-meaning neurotypical people is that they often dance around my being autistic. (If the word "autistic" carries too much identity charge for anyone reading this, let's just replace it with "sensitive"). When my "sensitivity" plays out in a way that embarrasses, disappoints, or inconveniences other people, it's often reduced to a negative or pathetic/pitiful character quality. But when the same "sensitivity" allows me to do something that people perceive as badass or successful, they treat it like it comes from a different place, as if it's not a different side of the same coin.
I think you're completely right on this and I had the same thought regarding the "autism" identity conversation (and comparing it with being a doctor, which really, is not comparable at all imo. One is something you -do- and one is something you -are-).
I think how disabled people tend to think of themselves is inherently incompatible with Dr. Ks philosophy. when you face a lot of societal rejection and infantalization it's hard to separate yourself from your physical existence. Even if your physical situation is causing you a lot of pain it is still the lens you're viewing the world through. If I took the magical pill I feel I'd be effectively killing myself because the change would be too radical for me to even recognize myself. That new person could go on to live a better life but it wouldn't be me. Disabled people like me tend to look at ourselves in these Nietzschean terms where our struggle is important to our essence. We also see the struggle as an inherent good that enriches the essence of our existence. Tbh, I wanna sit there and shout how wrong Dr. K is but the adult thing to say is : there's a fundamental philosophical disagreement between Dr. K and someone like Des 😊
@@ToanTheNomad this is very reductive. People's identities are tied to multiple facettes at all times. They're tied to being a woman/man, tied to the job you do, the hobbies you have and the like. As an autistic person, your identity is tied to being autistic just as much as it's tied in other people to not being autistic. Being autistic influences how you perceive and react to certain stimuli in the outside world, because your brain is just wired that way. I perceive social interactions, all types of sensory stimuli and my own thoughts in a certain way because I'm autistic. It has been like that my entire life and it will always be like that. I was autistic as a child, I was autistic at the time of my diagnosis at the age of 18, and I am autistic now. It is completely interwoven with every facette of my experience of this world, always. So yes, it is tied to my identity. Just like being a woman, being an artist, being a homosexual is all part of my identity. However, I don't define myself with these factors. I don't define myself with my gender and biological s*x, my orientation and the like. They are all just factors contributing to who I am as a person. And just like I wouldn't be who I am if I wasn't a lesbian woman, but a heterosexual male or female, I wouldn't be who I am if I wasn't autistic. My experience on this planet would be totally different. Heck, it would even be different if I was born in another country. So please take a moment to think before making statements like this.
In all my research about autism, one study really stood out to me, and it supports my personal experience. It found that autistic people empathize with one another as easily as neurotypical people empathize with other neurotypical people. So with autism, you don't have an empathy issue at all. you simply empathize with a different experience of the world.
@@CasualCostawish I could help with a link, but this is scarily accurate. I think part of the feeling of being better able to empathize is the feeling that you won't be judged for being yourself. Some general idea about mental bandwidth being freed up.
That's why I think we should have more people with ASD in the medical field to help others that are dealing with it instead of having people that don't experience this stuff for themselves trying to guess what we go through. You know what I mean? I feel like that would not only just help people going through it but also help clean up a lot of those harmful misconceptions NTs have
I dare say that some of us can empathise with neurotypical people more so than other NT people. Too much to one side of the spectrum even, in that for me I experience crippling emotional pain when I see others in pain. I’m an empath.
Empathy requires separating out different emotions, tracking with what someone else is thinking, tuning out certain thoughts and thinking of an appropriate response. Also nt people don't want to be empathetic all the time to everyone. I have heard some autistic people say they have trouble tuning out empathy when it isn't needed rather than not having enough empathy.
Autisic. This guy's nail on the head. I find even as a high functioning autistic guy where most people don't suspect a thing, I exhibit even traits of heavy autistics. Autism is a really lonely inner battle, and a great source of shame for many. This is an incredible episode please watch it fully if someone you know or yourself suffers. Autism is a thing most won't talk about because we don't expect you to understand. Videos like this goes miles....
I would think "high functioning autistic" means a very, very hard work load. I wish autistic people could be valued for what they are. People. Without autistic people our world would look a lot different since "members" of this tribe has had monumental influence on how things have evolved during history.
@@M_J_nan high functioning means closer to baseline. Like, regular which I don’t think many people are but wtv. It’s non high functioning, or non verbal autistic people who really get tortured tryna get a message across.
High functioning autistics are just good at masking their symptoms. It's funny how you get better when you mask who you are. I tested it a few times. Needless say I'm only friends with eccentric people.
@@M_J_nan I apologize for the language, but I really hate being a member of this tribe due to the all the shame and guilt that acts as a burden with this label. This group has me associate it with synonyms of 'shut-out' and 'better-off-dead', as I'd rather walk out of my hell of a torturous past rather than attempt to regrow eternally burning trees in a vain attempt of reclaiming this godforsaken label.
I often wondered why it seemed to me that I became more autistic in 20s. I thought I was broken or deteriorating as it got harder to keep up the image I supported seemingly well throughout school and highschool. Since university started, i noticed that symptoms were becoming more prominent and it got very hard to try to mask them, to push aside what I feel in order to fit in, support social connections, keep up with academic performance and social performance. My stimming habits started to show up in ripped of skin on the sides of my thumbs and I was ashamed to use a sensory toy in public that my friend gave me, I started to depend more on the comfort of special interests and routine, I couldn't ignore sensory triggers as well anymore and I thought I am breaking down. It was a very relieving surprise to know that it's normal and it's called autistic burnout. I finally connected non epileptic seizures I had to the meltdown, as they hapenned when I was too overwhelmed and I felt the same as the person described it. Thank you for this stream. I've been waiting for a content like this, since in environment without expert support or therapy it's very helpful to learn from you both :)
An absolutely wonderful video and discussion. I'm very tired of Autism being an internet slur people throw around. So many resources these days harm us more than help.
@@rebelmnk2382 people tend to form strongly held beliefs and opinions without any actual knowledge to support them, it's a strange and abundant phenomenon in society. 🤷♂️ To me, the idea of having an opinion without knowledge to support it is so uncomfortable that in order to have an opinion on a subject that I'm ignorant of (and therefore participate in a conversation about it) I have an overwhelming need to go get knowledge so I can quell that discomfort. Living in a very opinionated and destructive society (USA) and left to my own devices while being abused in many ways by it for most of my life, this discomfort has fed my curiosities on an unusually wide variety of subjects for a long time. Also, it has shaped my very inappropriate sense of humor which I use to humor myself and bonus if it entertains others as well. I guess using ones brain is not "masculine" or "alpha" behavior, to be masculine and alpha you must turn your brain off and propagate strongly held beliefs without knowledge to support opinions. And be very loud about it too.🤷♂️
To add to what other comments are saying: Isn't it funny when every professional we meet is adamant we don't have autism...until we're diagnosed. And then they just move past it and don't even acknowledge how gung ho they were about us not having it? Psychologist have to change this culture of confidently speaking on topics and diagnoses that they have no background in.
@@aksprkl6594 once, he had too much of an ego. Fired me as a patient because it offended him that I did not agree to aspects of a physical examination.
