Autistic Burnout: Defining, Measuring, and Understanding with Dr. Dora Raymaker

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  • เผยแพร่เมื่อ 18 มิ.ย. 2024
  • Title: Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew: Defining, Measuring, and Understanding Autistic Burnout
    www.liebertpub.com/doi/full/1...
    Autistic burnout is an urgent issue within the adult autistic community, attributed by many as the cause of negative outcomes including loss of health, work, independent living, and quality of life. Dr. Raymaker will discuss recent research by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) to define and measure autistic burnout, and to understand its attributions and impacts. They will also present strategies autistic adults have found useful in preventing or relieving their burnout.
    We are funded in part by the New Jersey Governor’s Council for the Medical Research and Treatments of Autism and by the NJ DOH

ความคิดเห็น • 100

  • @Celestein
    @Celestein ปีที่แล้ว +81

    I wish there was an organization which would support and aid autistic people becoming actual autism academics and researchers. I am a firm believer that we must care for our own and not depend on people who don't share our experiences and problems. It is crazy that autistic people still have to turn to studies and literature devised by neurotypical 'experts' who are looking in from the outside and are biased by their own perceptions, priorities and misinterpretations. Autistic people are often highly intelligent and dedicated, we are the very best possible experts.

    • @Meritouschannels
      @Meritouschannels ปีที่แล้ว +11

      I agree - I experienced autistic burnout my second year of lawschool and had to drop out - the problem was, I was 34 and had not been diagnosed yet and had not considered being on the spectrum until I entered my 40s. (I was also raising four children - coparenting),

    • @the11382
      @the11382 ปีที่แล้ว +11

      Everyone has biases, even us autistic people. We need a combination of both to do good science.

    • @sarahsovereign4522
      @sarahsovereign4522 ปีที่แล้ว +5

      Formal mentorship programs? Like the "Big Brothers/Big Sisters" program in which volunteers get coaching to communicate, facilitate and become good role models, perhaps "Spectral Siblings".

    • @blondequijote
      @blondequijote ปีที่แล้ว

      That’s ur naïveté The commercialized science of psychiatry will jsut start dispensing autism diagnoses to those who want it for admission to prestigious programs. I’ve never been diagnosed, but have you guys tried following the money? The whole education system is destroyed by it and the way they bump up imaginary numbers to get ppl taking out ridiculous loans. It’s unsustainable. The solution is let the normies have their nonmagic world without us in their system. It’s better for both groups.

    • @xoshelbz
      @xoshelbz 11 หลายเดือนก่อน +2

      @@sarahsovereign4522I’ve been wanting to do this so badly but I didn’t know where to find those organizations! Autistic kids need autistic adult role models/friends, especially if they have neurotypical parents, because they may not feel like anyone in the world understands them!

  • @viktoriar1762
    @viktoriar1762 ปีที่แล้ว +39

    Another aspect of this might be that a lifetime of masking can lead to an eventual inability to mask as well and/or for the same duration as once was possible. It is as though after so many decades, the cumulative burnout results in our true selves winning the battle. I also want to add that the loss of skills hit home for me. When I was working so hard to mask and deal with sensory issues, my artistic talent seemed to dissappear. Now that I don't spend so much of myself on working so hard to mask my true self, my artistic talent has flourished.

  • @user-dm6jy5jr9o
    @user-dm6jy5jr9o ปีที่แล้ว +64

    As an autistic woman diagnosed this year at age 39, I went through multiple phases of autistic burnout leading to a state of what seemed to be chronic illness. Tested for every autoimmune disease under the sun, spent thousands of dollars on doctors. All the tests continually coming back “normal.” I had many caring doctors who took me seriously (as well as many who dismissed me as a hysterical woman who was hormonal or mentally ill), but a screening for autism was never considered, let alone administered. I couldn’t help feeling angry when I first learned about autism in women and autistic burnout. I have spent decades feeling broken, sick, weak, seeking help from medical professionals and finding now answers. I just wish this knowledge would filter through to the PCPs. They are the first point of contact for many of us who have slipped through the cracks, and they want to help, but there is a veil over this concept.

    • @michaelmcteer6131
      @michaelmcteer6131 ปีที่แล้ว +16

      I’m a 43 y/o male who’s experience mirrors yours. I understand. Thank you for commenting.

    • @sioxz8435
      @sioxz8435 11 หลายเดือนก่อน +3

      thanks for your good explanation. my mom was like this and i felt that i was doing the same but i'm very proud and feel alot of shame when i ask for help. but i asked for a autism diagnosis as 25 years old now 2 years later as 27 i got my diagnosis

    • @Krista-388
      @Krista-388 24 วันที่ผ่านมา

      me too

  • @mandaloolux9216
    @mandaloolux9216 ปีที่แล้ว +16

    Autistic burnout is REAL. I'm so grateful for youtube otherwise I would have gone the rest of my whole life feeling like an alien, feeling as if no one will understand me.

    • @cross-eyedmary6619
      @cross-eyedmary6619 ปีที่แล้ว

      How does knowing you’re autistic help. Unless you can afford the diagnosis no one is going to know, and even if they know they aren’t going to care. Already too exhausted for life and I’m only 40

  • @thelondoners-lifeisart
    @thelondoners-lifeisart 2 ปีที่แล้ว +51

    In my experience a lack of systems within my mind as well as in my reality caused my burnout. When information and expectation overload our inadequate framework of understanding and ability logic is irreconcilable. It’s not perfectionism it’s an inability to prioritize as everything is equally important because so much is wrong with the systems we’re living within.

    • @normantouchet4185
      @normantouchet4185 ปีที่แล้ว +2

      A mouth full 😋, but you got it right. 👍

    • @FreakyBr0
      @FreakyBr0 ปีที่แล้ว +2

      That is the best explanation I've heard of what I feel yet. Thank you.

    • @christina6881
      @christina6881 ปีที่แล้ว +3

      Here, here!!!!! I am a woman who thinks she is Autistic and I experience almost everything that lots of other people with Autism do. I feel exactly this burnout every day after work, for example. I’ve also been diagnosed with Depression, Obsessive-Compulsive Personality Disorder, & ADHD over the years but never Autism. One psychiatrist I went to one time even went into a sort of admonishing frenzy on me after I asked him if he thought there may be a possibility that I’m Autistic, saying that I couldn’t POSSIBLY be as I can make eye contact with others. Really? Please tell me that is not one of the only criteria upon which you use to rule out Autism, Doctor. It’s a shame b/c I feel that every professional I’ve ever seen concerning my mental health has missed the mark with me and has diagnosed me with all of those other disorders because not doing so would upset the apple cart of their biased, conventional models that were used to teach them Psychiatry. Hey, I’m the opposite of male, and I’m the opposite of a child. I’m now 48 years old, but have been struggling my whole life with trying to cover up so many of the symptoms that Autistic people also seem to have. I also struggle TREMENDOUSLY to get anything else accomplished in my life following my work day in relation to all other “normal” people I know. After what I have researched as it would relate to me, I now believe I am Autistic, very much experience this Autistic Burnout, and that all of my previous diagnoses (while not entirely incorrect) may simply be cause and effect type of disorders or are Autistic co-morbidities. I desperately need a medical professional who has the most comprehensive, progressive, and up-to-date command-of-knowledge of Autism to definitively diagnose me with Autism or not.

  • @galespressos
    @galespressos ปีที่แล้ว +23

    It is all true. Wondering why on a physical level it happens. The triggers are very relatable. It’s dangerous becoming non-functional in many areas or too slow to do what is needed, and could seriously end up dead, either by accidental suicide or ending up outside without sufficient work or not able to get organize help and freeze or end up malnourished. Gaslighting is real, stupid, and asinine.

  • @beckacheckaenterprises7294
    @beckacheckaenterprises7294 2 ปีที่แล้ว +23

    WE NEEEEED to CHANGE the name of “Autistic Burnout” as non autistic people think it’s just typical burnout and it’s SOOO annoying 🙄😖

    • @PJay-wy5fx
      @PJay-wy5fx 2 ปีที่แล้ว +1

      Yup, NT’s just hear what they want to hear and then come up with unsolicited advice on how to navigate autistic burnout, suggesting the same things that are being suggested to NT’s who have been working a bit too hard for a bit too long, but with otherwise privileged and uneventful lives. Soooo frustrating!!!!