@@Tarteh Psychology isn't un-scientific, everything used in modern psychology has a basis in science. The issue is that psychology tries to categorize and subdivide an abstract set of symptoms with so many confounding variables and causes that no psychologist can ever be 100% sure of a given diagnosis. Psychology presents us with a set of tools to understand our mind, as our knowledge of the mind expands, so does our toolset. Unfortunately, and fortunately, research in the field of psychology is still a rapidly developing field. Fortunate in the sense that we will soon have more accurate instruments with which we can assess various disorders and dysfunctions, unfortunate in the sense that the material psychologists learn from is often outdated. The research is currently moving faster than the development of most psychology curriculums, thus leading to much confusion on the subject.
regarding "curing" autism: i love the way i think, but i hate the pain i feel. if a pill existed where my sensory issues were solved, but left the way i think alone, then i'd happily take it. part of my autism involves not thinking about how i'm feeling when i'm processing information, which i hypothesize partly explains why i don't get offended easily, and why i think of things pretty literally. i like this part of me. my brain is very simple: things either do, or don't make sense. when i'm forming responses, i'm also not thinking about feelings/emotions, which can lead to offending people unintentionally. i hypothesize this is tied to my way of thinking: because i don't store others' or my emotions while simultaneously storing information as i learn, i then don't consider emotions/feelings when responding i agree with des. autism is fundamentally a major part of who i am, and it is not something that i can have or not have on a whim. i didn't "get" autism later due to some event; i was born autistic. it doesn't mean a person can't be something by receiving it though. i think a good analogy here is a blind person who became blind later in life due to some event. i wouldn't say they are a person with blindness: i would say they are a blind person. how they interact and process the world around them will fundamentally change due to the disability. blindness has become a fundamental part of their identity at that point
I'm not sure sensory issues are just ASD thing. I think NT people have them too just they are seen a acceptable and common among them so easier to accommodate and they can endure but vent about later.
I’m 24 and I got my diagnosis earlier this year. Living with undiagnosed autism has lead to years of anxiety and depression, and eventually ‘autistic burn-out’. I always felt different than other people, and knowing that I’m not alone definitely helps. I’m still trying to embrace my autism and really integrate in my identity. Educating neurotypicals about our struggles, characteristics and talents is so necessary and helpful, thanks.
"I always Felt different, know Ing that I'm not alone definitely helps" hit me like a truck man. Got my Aspergers diagnosed at 23 and I so feel the same man. Take Care 💕
I am autistic and I feel like im going trough autistic burn-out right now. it started when I was in a environment were there was no way to not be in a noice filled en people filled place. I was basically living on a construction side and in a little vacation home with my whole fam which was for half a year. this wile trying to keep my education going. since than nothing has really been the same. Any tips on like recovering from that?
I was waiting for drK to talk more about autism! Not even therapists realised I had autism and I had to do my research and ask for an evaluation myself. I'm a female so a lot of the traditional autism stuff doesnt necessarily apply either
Same! I found out that females usually have a high probability of going undiagnosed too. Not sure if it's a societal thing or if women are just better at masking, or if the autism just comes off as other disorders. I've been looking into this more since my daughter's diagnosis. I'm going to ask to be evaluated because I'm very certain I'm autistic as well because as I was filling out the evaluation for her, I could have applied so much of it to explain what I went through during my childhood.
Very interesting comparing meltdowns to seizures…. It is difficult to describe the difference between a panic attack and a meltdown, but they are distinct. I feel like panic attacks manifest in my body more - my heart races, I can’t breathe enough, I get vertigo. And while there is a cognitive/anxious component to it, I’m at the mercy of my bodily reactions. And if I let my anxiety run wild, my bodily symptoms get worse, but if I try to rationalize and calm whatever is making my thoughts panic and help myself realize I’m safe, it helps the body symptoms resolve - slowly but eventually. A meltdown is more in my head, and the way I respond physically is like thoughts that lash out impulsively. Like I might need to punch something or scream wordlessly, but it’s all in an attempt to diffuse the complete cognitive chaos that is roaring in my head. And the more input there is, the more my brain absolutely cannot cope with what it’s being confronted with. The smallest input feels like an assault to my cognition until I calm down.
And having schizophrenia is a having and trying to cope with a pathology. Something that isn’t supposed to be there. Autism isn’t a pathology, it’s a neuro-difference.
As a person on the spectrum, being a remote software developer is the best environment for me to function without breaking down at the same time that I am productive on a social level and with my family. It's a full time job I can actually keep, be good at and grow monetarily, I figure other jobs I wouldn't be able to function properly in.
My ADHD makes it hard for me to work from home because of the possible distraction but my autism really wants to because of the safe sensory and social environment. It feels like my neurotypes are constantly at war.
@@imatreebelieveme6094 What helped me was to designate a "Work from home" desk, where you go to work from home and nothing else. If you reinforce this behavior for long enough, then it should just feel natural to focus on work when you're in that space.
@@101Crock Sadly that isn't possible in my current living situation. I can't even get a stand up desk because of the way the rooms are laid out under the slanted roof. Still thank you for the suggestion!
The discussion around 1h20 is so incredibly important. I have personally had some very difficult encounters with health professionals since I was about 19. Multiple misdiagnoses, and I’ve been on several kinds of medications that I shouldn’t have been on. I was run over by professionals so extensively over so many years that now I am in therapy to help me heal from the trauma of “getting help” when I was younger. The absolute worst period was when I was diagnosed Borderline. The stigma was so intense most people who haven’t been there would probably have trouble even imagining it. I feel like the stigma is a tiny bit smaller by now (this was about 20 years ago) but my heart still bleeds for all those people with borderline personality disorder and other stigmatised issues, like ASD, who I know are getting completely run over even now.
this makes me feel slightly better about not getting healthcare for most of my life. because the few experiences i did have, were completely backwards from what should be expected like you described. lazy misdiagnosis because the docs are just trying to see as many patients as they can each day from what i experienced. i had to diagnose my own chronic cluster headaches and eventually treat them better than doctors did and actually improve my quality of life instead of trading one bad situation for extreme fatigue/other health issues(sumatriptan side effects were one of the worst medication experiences i've ever had) with the meds they were prescribing. after the algorithm had seen enough of my comments/post/searches i started getting autism videos recommended to me here on youtube and eventually after months of research + combing through the memories of my past, i realized im on the spectrum. i've been diagnosed with inattentive adhd in adulthood a few years ago but the amount of time and discussion i spent with the psychiatrist was VERY small(two very short appointments before he left the office near me) and long before i suspected autism so i never really had the opportunity or knowledge to discuss the possibility of autism with him back then
@@saturationstation1446 I'm sorry you've had bad experiences too. I've had some good ones too, just not really in mental health. Physical health help has ranged from flawless to abysmal. I hope things start to get better for you now.
What hurts the worst for me (high functioning), was "run over" aka manipulated, used, and lied to, by "friends" and family. Learning that sometimes its ok to "run over" someone back if you know for 100% certain you are righteously justified to this day continues to be my biggest hurdle. Despite childhood ADD, teenage clinical depression, teenage Autism spectrum, and recent schizophrenia diagnosis I am still here... stronger than ever. Even though I hate listing my diagnoses, and even acknoledging them, I am finally starting to. Idk why I just did lol, maybe to make me feel better or break down mental walls idk. Just kinda doing and writing stuff :)
I have loved a man with severe BPD for 4 years. It’s not a death sentence, if you have been diagnosed. There proven treatments to help regulate emotions and you can reach remission in a few short years.
The part about autonomy is so true. It goes for the elderly as well, or really anyone who asks for help. It is so infuriating to see people hired to help the elderly talk down to them, just because their body doesn't work properly. And in non-psychiatric medicine, it is seen as super unethical to ignore the patient's point of view.
People forget that the cute little grandma from across the road is as much of a full-fledged person as you are, and with far more years of mileage, experiences and opportunity to grow and actualise as a person at that. It really pisses me off how we infantilise and dismiss those that, if anything, are the most experienced among us in many ways.
@@JennyDarukat i think its the nature of living in capitalism and being bombarded by constant blaming/shaming in propaganda media(modern "news") if you arent willing to look down on and exploit others, you are going to have a hard time surviving with a decent quality of life. of course that depends on which country you are in and the color of your skin etc. but in general, being cutthroat and unforgiving is the standard way of life.
And a lot of people think in absolutes with this too. You have a pissed off autistic person saying "don't treat me like a ten year old" then the NT person gets offended and goes "oh well you're not getting my help then" and they just refuse to ever help when actually asked. It's as if they'll only operate on their own terms, or not at all.
@@Jenna_Talia Yeah. You are viewed as a burden. A problem to be solved. And you if are too difficult, that is just too bad. Autonomy and respect can be lost unbelievably fast.
This is SO helpful for a "neurotypical" person to listen to. I'm a mum to two lovely sons who were diagnosed with autism/ADHD as adults. Thank you for making this an in depth experience.