    • @buttercxpdraws8101
      @buttercxpdraws8101 ปีที่แล้ว +5

      This is true !

    • @raven4090
      @raven4090 ปีที่แล้ว +5

      You're so right!

    • @MissingScaffolding
      @MissingScaffolding 5 หลายเดือนก่อน +1

      They call it regression in kids. 🤷‍♀️

  • @isotope73
    @isotope73 ปีที่แล้ว +5

    I wish there were a system of other ASD folks who were local that could help with cooking, shopping, etc because we "get it". When I'm NOT in burnout I'd love to help others.
    Can we make an app? Like ubereats? To help connect people locally.
    Because waiting for politicians to do anything... we're going to literally lose autistic people to more suicide waiting around for that!

  • @carrerahorse
    @carrerahorse ปีที่แล้ว +22

    my 24 yr old son is in the of applying for disability services. too high functioning seems to be the problem. all of this resonates with my son's experiences and I believe he has experienced burnout during several times in his life

    • @shasita3361
      @shasita3361 ปีที่แล้ว

      Sound familiar. 32 yo, female with high functioning autism here. Can't get any help with finances and work right now, because I can still work. Even though it's less hours, and adjusted work. But my employer may let me go in March, if I still can't work full hours and perform all tasks.
      The disability is severe enough for me to be very limited in my functioning, and tired all the time. But it's not bad enough to really get help...
      Good luck getting your son help. I hope your luck with that is better than mine.

    • @blondequijote
      @blondequijote ปีที่แล้ว +1

      Too big functioning means he’s one of the nerds whose homework they copy. Normies need us more than we need them. Show them by stepping away from it all

  • @sherrym5556
    @sherrym5556 ปีที่แล้ว +15

    Recently diagnosed myself at 58, misdiagnosed from many
    " professionals " through my life. The biggest thing for me is the absolute lack of recognizing this especially in woman, and having to do my own research. Plus societies lack of knowledge and utter abuse in many areas of my life. Left with cptsd, adhd, sometimes suicidal thoughts, especially being alone with no help, family or friends that never understand or care to. I've been trying to survive because of my dogs, that's all. Plus in poverty because I can't hold a job. Thank you for these vids, gives me a little hope and knowledge.

    • @daveansell6212
      @daveansell6212 ปีที่แล้ว +3

      Get diagnosed, get support, find interests. Find a way through - don't give up. Support groups out there. 👍

    • @sherrym5556
      @sherrym5556 7 หลายเดือนก่อน +2

      @@daveansell6212 Interests are not my problem. Doing the job of 40 people because I don't have help, am alone and trying to hold it together the last few years on top of mental illness getting worse. But thanks. Oh and the gaslighting from my Dr n everyone else when for several years I have tried telling them I HAVE ADHD and now realize its been autism..makes it worse.

    • @anonymousprivate6814
      @anonymousprivate6814 4 หลายเดือนก่อน

      Your experiences mirror mine. I am late diagnosed autistic, which happened at 38, after suicide attempt at 21 due to burnout and got misdiagnosed with many mental health conditions. I am 50 this year and hit another burnout 15 years ago and it changed me in terms of loss of skills. I have weekly support with practical things. I too am definately experiencing CPTSD and regular suicidal thoughts and not worked for 15 years but volunteer 2 hrs a week when I can. Videos like this are my only hope. Emotional dysregulation/executive functioning are issues for me. I love birds and wildlife and walking and try to eat healthy. Am not rich either. Hope and knowledge really helps me. I am in UK. I wish you well and everybody here.

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว +4

    My Mom did good till I was around 16, in for some reason, she got stuck, in all she could do was sit for over 40 year's, I understand today what happened to her, uncles same, back then, if you see me face to face you might think I'm normal, but spending a little time with me , I can't hide it as good as when I was younger , even the new kids born in my family or showing same sines, yes good help is a blessing, all of us don't have this help.sad

  • @meechipeachi
    @meechipeachi 8 หลายเดือนก่อน +3

    Born in 1972, and have had quite a bit of trouble managing living in NT world for last many years. No formal diagnosis, But I recently came across the term autistic. Burn out and wanted to educate myself about what it was.
    I am both comforted and terrified. That that is probably what's going on in my life The last few years for sure.