I’ve always studied human behavior, since I was a child. It’s one of the biggest reasons I LOVE stories in books and movies. Analyzing human behavior and what the appropriate vs common responses are to different situations. It’s really helped me understand (logically) other people. But even though i feel - deeply - what others around me feel, I still don’t understand people emotionally. As in, I don’t understand people actions when they are based on emotions. I think it’s because I don’t often understand my own emotions, and greatly favor making decisions based on logical analysis. Fortunately, because of how much I’ve studied human behavior and sociology, I can still take into consideration the emotional possibilities of others. I don’t always hit the mark, but I try. It is very exhausting and anxiety-inducing, though.
wow damn, thanks for putting words to my exact experience. kinda wild how everyone feels alone in some way, when others have it seemingly the exact same.
I've lived my life obsessing over trying to put any emotions I feel aside in favor of rational analysis, and then I find I'm autistic and other people don't also do that. Everyone claims to be like that so I just assumed that was the norm, I genuinely cannot conceptualize why someone would not. Why would you want your perception of the world or your behavior in it to be based on something so arbitrary and unreliable?
Haven't watched yet but I'm 23 and 2as diagnosed when I was 20. Best thing I ever did was find other autistics and neurodivergant people. My partner is autistic and understands me so deeply. Trying to be 'normal' is crippling and almost killed me as a child. So I really am trying to unlearn it now and be myself even though I've learned that 'myself' is shameful
"Everyone else already knew something that I didn't know" That hit me so hard in the gut it made my eyes water. Its nice to see someone on the spectrum who is so close to myself in experiences and all the masking and whatnot. So much of what he is saying resonates so hard with me and it hurts a lot to know that people like us suffer and struggle alone for so long before someone notices, or we end up figuring it out ourselves well into adulthood.
I've been waiting for a solid well spoken Dr. K session focusing on autistic experiences and DesMephisto is very well versed and in touch with what it means to accept your diagnosis. That was the most difficult part for me after getting diagnosed at 27. For two years I didn't understand what it meant. I understood what autism meant but I didn't know what it would mean for my sense of self, identity, and how it could improve my life. I'm 31 now and only now starting to make significant changes to better track my mental and emotional health and understand what being an alt-human in essence means in a human world.
Can't wait to have a job and goin into therapy, regardless if depression or autism. I'm 30 and Im feeling everything's broken since I was 15.. Never had friends or relationships because I was too shy, ppl just kept deluding me or I simply felt inadequate and my family never understood what I was goin through. I want to be happy, I deserve that
Randomly came across this video. Only 17 mins in and my mouth is hitting the floor.... this explains so much about me it's actually scary. Think I've to go get tested for this... kinda scared ngl. The way I sometimes feel is that the whole world is a play and I'm the only one without a script.. I've spent my life looking, watching and learning on how to interact with others based purely on based on observation of others. I'm both shocked and grateful for this video. It's teaching me so much
I really recommend watching some autistic RU-vidrs. They really helped me realize I'm autistic. Paige Lyle, Indie Andy, Stephanie Bethany... There are lots of channels who talk about how they interact with the world and how they got diagnosed, it can be a huge help. Wishing you the best
hahah welcome to the party! there's so so so much to learn about autism it's ridiculous, and mental health professionals tend....not to understand any of it
The RU-vid autism community is more knowledgeable and sympathetic than the medical community. Mom of the Spectrum, Dana Andersen, and Autism from the Inside are three of my favorite channels. I think the "not being given the manual thing" gets especially hard around puberty. I've always had these dreams about having an exam for a class that I never went to. In high school I was like a junior anthropologist--analyzing everyone's behavior, like a visiting alien. Luckily, I gave up early on on trying to fit in. I just accentuated my funny weird side and made friends that way. It was a good decision. Pretending to be normal is such a drain of energy.
I used to have a manual wheelchair and I can attest that having a stranger push you around is scary and invasive as hell. These times when autonomy is taken from you by literal force feel so inconsequential to able bodieds but can really mess you up
1:31:21 Des' response in this section hits hard, I definitely agree as a schizophrenic. I have a limiting mental illness, but I also have an ability to function at a completely different level than people who are not schizophrenic. Also from my time with my mental illness I have gained a extremely higher threshold for capability of dealing with anger and depression, my patience has grown, my ability to completely let go of everything going on in my mind and not be consumed by my own thoughts (when wanting to) or negative experiences inside of me head such as rumination, belief cycling, or voices, even my own. My father who recently passed from a rare disease that left him disabled for 14 years had a hat that I loved that said "Don't dis my ability" I fully embrace that and as in a voices and visions group I cofacilitated, we read out of a book that delved into parapsychology and addressing the voice hearer and the individuals experience as more than just a symptom of psychosis. It proudly stated "Mental illness is a sane reaction to an insane world." I feel this was just my path of growth, and if I would not have started this journey of schizophrenia, as terrifying and difficult as it was for many years, I would not be as well-adjusted, realistic, sane, and strong as I am today.
It sucks society can be so cruel to people just for being a little different. I am acutely aware of this problem. Society says "live in THIS box, or else!"
I was diagnosed when I was 3 and as an adult therapist have not taken my childhood diagnosis seriously. Both of my parent weren't diagnosed until they were in their 50s. I feel this guy when he said his only childhood friends would abuse him. My only "friends" I had growing up were my bullies and it takes a toll on your developing psyche. Now as an adult I still struggle with friendships and haven't been in a relationship for over 4 years cus I got tired of being called "selfish." I feel this guy is so many aspects! Thank you for do talks with autistic people! It helps me feel I am less alone.
Des' whole conversation about learning how to mimic the social behaviors and emotions of others, relating it to a sociopath, really got way too close to home for me. I've always felt like my emotions are artificial and that I only react the way I do and socialize the way I do because that is what I have learned is socially acceptable or socially desired by the people around me. I have no clue how to explain it, I only am kind and empathize with them people I'm around because I feel like that's what I'm *supposed* to do. I have no inclination of being nice or even being evil, I just want to feel normal so I react to everything with the goal of blending in. If the norm of society was to be an asshole and hurt people, I hate to say this... but I'd conform to that in a heartbeat because that would work with what is technically "normal". My inability to comprehend my actually emotions, If I even have any, makes me feel like a fucking robot. It's been like this for as long as I can remember and I have no clue why I'm this way. I haven't gotten tested for ADHD or Autism, but feel I definitely have at least one of those. I exhibit a lot of ADHD symptoms such as hyperfixation, terrible memory, and inability to commit to a routine. I also have those socially inept personality traits that Des explains he has. I'm so lost but I'm happy to finally be able to understand how to cope with these different elements of my mentality. I have to give DrK and Des a huge thank you for this video. I'm truly kinda shocked at what I've discovered.
The part about feeling like a robot hits close home, always felt like I was just pretending to be a normal person. I was diagnosed with adhd but am starting to think asd has a large part to play in my life struggles. Good luck man.
I remember when I would visit my Dad as a kid, my brother would always say to me "I swear you don't have any emotions, you're like a robot" and I tried so hard to explain to him that I still feel those feelings, I just don't express them as much as others, or at least in a different way. If I had to guess, I'd say that's where I started to overthink about everything I do around people
It's weird cause this video seems to be pointing out just how much I don't actually seem to care about this shit. Like it's not as if I've ever pulled fake smiles and fake body language just to try to rub off as more amicable. Instead I just seem to unknowingly operate by "this is what I'm like, it's not changing."
@@Jenna_Talia Same here. I realized lots of people didn't like me early on, and just accepted it. I studied "normal people's" behavior very carefully as a teen, but never tried to imitate it. It seemed like a waste of time. When you look at the high-masking autistic people, they put themselves through such unnecessary stress--like scripting conversations before they even happen, just so they won't seem weird. I embraced my weirdness, and even accentuated it. I learned to be creative with it and enjoy it.
My family mocked me for my misophonia for years before they knew what it was. And even though I've built a little bit more of a tolerance to my misophonia now, I still refuse to eat with them a lot of the time because every time I hear them eat I just think of them mocking me and telling me how rude and disrespectful I am.