  • @donnyrosart8714
    @donnyrosart8714 3 ปีที่แล้ว +17

    High levels of masking would probably correlate with being out in public, being with people not in your inner circle, etc. That's a stressor that non-masking people would be subject to as well.

  • @sarahsovereign4522
    @sarahsovereign4522 ปีที่แล้ว +14

    Re: @53:00-56:00, self-determination, thank you for putting words to this! It's not a matter of a twenty-something learning to do "adulting", it's not a deep depression that precludes all action, or primadonna "I can't do that" behavior. 30 years ago I saw it in one of my professors. Brilliant human on so many levels. But it was worth it for him to use the proto-internet (that he probably helped to build) to special order Velcro shoes because maintaining and adjusting tied laces pulled a disproportionate amount of his own bandwidth. That energy was better spent in other ways, and I'm glad he did!

  • @jenniferferris44
    @jenniferferris44 ปีที่แล้ว +4

    Idk if I'm experiencing burnout or severe CPTSD or both. Ive been masking all my life while fighting to suppress trauma. I'm barely able to stim to release anymore nothing I did or masked even work anymore. I've always felt like I've been operating on overload but now it's like stuff is frying, newest thing is painful to vocalize words

  • @susanbeever5708
    @susanbeever5708 2 ปีที่แล้ว +16

    Yes, an autism peer support group, with professional help like the kids get.

    • @blondequijote
      @blondequijote ปีที่แล้ว +1

      Back in my day I got sent to n autism support group where we all lacked the self awareness to know it. It’s called AA and it’s where artists who try social drinking and fail inevitably get stuck if they decide to go dry.

  • @gregzeng
    @gregzeng ปีที่แล้ว +4

    This video lecture is extremely accurate on these effects of burnout, masking and term damage, affecting everything and everyone who is not accepted by the current mainstream culture.
    Disadvantaged minorities were once left handers, slow learners, "wrong" religions, and"wrong" affiliations of most types.
    The current DSM 5 and current ICD 11 will soon be shown to be wrong and "evil" on the latest versions of these legal standards. Our outstanding of autism spectrum disorders (ASD) will also evolve and change.
    My father and myself both show ASD from both Traumatic Brain Injury (TBI) and complex PTSD. The causes and effects of our two DSM and ICD damages are very different on both father and son. When the next version of ASD might become the current "authority", ASD might understand that not only babies show ASD. ASD can be biochemically acquired on adult life by ordinarily healthy adults.
    The burnout etc on this TH-cam video will also supply to all ASD, whatever three cause of the ASD.

  • @rebeckajarl3934
    @rebeckajarl3934 ปีที่แล้ว +7

    This! I’m dealing with the tail end hopefully of autistic burnout. The fact that it is my fifth so far are the major reasons for me advocating for getting my ASD diagnosis, because if not this will probably be my life every 2-5 years. And I don’t know how many more I will survive even though I have a great support system in my family and friends. I’m about to start the process of getting my office diagnosis. On the topic of skills in the kitchen. When I’m not in a burnout I can cook even somewhat skilled in some areas. When I’m in a burnout, I almost need to be force fed to be able to eat. I can barely manage to go to the bathroom, in that state even if I normally could cook every dish in the world it wouldn’t help. I have a dishwasher and the only way I could have some thing to eat on was to use paper plates because even just using the dishwasher was to completed. When I’m not in a burnout, I can handle academic studies at a university level. In a burnout speaking full words much less sentences are to complicated. I really, really hope that you have managed to get further with the studies past covid. Thanks for the work you do! Autistic burnout is something you survive, and the thing you so far have put as possible help/ solution resonates with my experience.

    • @blondequijote
      @blondequijote ปีที่แล้ว

      Don’t get diagnosed if you relate, Greg, but don’t give a dime to the commercialized science of psychiatry. Find a community of autistic individuals

    • @rebeckajarl3934
      @rebeckajarl3934 ปีที่แล้ว +2

      I live in Sweden the system and process differs a lot from in the states still we have a lot of issues here as well.
      It is not so much economic but to be able to put good enough explanations of your autism in writing in the correct format so that it passes through the screening to get a first physical meeting.
      I need the official papers in order to be able to get the support I need to be able to get back to my job. I'm currently on doctor ordinated sick leave (covered by the Swedish public health insurance system) and will be until I have recovered enough to get my normal functioning back again.
      I'm extremely privileged in having a job and a boss that wants me back when I'm healthy enough to be able to do my job and to living in a country that if you manage to get a doctor that understands burnout and mental health issues and the insurance system doesn't complain then you can actually get sick leave until you are healthy again.
      The medical insurance system in Sweden are an government institution so it is supposed to support every citizen. They still find ways to screw over a big part of the population especially when it comes to psychiatric needs. The screening system are so extreme because the system has room for less than a third of the people needing emergency life saving psychiatric help. It took me about a year to manage to with help of a general health psychologist write a full enough referral to pass through the screening and get a physical meeting.
      One can pass by that if one goes through the privet system. I was directed there once when I was fighting for my dyslexia diagnosis. The difference for that was healthcare that was covered fully or almost fully by the general public health system or for me then about a whole month income. So less of an option if one like me then on the minimum wage side of the income scale.
      So I'm extremely privileged in that my insurance cover both my assessment and my recovery time needed to fully heal from this burnout.
      And due to an either incompetent or a prejudges doctor I almost lost my job and did lose two months income so I definitely feel the privilege of the Swedish healthcare system.

  • @briancummings3457
    @briancummings3457 2 ปีที่แล้ว +18

    I watched a presentation of Dr. Raymaker's on this same subject and somebody asked her about a correlation to depersonalization and ASD and it went off like a bell in my head. Can you mask so long that in order to keep masking you have to remove yourself from yourself, like another layer/dimension of isolation/seperation when the physical means of care dont seem to be available or known of.

    • @brainchildren7140
      @brainchildren7140 ปีที่แล้ว +6

      Recently diagnosed as autistic at age 28 and suddenly my life-long issues with depersonalization are starting to make sense. The feeling is definitely triggered by stress and I was always told I just have an anxiety disorder and it’s a common symptom. But I never noticed how closely related it was to sensory issues as well. It wasn’t until I started having severe migraines that I had an EEG done which revealed abnormal electrical activity in my brain. Was diagnosed w epilepsy and told the depersonalization/derealization (can never tell which I’m actually experiencing) could very well be a type of mild seizure. Shortly after was diagnosed w autism. Could this all be related to “autistic burnout”? I’m starting to make so many connections I can’t believe no one made before…

    • @rosewild7142
      @rosewild7142 ปีที่แล้ว +2

      @@brainchildren7140 I’ve been in a similar vein for some time now in regards to autism,epilepsy, migraine, disassociation/derealization/depersonalization plus vasovagal stuff. Can I ask do you experience aura migraines? Or migraine in close proximity to these “mild seizures” also? Thanks in advance if you choose to reply and thank you for sharing your thoughts here now, it’s so very helpful (and validating!🌈)

    • @brainchildren7140
      @brainchildren7140 ปีที่แล้ว

      @@rosewild7142 hello, yes I do experience migraine auras, although my neurologist believes this might be the “seizure” bc my symptoms did not go away w any migraine medication. the only thing that helped ease them was anticonvulsants. the “episodes” as I’ll call them did not completely go away w the meds, but they helped cut back on the frequency of them significantly. Also found that avoiding certain triggers helps too (bright lights, driving, generally overwhelming/loud environments), hence why I’m wondering if it could be related to my autism-related sensory issues.
      also side note, my bf who is also autistic and does not have epilepsy has vasovagal syncope. I think there might be a correlation there as well
      i’m sorry you are experiencing these things as well and hope things get better for you soon!

    • @isotope73
      @isotope73 ปีที่แล้ว +2

      Removing yourself from yourself, I would say is dissociation. A survival mechanism.