I'm incredibly glad to hear Dr. K describe misophonia as "benign sounds cause people excruciating pain" because this is what i experience but all I ever read about it has been that it "makes people angry" and it always seemed so belittling.
Being autistic, specifically with aspergers, I really appreciate this. Hearing other people with autism speak about their experiences, it helps illustrate how we think and how we act. This is so inspiring for me. In my case I basically did the same of observing others to improve myself or the ways I do things. I kinda also used philosophy and fiction a lot, defining terms and exploring myself, I ended up "fixing" parts of me that I did not like or that limit me, and improving others parts of me. Much thanks, this awesome to hear.
Thank you so much for this. I'm on the spectrum and had a terrible last few days because trying to force myself to run through walls was making me miserable, and it wasn't working. Some of these ideas give me hope and inspiration - I hope I can hold onto it.
Yay, finally!! Been waiting for you guys to have a video on autism for a long time! I'm 29 too and never got diagnosed but figured it out myself a couple years ago. From other comments, looks like Des did a good job sharing his experience and talking about autism. It's something really misunderstood and sometimes it's very hard to cope living on the spectrum. Especially when you can pass as "normal" but still kinda need help and accommodations still and get judged and taken advantage of or just plain put out for no reason. I work at a professional job that gives me confidence cus I am able to help a lot of people. So I get what he says about charity being a big help to his mental health. I've been learning how to fit into society my whole life and it was impossible to get better without understanding I have autism because I couldn't stop blaming myself and pushing harder to succeed at things I am really not built for. Now I know its okay to just accept myself. Sending love to all of you, thanks for reading my long aimless comment random internet folk :3
I wanted to comment on the autistic person vs person with autism thing too... from my perspective it's really the neurotypical people which are interested in labels and they only seem to matter to us when they change the way we're treated (can't speak for all of autism though). It really comes down to being treated as human and not looked down on for appearances but getting seen for the person you really are. Formalities are basically a game people made up and to me it seems like 95% of what people do and think about and how they identify is just unnesicar people are afraid to just let life be and have a pure experience of the world so they need to hide behind labels, formalities, etc that give people a sense of false security. Kudos to Dr K for trying so hard to understand. The best treatment you can give to an autistic person (I usually use that one XD) is to let them be however they are and let them know they're not flawed for being different without making it weird. We just want to feel included and get to participate without the pressure of having to craft psychological spelunking gear every time we venture into any social realm. Instead of making assumptions about people or being too afraid to say the wrong thing, just talk to us like a normal person but without the hey how are you how's the weather, talk to the person, not the social convention. Also a side note. sometimes I would call myself an "aspie" because I liked the way the word sounded. It's short for aspergers and some people still use this to identify themselves but it's named after a nazi scientist who tortured autistic children as experiments instead of outright killing them. Over 500 children. So please don't use the terms aspie or as aspergers (ass burgers) hahaha and if you meet an autistic person, get ready to have fun because you can let loose and forget about all the expectations and just be for a while too.
Autistic is an identity, but being autistic is a neurological way of being that is separate from identity or ego. So if you took a pill to “cure” your autism, you would be changing fundamental aspects of Self, not just eliminating troublesome symptoms. It’s like, sure, we could take a pill to numb ourselves and reduce outbursts. But that wouldn’t remove our sensory sensitivities, it would numb us to prevent those sensations from building up into a meltdown. But if there was really a “cure” that doesn’t just numb our emotional reaction, but fundamentally rewrites our sensory capacity to resemble that of a neurotypical’s… what use would that be? Honestly. So we can tolerate crowded environments without overwhelm, but now we can’t connect with our environment on as deep of a level. Which, sure, has some social upsides - maybe the farmer’s market is less stressful. But being in nature and absorbing yourself in it is now dulled, too. Like you said with adhd, don’t “fix” the person, match them to the right environment.
Thank you writting this. A lot of people dont get it. Ive been dubbed drama queen and prima donna just for asking for accomodations. I meltdown in secret away from work. It sucks. Only my parents have ever seen me like that. I have a lot of sensory sentivity and yes...while negative stimuli really affect me...positive stimuli like nature give me true happiness. I just love big parks where i can sit alone and just listen to the birds singing and the wind...
@@etcwhatever if someone thinks you’re being dramatic for asking for accommodations, it says way more about who they are as a person than it says anything about you. It’s hard, but I really try to keep this in mind. We are in the right when we try to take up space, they are in the wrong when they try to tell us not to.
As someone that I would say has a partial diagnosis: My GP referred me to a psychologist for a proper diagnosis, however, I was pretty much snubbed off by the receptionist and never heard back from the clinic and that was early this year, didn't try to make contact again because of the point des made, which is once you're an adult there is no treatment. can't get help in school, there's just nothing really there and I know my immediate family has had issues with autistic people in the past, so they don't know about it either. I agree with them both about identity. I agree that autism is a part of our identity. it's how we've grown from a young age, it's what we know and it is beyond a challenge to change our neurological formation. Like the brain does develop in a specific way with autism, more so seen in males than females which is generally why studies claim female autistic people are better adapted socially. that's our personality being directly impacted by this malformation in the brain, we can lose aspects of ourselves because of it while developing. where socialising might seem easy at 8, we go backwards and struggle to interact at 10. However something like social anxiety caused by PTSD can be improved or even with autism right. I see a neurotypical impairment as being part of an identity, be it autism, ADHD, Borderline personality disorder. But something like social anxiety caused by PTSD, you sort of just choose to make it your identity. it doesn't change the severity of what they experienced, but it's something that can be changed and eliminated one way or another. What I'm trying to say is I'm not social anxiety, and someone isn't PTSD because they have it. they are usually qualities caused by an external sauce. In this case, like with des and having to calculate his interactions, my social anxiety comes from autism and not being able to understand other people as easily as someone who is neurotypical. however, autism, BPD, ADHD, etc., is a part of identity because it was developed with the brain. As much as borderline personality disorder can be caused by trauma, it's the way the brain has developed/ moulded because of it. I view it as brain developement is apart of Identity, whereas a change in ones sense of self because of a trait that is brought in by something externally and not because the brain has been moulded by it, is a quality and not an identity. I can treat my autism, someone can treat ADHD, borderline personality disorder, but social anxiety is a quality that can be "cured" or eliminated.
Something I think would help a lot is having more people who actually deal with a lot of these metal illnesses themselves in psychology positions. Especially ASD, having an ASD therapist helping other people with ASD might be way more beneficial because of that level of understanding
I watch most of your videos on here and this has definitely been the most useful and relatable video for me personally. Thank you for platforming such a wonderful autism advocate, I'm going to sub to him on Twitch 😊 I was diagnosed with autism at 30 (now 32) and also adore streaming as a platform. Lots of like minded people!
His experience is very similar to mine. I teared up at his description of how he had to condition himself not to display any "undesirable" behaviours: I have done this too but it's so ingrained in me now, it's not even happening on a conscious level anymore. Autism can look like many things and yes you can have it and not know and just think that you are broken for not being able to function like other people.
All right, so I'm autistic, just discovered that this year, and if I was offered a pill to cure it, I wouldn't take it. Here's why. - I'm 40. I knew I was different well before I knew what to call my difference. It's a part of me, and suddenly learning to live without it sounds dreadful, now that I've finally accepted myself as who I am. - I like who I am. I like that I don't really need human interaction, I like that I can hit flow state very easily, I like having my few intense interests. - Obviously I would like to have my sensory sensitivities removed, I don't really like being aware of every single sound all of the time, but wouldn't that affect how I perceive music? Because I fucking love music. Music gives me the good feels partially because I'm able to appreciate its complexity. - It would also be a convenience to be able to read body language and social cues so I wouldn't have to ask people to stop beating around the bush all the time, and I suppose it is a skill that could be learned, but I just don't care enough.
This hits home so hard. The 'extreme yawning', the 'fake friends', 'meltdowns' ... and the interesting mechanics for dealing with the other challenges growing up. 30 YO autistic ... Basically learned different tools for those situations, like for the 'fake friends', learned boxing for dealing with bullies, conditioned myself to see how people are for a long time before even tryin to make friends... For 'meltdowns', learned to just leave (whatever the circumstance, no matter how socially unacceptable - as the alternative is more socially unacceptable)... All of these mechanics also contribute to being seen as 'weird'.