  • @joycebrewer4150
    @joycebrewer4150 2 ปีที่แล้ว +11

    Being unaware I am on the spectrum until just the last few years, and from a lower income family whose resources to send children through college ( including scholarships, work-study programs, loans) were barely adequate for my older siblings, the whole prospect of going off to college was too overwhelming and scary for me. I also dreaded choosing a major, since I believed I would not have a second chance if I flunked or hated it once I got into it. The social part of highschool was almost too much for me, even in what was after all a small town school. I had no confidence I could manage any more. My grades would not qualify me for scholarships,

  • @catherinejames2734
    @catherinejames2734 ปีที่แล้ว +10

    I am currently experiencing what I think must be burnout. I am fairly high functioning, usually hyperactive, though it seems that when I really got to a point that I just can’t keep masking any longer, I also began to physically and mentally collapse. This has been constantly happening to me on a regular basis now. It’s been suggested that I’m suffering from migraines which is something I’ve never really experienced as I always said in my past that I rarely ever experience headaches. I’ve been so confused as to what is happening to me it’s also caused me much greater anxiety issues to the point I don’t want to socialise. I have found that when I stay home more and by myself I feel much better. This has also led to me feeling like I just fail at life as it’s all become too hard. I’m constantly trying to make sense of a world that is so dysfunctional and strange. I just want to work out how to know when it’s upon me again to try and prevent how bad I feel when all of a sudden I can barely move or function. When I recover I’m so relieved I madly try and achieve so much to catch up on the time wasted whilst feeling like a vegetable. At this stage I feel that the only way is to lower my expectations and slow my whole world down so that I feel I’m coping. I distance myself from people more so no one will notice. I’m an artist so I create and tell people I have to spend lots of time alone to develop compositions. I’m beginning to feel that I’m not suffering from migraines at all, rather severe burnout issues.

    • @ninaromm5491
      @ninaromm5491 ปีที่แล้ว +3

      @ Catherine James . Hi - I totally relate. An also an artist, and also sell more abs more deeply into non-function. I send condolences - it is such a loss... If ever you feel like talking around these issues, I am available.
      Best regards, and wishing you strength in your personal journey. N

    • @catherinejames2734
      @catherinejames2734 ปีที่แล้ว +3

      @@ninaromm5491 that's really nice. Thankyou Nina. I've been constantly researching what I can to understand it more. It's not like having a health issue that others can comprehend. My executive functioning isn't great when I'm like this, though I'm finding if I can focus on creative projects I start to feel happier at least. Being able to discuss it and share would be extremely helpful. I'm in Western Australia. Where are you from?

    • @ninaromm5491
      @ninaromm5491 ปีที่แล้ว

      @@catherinejames2734 I'm in South Africa. Not sure how we would contact... Do you have an email address ? That would be a starter, perhaps... N

    • @josephinejeffery
      @josephinejeffery ปีที่แล้ว +2

      Hey 👋 your description fits my experience exactly, I have an endless cycle of boom and busy especially if I try to work what would be considered consistently as a neurotypical would. Also an artist 👩‍🎨

    • @josephinejeffery
      @josephinejeffery ปีที่แล้ว +2

      *boom or bust

  • @JamieHumeCreative
    @JamieHumeCreative 9 หลายเดือนก่อน

    Great point regarding research that shares this characteristic other ingredients with the Autistic community. The intersectionality regarding this is also worth looking at.

  • @krisannpino2439
    @krisannpino2439 2 ปีที่แล้ว +3

    Very well done. Thank you so much for doing this study. I got married in May and due to increased demands on my home life, I’ve been in autistic burnout for several months. I recently reduced my work hours and have found it very helpful. I’m starting to recover some of my energy and executive functioning. I’m thankful my boss was accommodating.

  • @shorelined1
    @shorelined1 ปีที่แล้ว +3

    I always got sent to an endocrinologists due to high cortisol. Calling it burn out is just another way to say chronic debilitating stress. Obviously it's going to take it's toll, always camouflaging what comes naturally to one. It's heartbreaking. I'd be elated to have funds to use only on a pa in my presence. Helping me shop quicker, clean better and faster...sounds great. This was rather repetitive and tedious but got some good tidbits.

  • @patsygarcia7563
    @patsygarcia7563 2 ปีที่แล้ว +5

    Thank you so much I will share all your work w my son Patrick 26 with Autism. This is Soo helpful Awareness thanks from Mom

  • @brianford78
    @brianford78 ปีที่แล้ว +2

    my burnout is maybe low-level long-term, but it is more pronounced in a certain day - so it's burnout within the day - frequent + acute, as well as chronic and ever-present

  • @jennifer9047
    @jennifer9047 2 ปีที่แล้ว +6

    47:00 Well, shit. I'm an autistic healthcare provider. Currently suffering through a three-year burnout.😟 If you need anyone else for your study, I'd love to participate!

  • @juliewilliams489
    @juliewilliams489 ปีที่แล้ว +2

    I'm not diagnosed with autism but so much of it fits my life. I am diagnosed with specific learning disability, autoimmune disease and mental health.
    Not sure if you've worked it out yet but your results for masking not showing what you expected. Here are my thoughts.
    1 There are many benefits to fitting in to society that may even outway masking if sustainable and efective. Such as income from good job and it's rewards. Aswell as being able to pay for services needed etc. As well as all the normal benefits. But would need to know where and what's needed to employ them. Which also makes me wonder about the efect of family and significant others in the background. Or the nature of the skills of the individual afected by autism. In regard to suport either in this case supporting and finding and instigating the administration needed. Or less likely for this scenario belittling and not helping such as your lasy you'll never amount to anything, you have to be able to do the basics before you can try the higher functioning things etc.
    2. If not sustainable but was highly efective in the person's social context there would be a multiple efect of burnout when no longar possible. Because they lose both there daily functioning and the benefits of social connectivity. Depending on there personal suport at home would efect the outcome, speed of burnout and ability to achieve and recover from this.
    3 If not sustainable or efective in there social context it wouldn't show much change. In fact may be benificial once these draining activities have stoped and life has adjusted around them. This group may be better off without there personal significant others if not supportive. But the range of suport in any of the scenarios could increase the variability you found.
    Also my thoughts around medical masking is that it's different. It's work related that can affect others parts of there lives. For autism masking is required in all facets of life and work can have many benefits even self esteem building and relive some of the masking needed in every day life.also it's life long so where is the baseline control for before and after the masking activities for an individual. To me there would be a more significant efect of before and after for the medical profession as opposed to the masking itself because it's a constant for people with autism.
    Burnout may also be more long-term fatuge of bodily systems rather than acute ptsd trauma and exhaustion. Not that I recommend it but it would be easier to test the impact of different masking types on cohorts that already mask but this is getting way outside my knowledge area.
    Just my thoughts.

    • @Sapiditious
      @Sapiditious ปีที่แล้ว

      Great food for thought!

  • @Hello-zf5lq
    @Hello-zf5lq 3 ปีที่แล้ว +4

    Wow, great job doing a qualitative research study and explaining it in plain language!!

  • @sarahjane6749
    @sarahjane6749 2 ปีที่แล้ว

    Thank you so much for this. It was extremely helpful.

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว +2

    I have two sisters, in when I look back , me n my youngest sister was by our real Dad , cause put our oldest sister on a pedal, n said me n my youngest sister, was not his , our problems didn't come from him, to make it short ,I feel kids raised with parents that or loving n understanding, seems to do better in life, it's seems to me, a kid like myself, I was born with troubles my mom could not handle, so my uncle n Grandma raised me , uncles where same , but didn't know it, so they were drunks, in a bad way. N best person you could ever meet when sober, I've had a awaken a few weeks back, it removed a lot of bad past, I didn't learn in school like others, I learned more by seeing, hearing, trying,

  • @togetherwithautistbaby
    @togetherwithautistbaby ปีที่แล้ว +2

    Thank you for sharing. I am autism son parent , I wish I could get information help from experts/ parents and create friendships

  • @galespressos
    @galespressos ปีที่แล้ว +4

    Ironically the tasks are something that could have been done but not in the way that people push it on somebody else’s schedule which doesn’t take into account other matters being juggled at the same tits like trying to carry many things where the people asking us to carry don’t know what else is being carried and insist we carry now at a certain way making it not possible so that all gets drops whereas if we had not been pressed upon to carry all at once, it could easily have been done. It is possible to carry with several trips and a break but if we are seen taking a break or not seen carrying what requested because we are carrying something else, the load is dropped on top of what we already have and we collapse. Shame on people for wasting each other needlessly and wasting the value of the other because some people have to insist on a certain way, and then value is lost.