I was diagnosed at 38. I truly had no understanding of Autism and would never have guessed I had it. It was another Autistic adult who continued to point it out to me and explain myself to me and it blew my mind that someone else understood things about me that I couldn’t figure out. I’m so grateful for her because once I had this diagnosis and looked back on my life, it all started making sense and I felt so free. Growing up not knowing this important thing about myself was extremely traumatic and lonely and at times brought on passive suicidality. I was excellent at masking because I was forced to attend a very social church my whole life which was a safer place to learn and it helped me to learn to mask, but in other ways burned me out so badly to the point I don’t like going to church, despite wanting to worship. Anyway, the pain came from having a huge heart and great desire for connection and yet run in to scenarios where all of a sudden a friend would act as if I was bad or did something to hurt them. Their responses didn’t match my intention or who I was and yet no one would ever explain what it was that I did that was wrong. I would rack my brain and try all sorts of things to prevent it from ever happening again, but inevitably I would seem to hurt someone again. It was incredibly painful and the last thing I would ever want to do is hurt another human being…and if I’d already done everything I could to not, and it still happens, then the only solution was to not exist anymore. Then neither of us would be in pain anymore. Since diagnosis I’ve been shocked to learn how many Autistic people are actually some of the most caring and sensitive human beings there are. It’s really beautiful and I’ve grown to love this part of myself. I still struggle with neurotypicals, but at least now I can understand what may be happening in the misunderstandings and that there’s hope for learning how to navigate that better. The most hopeful thing for me was finding that it wasn’t that I was super weird and alone and could never be understood….but that there’s a huge community of people just like me sharing traits with me that I thought were only unique to me. I’m so excited to dive in to the community and keep learning about myself and be around people that can appreciate me and the way I think/feel. Its been difficult to realize how much I had been masking and how burned out I am and that its not just a bump in the road, but it’s that I have to nurture myself in a whole different way by sinking in to my autism and learning where my boundaries are. I had a neuropsychologist who was really helpful in showing me how many sensory problems I have. I’m very light sensitive. I can be in a perfect mood and with light exposure I’ll start to get really irritable and then anger….but when he would shut the blinds, it would just melt away. For years I thought I had a mood problem, but it was a sensory sensitivity to lights. It really blew my mind. I think it’s so important for autistic adults to share about our experiences because we can save a lot of kids from living traumatic lives and for the adults that still don’t know, we can save what’s left of their life. We also need to push hard for acedemia/research to catch up because they know so little and they perpetuate myths about empathy and things that make others think autistics are bad. I also unfortunately picked a career that was horrible for my autism and I’m having to start completely over so I don’t keep harming myself. Its a career that keeps triggering fight/flight responses and burn out and i could never have quality of life….but it is hard to give up on something I wanted so bad and worked so hard to get…and that I’m good at….but it does feel so good to finally listen to my body and do what is best for me overall. The diagnosis helped because now I know it’s my physiology and neurocircuitry and not a lack of will/ability and it no longer feels like a fight that needs to be fought. Its a peaceful realization of I did it, I can take what was good from it and be thankful for the experience, but now it’s time to nurture myself first and make career second…and surrender to whatever that will look like at a level that does not provoke my sensitivities and cause burnout. As for meltdowns, mine feel like a volcano eruption of mixed emotions that are so strong that I cannot name or verbalize them and I go mute and have to isolate myself, it can be hours or a full day, maybe two before I feel like I can speak again and when I do, I do not acknowledge the event as I still have no words for it. I haven’t had one since diagnosis so I hope if there’s a next time I can start to learn how to handle that better. Growing up adhd and autistic i instinctively learned to believe that things are my fault so all of my negative feelings even if they should be directed at others who harm, they instead turn inward. It causes a lot of harm to myself and I still haven’t been able to stop directing it all inward. I’m working on it. Another thing I’m still struggling with is how to wrap my head around the neurotypical reactions I get sometimes that indicate I did something wrong…I know my heart and my intentions and believe I’m a good person….but if I’m still causing harm to someone (even if they’re misinterpreting me)…aren’t I still bad?….it makes me want to totally isolate and I feel like crap. Its scary to believe you are one way and come up against the possibility that you aren’t what you think you are. People are feeling hurt so I feel that I can’t believe I’m good anymore unless I isolate or only socialize with other autistic people who won’t misinterpret me. I’d like to hear Dr Ks take on that last bit.
I agree autism doesn't need to be cured. It needs to be adapted possibly because autism brain is very beneficial to the person as well as the community as well as the world. Just like ADHD has its value. There are things that people can do to put in place to make the ADHD brain work even better and there's nothing wrong with that. Same with autism. If you can make something work better than it should be done. I also feel like autonomy should not be taken away from children or from people with disabilities or people with different minds, different brains, different ways of thinking
I have 2 videos I show people to help them understand how it feels to be in a meltdown. The first is a washing machine on spin cycle with bricks in the tub so it's off balance. The washer goes and goes and goes until the machine tears itself apart. The other is the kitchen scene in the first season of Legion. The first time I saw it, I was totally unprepaired and ended up having a mild meltdown because it was so visceral. Therapy has been a huge help. I lucked into a doctor who knew what she was looking at. My therapy was more about unmasking, allowing myself to stim, being more self aware of my limits, and learning self acceptance. I finally saw that while I might have deficits in some areas, it's because my brain is hyper specialized in other aspects to the point of being superpowers. The way I think about myself now is that I'm running a heavily modded version of Linux where neurotypicals are on Windows, Mac, and Android. It's not necessarily user friendly but if you take the time to learn, it makes sense. I'm fortunate to own my own business in a field where neurodivergance is the norm. A big part of the joy I find in it is that I've created a space where everyone can thrive and they get to learn to use their own superpowers.
I absolutely love the interview. I got diagnosed with ASD at 41 and I relate heavily to DesMephisto's experience. But the question about the pill healing autism and if it is wrong stop being who you are. I don't know man. The rates of ---self-endings--- in autistic people are high enough. I think we should better accept that autism isn't curable. Autism isn't just disability. It can also bring unique and needed angles to things. You can't just discount all the good stuff autistic people brought towards the world. Also yes I would take the pill immediately. 😶
This was very helpful. I too hate the idea of “never give up on your dreams”. For the longest time I was held back because I had this belief. It’s not always true that you should never give up and that’s ok. Sometimes, it’s ok to let go of a dream that doesn’t suit you. Yeah, it hurts like hell, but it’s ok to cry and move on. I’m still working on that but this was a great reminder.
I was treated appallingly due to 'behaviours' and was even labelled a psychopath by my family .I was shunned in school work and all relationships .I ended up with severe substance abuse disorder. I was admitted to hospital for what must have 17:36 been about my 40th overdose I begged to have a total mental health screen and was diagnosed with Autism at 50 I am slowly trying to salvage what is left of my life .I do feel angry .Btw I managed to get two degrees despite all this .
when i knew i was autistic that was such a big relief , like i finally knew the reason why "im not good at being people" , it explained literally everything , but in the same time it was not a happy day , people think that we declare ourselves autistic after watching two tiktoks of NDs , but i know we've all been through a loooong journey of introspection and investigating our childhood and asking relatives about how was we like as kids and re-opening old files ect , they think its cool and we're bragging about it, i see the hate tiktoks against self-diagnosed autistics invalidating our experience and say about those tiktokers who are spreading awareness that they want attention and it was like trendy and cool and disrespectful for "real" autistics ? , like wtf ,its both mean and dumb and narrow minded , first its not cool or nice experience to know no matter how hard you tried its because your brain is the way it is you're really are different and there is no way to change it ,its also a huge step forward to adapt and know finally our needs and boundaries and not push ourselves to be like others want and finally caring about our needs to prevent meltdowns and burnout , second those people are worst than ignorants , they're harmful ignorants spreading misunformation and reinforcing the stereotypical autistic image of the white little boy chewing on his trains and rocking back and forth in the corner and not making eye contact and not talking to anyone, sorry to break this to you , but studies evolve and people are finally seeing it as a spectrum , sure we have a set of same traits but they vary in intensity and not all of us have all of the same traits all at once , its a huge caricature thanks a lot for this precious video doctor❤ finally a therapist approaching the subject with open mindness and really listening to an autistic adult
I appreciate these kinds of conversations SO much. I’m a 20 year old girl just diagnosed with autism. How much of “changing” yourself is returning to yourself? Using the autism diagnosis acknowledges how the way society is set up is actively damaging to us, and gives everyone context as to how to understand and aid us.
I believe Autism is one of those very strange cases that can come with some serious negatives, but also some serious positives. Whereas with someone missing a limb can learn to accept and even appreciate their condition, there's no denying that the limb is missing, that their quality of life would probably improve if their disability was fixed. Sure, some would choose to continue living without the fix, but that comes from an appreciation of the disability and how it forced them to grow. This is an extreme example, but I think most disabilities of many sorts fit this line of reasoning. With Autism, it's different. The neural pathways formed and unformed in autistic individuals (myself included) have some serious ramifications (to varying degrees, depending on the individual), but can also have some unique benefits, many of which form a persons identity. For some people, their autism is part of what defines them, and to try to cure them would be to take away what makes them unique, what makes them, THEM. And I understand your view of identity, but think of it this way, would you fix something wrong with you at the sacrifice of something that benefits you? If you lost your sight, but gained a superhuman sense like Daredevil, and someone offered you a cure, but you would lose your superpower, you might not take the cure. I think that's a more apt analogy than comparing Autism to any other disorder. And perhaps that's not really as important in the identity conversation, but it's still a determination of whether you want to sacrifice one thing to gain another, or stay the way you are, whatever flaws or positive traits you have. That being said, being on the spectrum myself, I don't look at a "cure" or "prevention" or "treatment" as necessarily bad things, or necessarily good things. I think it's a complicated issue that can be beneficial for some, whereas for others it would be beneficial NOT to partake, but the real tricky cases are those that fall into the gray area. I'm all for looking into curing, preventing and treating autism, but knowing which cases to apply them to or not is where you run into issues, especially prevention.
Only 15 minutes in and this put words to so many things I've experienced (am experiencing) that I didn't have before. Thanks so for coming on stream, Des.
I finished the whole video yesterday and it is mind-boggling to me how closely everything described matches my experience, including the stuff about virginity. I wish I could just show every person I interest with this video
Great session! For my part, as someone on the spectrum, I try to avoid saying "I am Autistic" because I try to avoid labels in general. Because I'm semi-terrified of all social interaction equally, as well as noticing every little detail about everything, I can't help but treat everyone as individuals, but "neurotypicals" love their labels and love to be able to discount people once they are labeled. Most people aren't educated enough about Autism to not immediately react with either revulsion and fear or the babying that was mentioned. I've mostly avoided talking about having it.
@@kylerBD Just because you're Autistic doesn't mean you can't have a life. This is just another form of infantilization, which in large part is what this interview is about. btw I'm Autistic
@@hamperhamp895 I'm autistic as well and I dont see any form of infantilization here. He never implied that autistic people normally couldnt lead their own life he was giving props for enduring hardship in order to accomplish his goals
I'm really happy this interview took place. It really brings home that proverb about how if you mind is a bowl, how can you fill it with something new if it's already full. So many problems we have can be distilled down to misunderstandings based on preconceived notions. Be clear and be respectful. Asking what someone meant isn't "fightin' words" and refusal to explain isn't always malicious. Always be willing to stand in the other's shoes, see where they're coming from, and communication can be a lot easier.
Des's talk was really good. Inspiring how well he understood his behaviour in relation to autism. It gave me hope for the future. It's a frame to show where it could go mentaly in order to enjoy life again and according to Dex's answers a very pleasent place. Thanks to both, to have free acces to such a worthy dialogue and words.
People want to talk about Autism, but don’t want to talk about everyone being electrocuted BECAUSE they’re autistic. Nobody wants to talk about the misrepresentation, nor the bull that we, as people with autism, have to go through. Mad respect to the both of you, because this needs to be dealt with accordingly
@@desmephisto3121 Thank you so much for doing this interview Des. I am going through a lot of stresses right now, and it helped to see someone outwardly similar to me being calm and thoughtful. I imagine this will be so so important for many.
I'm autistic and I live in the state, a few towns away from the hellscape they shock autistic people for being autistic. It's called Judge Rotenberg Center or JRC. It's existence makes my blood boil.
I literally started crying more than a couple of times during the course of this video. As a newly diagnosed autistic myself, finally finding people whom I relate to and can explain many experiences I’ve had throughout my live, while just thinking I was bad at being human. It is kinda painful but so enlightening. It’s going to be a long road to understanding who I am, and dealing with all the trauma that comes with being different. But this video helped a lot, so Thank you. Truly.
I sometimes look at myself and wonder if I was misdiagnosed with autism, but then come across videos like this and realize how stereotypical my experience was for autistic people. I appreciate you showing these videos.
Ahh I feel this. I went through a large part of my life basically denying that I'm AdHD and autistic spectrum. Little did I know I'm highly ADHD and pretty badly on the autistic spectrum as well.
I'm in the sprectum too and this was one hell of an insight. I relate 100% with Des. I wasn't expecting much from the video but he is a lot of levels ahead xD This channel has given me the best content by far, I wasn't even expecting this from youtube.
Constantly running into walls sounds a bit like that sports thing where they say that a true master has failed more times than you have even tried. Shame that academia and jobs don't always let you fail as much as you might need and make you feel guilty about failing.
I definitely know I could succeed in academia if I had a PI willing to invest extra time and put up with my failures. Without that though I have next to no chance. I think failing constantly and finding the motivation to continue is the sign of grit they've conflated with ignoring your own health at all costs.
The metaphor for meltdowns at the end is the most accurate thing I’ve ever heard. I’ve used it to explain stuff to my partner and he gets it now. So thankful for this interview
I am going to have to rewatch yhis a few times. There is so much good information . I was diagnosed at age 57 this last April so am still navigating figuring out who I am.
My autistic (AuDHD) meltdowns tend to be in the form of tears as I continue doing what I was doing. I want to continue what I was doing and I try so hard to finish what I was doing. But I cannot stop crying. Nothing will reach me. Everything is foggy and my brain is really loud and almost like it's buzzing. And I do not want to be perceived. If someone does notice me, I will cry harder and try desperately to isolate while continuing the task I was doing. I've always been like this but only recently discovered those were meltdowns. Sharing my story to show a different way meltdowns can manifest. Also to add, former "gifted kid" and I can hold a job but am constantly tired and fighting off meltdowns. So even though my work isn't physically demanding (STEM) and I enjoy it, at the end of the day and on weekends I don't have the energy to do anything else.
I loved this! This might be the best interview yet... I laughed, i cried, i learned, and i found inspiration. Truly great stuff. Thanks Des and Dr. K for an amazing conversation!
1:36:00 "There's a part of me that feels like if you took my medical license away, I would not be me" I must interject here that the license is simply a representation of knowledge, inner traits. Taking that away doesn't affect you at all. Autism is more than a label or representation. It is already a conglomeration of traits that make one who they are. I completely agree with Des. I would not take the pill, either. I would feel as if to do so would be an attempt to lie about my being.
This video has helped me understand myself so much, thank you for this video. I don't know if I have autism, but this channel is brilliant at exposing the struggle of mental health and how society acts inappropriately to people who are already struggling. Thank you so much, i'm going to get a test for high functioning autism now! I am so happy I found this video! Thank you so much Healthy Gamer GG I hope i can help people like how you have.
Helping others is always seen as selfless, but to me the joy I get from helping others is great. In a lot of ways helping others really helps me help myself. The whole philosophy that nobody can truly be altruistic as we gain intrinsic value from our actions. It isn't the soul reason I do it, but I still have to acknowledge it.
He so well articulates what it is like to mask. The stereotype is that those socialized as “traditional” females learn to mask. Stereotypes limit the assessment and diagnostic process. I was missed because I was too agreeable and subdued. My older son is being missed despite my efforts because of the stereotype of the overactive, disruptive, heavily stimming male. A person shouldn’t have to be nonverbal or have significant activities of daily living support needs to be diagnosed. A person shouldn’t have to be bullied for being different, to be abused repeatedly, without knowing why they are being treated differently. When your senses and social life experience is not what other people live, not knowing why feels like a lifetime of gaslighting. Something as simple as a ceiling light that doesn’t bother the average person can be so distracting and baffling. It’s a constant questioning of why it is that way and how can I get accustomed to it / tolerate it.
I love the analogy of HP and Stress pools to cope with situations. It makes understanding how to deal with those situations easier. Video game mechanics are oddly very helpful in describing these kinds of things.
@ 39:00 - paraphrased “The ability to grasp what is happening has grown more difficult as I have gotten older” Damn I think this one explains why We are all gathered here Today
The issue with ABA is that it purposefully disregards the feelings and thoughts of the person. It is PURE behaviourism. So it doesn't help the person to COPE with the behaviour or to be desensitised to where it doesn't hurt (there are studies on desensitisation and how it doesn't work in Autism), it only targets the behavioural reaction to the sensory overwhelm (or the stimming to seek the sensation). What it teaches someone who is Autistic is that it doesn't matter if you are being hurt, you WILL behave as you are trained or you will suffer more. The creator of ABA didn't even acknowledge Autistics as "full" persons who could feel emotions or sensations. It is extremely problematic in this view of a person as a "black box" where you can see the antecedent, behaviour and response, but there is no way to know the thoughts and feelings of the person, so act like they don't exist. Given how many Autistic adults have been through this now, who have learned to communicate verbally, with signs or with computer assisted technology we actually do have a way to know. Given how many people have been subjected to it and clearly begged for it to stop, it didn't even need to go on this long as the thoughts and feelings were pretty clearly communicated right up to suicides over the emotional damage done. As an Autistic 4th year psych student my thinking is this: where a behaviour ACTUALLY needs to be changed in the first place (and what ABA "therapists" think should be changed is often something I vehemently disagree with) we have far far better approaches in psychology that have better evidence of efficacy, respect the person (no matter their age) and promote healthy values that do not prime an already vulnerable person to be abused by others and also to neglect themselves. "The problem" with ABA is the ruthless application of pure behaviourism with utter disregard for the dignity and wellbeing of the person, who is deemed not even a person and without the emotions and thoughts to be allowed agency or kindness.
Per, why is promoting the ability to identify autistic pregnancies so they can be aborted an issue? (Because that seems to be the main method being looked at). The social impacts of being Autistic is where most of the issues are. Autism seems to be part of the natural divergence of neurotypes, so it would make more sense to focus research on helping with the issues that make Autism difficult to live with and use some funding to work on getting neurotypicals to be less rigid and bigoted towards people who are different would be nice. (Not all neurotypicals, and neurodivergent people can be just as bad, I am just feeling a bit snippy from minority stress).
14:10 i am literally experiencing it now, finished school and feel lost, like all of my my reactions to situations or how i would behave, all feels forced, that i dont know how i should behave in that situation, i really feel anxious about interview and that i just dont like being there, i feel anxious, i wanna internaly cry or scream, cant really tell how i would react now (after 1year). I found copying mechanism to live my world and focus what i want in it, but the problém is thats not the way i will be able to survive for múch longer (because of Bills) but there is no way i can imagine actually being in those situations, sometimes it seems so easy that i just send my curiculum, but as soon as i wake up i "feel" something is wrong, that is not a way i want to go nor even support
Go see a doctor. Don't listen to this and think you might have it. Power of suggestion. As it also sounds like normal situations in some cases too. Hope you find what you are looking for
I am 39 and I am suspecting I might be on the spectrum. I only learnt recently how often autism isn't diagnosed in females because girls mask much better than boys. I started working on getting a diagnosis (ain't easy but I'm quite set on going thru with it). My brother had suspected Asperger's when he was a teenager and I was already going thru my first major depressive episode (which in fact might have been the first major shutdown). No one followed with his diagnosis and I had some thoughts about myself but the knowledge about autism back then didn't really indicate I might have it. But I started joking that if I was a boy I would most likely be autistic. But now it seems autism in females looks a bit different on the outside. And so many things about being on the spectrum explains many things I can't get over. I'm in therapy for years and I have managed to learn a lot but there are some things that still don't make sense taking only depression and anxiety into account. I feel completely stuck in my life atm.
I strongly believe that autism is much more frequent than we give it credit for. Getting an evaluation will be hard, but definitely look into the autistic community, I'm sure you'll find a lot of comfort talking with others about our experiences.
I was diagnosed a few months ago, and following my journey, a female friend of mine became interested in getting diagnosed herself. She's been told she has anxiety disorders, borderline, depression, you name it. But after a few months of research and coming along to a couple of sessions with my therapist she found autism fit better than anything else she'd ever heard. Since the switch to viewing her life as "an autistic person" instead of "constantly failing to be normal", she's made a lot of positive improvements and is much happier. It's very true that it's massively underdiagnosed, especially in women. We were both dismissed by multiple "professionals" before someone with actual experience spent 30 minutes with us and confirmed the suspicion had some worth. My advice is to just read as much as you can from other autistic women, and see how well your experience matches with theirs. Find some "diagnosed at X age" stories with X being roughly yours and check if their childhood experiences match. You could probably find some right here on RU-vid. Really, it's a function of brain construction, right? As much time as we spend with a pet, we will never truly *understand* what it's like to be said animal. In the same vein, don't allow neurotypical people to redefine an experience it's physiologically impossible for them to have. One of the central mantras of getting diagnosed for us has been "Well, yeah..." As an example: I spent most of my teens depressed and anxious. Well, yeah... the world is built for neurotypical people and as an undiagnosed person you spend all your effort swimming upstream and failing a lot and you feel bad about it. But being depressed is a logical response to the futile situation you're in. It's not a failure, it's a symptom if anything. Best of luck with your journey, and remember you're not alone! 💪🧠
I am an old trans person with the neuro psychological testing autism diagnosis as well. It is a difficult situation because autism requires service support for us to survive. Service support, healthcare and adaptation of environment some of us can modify, adapt and thrive. Autism is a spectrum. Everyone has autistic traits to some degree but the cutoff from neuro divergent strong traits into mild autism is the requirement for service support in order to survive. We die younger often in our 50's. Usually the age when our parents our greatest supports leave earth. Hard.
I've never been formally diagnosed with Autism but I've always suspected that I am in the spectrum. And I don't think I've ever had my internal experience stated so succinctly than in this video. Like my constant state of being as i go through life is i just don't....understand, and it's a very abstract and hard to express feeling. But Dr.K's analogy with the "watching a movie with the sound off" hit me like a ton of bricks, that's exactly what it feels like. There's *something* wrong or something that I'm not getting that I just can't nail down and it's incredibly frustrating. And then Des' discussion about feeling like a sociopath because he learned social behaviors by simply mimicking what other people do also hit me pretty hard, because I've often worried that I'm a sociopath but it's incredibly comforting to head that experience echoed by someone else. Thank you so much for all you do Dr.K, I've been working on my mental health for a long time and I've been in a bit of a backslide lately, so I'm incredibly grateful to have found your channel. Never change 💜
I'm 28. I was diagnosed at around age 4 or 5 but wasn't aware of my diagnosis until I was around 20. This discussion with DesMephisto means a lot to me. I'm hoping to see a mental health professional when I can afford one and get a more up-to-date prognosis of how my brain is functioning.
Hearing about the sensory overload thing really struck me. My family members mocked that exact issue I had with certain sounds (loud chewing and slurping noises). They make me queasy and angry. I can't help it. They would either tell me to basically piss off or they would make the same sound even louder.
I like the diversity of having autistic minds in a pool of people, some of the funniest people I know are autistic or I think of the contributions autistic individuals have made due to the style our minds operate in. I just wish it was a safer environment because a lot of we bring to the table is unique, it'd be a shame to lose that or have one group make the decision to purposely erase it. We don't even fully know what autism means in a sense when its only operated through survival rather than in an environment thats comfortable to navigate. Lower sensory triggers, yes. Dedicate certain spaces for decompression, yes. Educate people on good responses for a shutdown or how to help. I'd like to see these efforts made. Part of self regulation is getting a chance to do it but we haven't been taught or allowed to. That might also help half the issue.. Accommodation is everything. I'd like to see us get that support and work from there. As said before, sometimes we're literally triggered on purpose. What happens to the community if we're supported on purpose and experience less triggers as a result
I’ve been seeing someone who’s on the spectrum for almost 2 years now. It’s been very challenging in ways of communicating feelings as well as meltdowns when I won’t hear from him for a while.
I wanted to comment on the autistic person vs person with autism thing too... from my perspective it's really the neurotypical people which are interested in labels and they only seem to matter to us when they change the way we're treated (can't speak for all of autism though). It really comes down to being treated as human and not looked down on for appearances but getting seen for the person you really are. Formalities are basically a game people made up and to me it seems like 95% of what people do and think about and how they identify is just unnesicar people are afraid to just let life be and have a pure experience of the world so they need to hide behind labels, formalities, etc that give people a sense of false security. Kudos to Dr K for trying so hard to understand. The best treatment you can give to an autistic person (I usually use that one XD) is to let them be however they are and let them know they're not flawed for being different without making it weird. We just want to feel included and get to participate without the pressure of having to craft psychological spelunking gear every time we venture into any social realm. Instead of making assumptions about people or being too afraid to say the wrong thing, just talk to us like a normal person but without the hey how are you how's the weather, talk to the person, not the social convention. Also a side note. sometimes I would call myself an "aspie" because I liked the way the word sounded. It's short for aspergers and some people still use this to identify themselves but it's named after a nazi scientist who tortured autistic children as experiments instead of outright killing them. Over 500 children. So please don't use the terms aspie or as aspergers (ass burgers) hahaha and if you meet an autistic person, get ready to have fun because you can let loose and forget about all the expectations and just be for a while too.
Okay got to that part of the interview and it made me realize that I prefer to be called autistic rather than a person with autism is because I personally don't feel like autism is a disability, I feel like it's just another kind of person, like how you some people are good visualizers and other people aren't. I only feel disadvantaged because of the social expectations and treatment, I don't feel like my mind is inherently less and I wouldn't want to be "cured". I want to be recognized that I am a regular human that is wired different and has my own strengths and weaknesses. I have a genius IQ and am very competent, yet I struggle with the social aspects not because I am dumb but because I am treated differently for appearing different. The only thing that seems like an illness is that my system burns out but honestly I feel fine in nature, it's human created environments that make me unable to function. I am more sensitive and not numb. People don't realize how incredibly stimulating and cut off from nature our lifestyles and way of viewing reality have become as a society. Being autistic, neuroligically speaking, I am hyper aware of how things affect my body, I can feel every vibration from traffic, smell and feel and taste the chemicals all around, feel the unmaturalness of air-conditioned air. Western society is great in a lot of ways don't get me wrong. But hear me out, the problem is that the whole aesthetic of our society creates a psychological ambiance that creates a lot of imbalance and the natural response is to become numbed to the stimulus in order to function. Because autistic people cannot numb themselves in the same way they experience a lot of sensory issues from the unnaturalness of it all. I can see the effects of this tuning out of the body and senses creating rifts between people and creating a overly fight or flight driven society. We've lost touch with the art if living in harmony with our environment and if we took the time to craft a world that energized the senses and empowered our psychology instead of draining and scattering and mimbing our senses, then we would be able to realize human potential on a different scale. People think autism should be erased, but we are canaries in a coal mine, in a way, because we can feel when the world becomes disharmony around us more acutely. Technology will destroy us if we don't learn this balance so please don't think autistic people need to be changed. We're part of humanity too and have needs and as well as unique gifts just like everyone else.
I could feel Des when he talked about the full time work and marriage. The pain is so all encompassing. Because we are told as "men" we have to provide. Thanks for sharing that. Working on a diagnosis for myself. At 39. Did anyone else get distracted by the background noise during the meditation part?
Des thank you so much for putting your story out there. I'm at a point in my life where I've been diagnosed with ADD & Borderline. I've had years of therapy and I'm looking into getting tested for autism (my brother is diagnosed); however, I never quite fit the stereotype of anything. Hearing your struggles, but mostly the self acceptance you've worked so hard for, is really inspiring! It's a tough world if you always feel behind, left out & a stranger to others so thank you for your wisdom!
On the topic of potentially curing autism. When I'm suffering I might actually think that getting rid of the parts of me that cause pain is something I would like to happen. But then there is the case that getting rid of that pain might also mean losing something that is important and we really have no way of knowing that. There is this scene that happened in World of Warcraft Legion that really hit me of how close it feels. Here is the transcript of the moment: Xe'ra: Your old life has passed. The Light will forge you a new one. Illidan Stormrage: It is not yours to take! Xe'ra: The Light will heal your scars. Illidan's demon hunter tattoos are shown to be "filling up" with Light. Illidan responds in a distorted voice. Illidan Stormrage: I am my scars! Xe'ra: The Light is your destiny. Illidan Stormrage: My destiny is my own!
It's a weird thing right. I've changed a lot over the last 10 years, made some mistakes and learnt from them to become a better human. Would I like to erase those mistakes, yes. But if it would erase what I learnt I don't think I would change anything really.
@@ADHDisYippeeeeeeeeee I agree that no one should fight the research. It's not like autism or any other condition related to brain differences needs to be cured as in eradicated. They need to be understood. Besides, within autism spectrum there are different levels of disability and anything that can help a person have a fulfilling life is good. I myself am still in the diagnostic process and since the diagnostic criteria in my country are not well suited to diagnose adults it's still inconclusive if I am on the spectrum or not. The diagnostician is certain I am not neurotypical and still is trying tests to figure me out. But I have many autistic traits... I am apparently "too social" for the criteria. Anyway, from my life experience what I would like is to somehow fill the gap between me and other people. I crave some level of social interaction but it's just difficult and the reasons are not easy to spot. Learning more about autism is already helping me with that because I am finally finding an explanation why I've feel that people assign completely different intentions to my behavior than when they are or why I don't get a lot of social cues. I have social anxiety because I feel I will do something wrong as I often did something wrong and was scolded for that or experienced something unpleasant. I've become really observant but I need to put a lot of conscious analysis in order to figure out how to act in a new situation. And after doing that I feel tired. Today I've done some more tests about emotions and it's strange how I start to feel discomfort when I have to choose between very similar emotional concepts. I have the theoretical knowledge about those concepts, I think I even feel them but I am confused when I get to choose. I actually feel physically tired after one test like that. Even tho I really love test and learning about myself. And it's not like I need to be cured - what I need is tools to operate this thing called my brain because models I am getting from people around me feel insufficient. I also imagine that I am difficult for people around me so I would like to be able to tell them how to make our interactions easier. That for example I might need something explained a bit more in details so I don't get stuck not knowing what people want from me. Most people don't think about it because neurotypical communication usually doesn't require so much details.
I love how here Cool-aid man through comes out as a serious term. On the serious side, I have strong suspicions I'm on the spectrum and I find this very useful.
I ran into that pushing through walls. Then figure out that I don't have to. For longest time I thought if wasn't hard it wasn't worth doing. So hard was Kool aid man going through the walls. Then a conversation about attending church with friend made realize I don't have to do the hard things. So took the easy path. Seemed weird but I started doing really hard things with easy on the easy path. Those hard things didn't feel hard to me. I felt bad about it. Easy should result in great success yet it did. Thing is I talked to this other guy and he envious of friend who seem to have to so easy in Tech, I know the struggles that friend had. So I just kept my mouth shut on how easy the courses were for me. That showed my path was difficult for many but for me really easy. It's not lazy to take the easy path and stop pushing through walls.