    • @cross-eyedmary6619
      @cross-eyedmary6619 ปีที่แล้ว +1

      Yes I could manage if I could be left alone to do my way

  • @michaelmcteer6131
    @michaelmcteer6131 ปีที่แล้ว

    Thank you for your work and reporting. You are on target.

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว +2

    Amen 🙏, you're very right, is there anyone or place where I can get help telling my hole life , to make a book of how I was raised, in what it's like to have this Artistic ,unhelpful from a child to the years of 58 in a world that I felt was not my world, can you recommend me in this direction???

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว +1

    Yes indeed

  • @fellowcitizen
    @fellowcitizen ปีที่แล้ว

    Excellent research and discussion

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว +1

    I'm looking for help to see what I can really do, in many subjects. It comes naturally, it seems strange, like I can watch a new movie I've never seen, I can watch a few minutes n tell you what will happen next , my wife doesn't know how I do this, I see ahead easily. Meltdowns is what happen to my mom, she never came out of it.

  • @midnightmule2626
    @midnightmule2626 3 ปีที่แล้ว

    interesting listen, thanks :)

  • @ouisieemail4082
    @ouisieemail4082 ปีที่แล้ว

    Where can I find the Aaron Bullis / Abby Sisterka quote about capacity building? Thank you.

  • @ryansuttree8054
    @ryansuttree8054 3 ปีที่แล้ว

    What is the job description you used for this person you hired to help you? A PA?

  • @tomcontini9641
    @tomcontini9641 ปีที่แล้ว +1

    8:02 to skip intro

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว

    It's like someone has pulled the string of like from me, lost of skills is same, can't handle a ticking clock , how people talk to me I different manners, same.

  • @lisaleo729
    @lisaleo729 ปีที่แล้ว

    Who can I contact in the DC, MD, or VA if I know an adult who experiencing this?

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว

    I have a picture window in my head , with a very wide view, of how I look at everything that I don't know, I haft to look it up , in what I fine , when I add it to what a already know, then I can say or do most likely more than the normal people.

    • @normantouchet4185
      @normantouchet4185 ปีที่แล้ว

      Been n crazy hospital, rehab, jail, prison, beat by teacher ,other kids, uncles or older kids , today im not the only one, my sister n my kids or same ,

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว

    I going through this now,finding ways to get out of this ,im doing some better, I have server Anxiety, ADHD, SLEEP Disorder, sounds, light, im working to see how to fine the me I lost sa a kid, it not so easy, but today I'm not giving up.

  • @darkelwin02
    @darkelwin02 2 ปีที่แล้ว

    Still not sure if I suffer from this or not

    • @mv1362
      @mv1362 ปีที่แล้ว +2

      You would know

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว

    I have to process everything I do,in my head,where others can use what school was not a problem for them, I have a 4 grade education, it's getting harder cause I'm going bline, in there nothing wrong with my eyes health,to be fixed,had one uncle who was the same.

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว +1

    Have a big problem with doctors, for all the years being diagnosed with things I didn't have, n all the pills that I had to take, it's a wonder I'm hear to share my life a little bit at a time, I want to see how people take it, if I can pull down all this mask,it's so much masking from a little kid till resent. Pray for me,

  • @normantouchet4185
    @normantouchet4185 ปีที่แล้ว +1

    I don't learn like normal people, I'm 58 years old, I have a fascinating mine.

  • @jjj-lb7ox
    @jjj-lb7ox ปีที่แล้ว

    Hi i think im on the spectrum nd found out that kabbalah relay helped me be more mindful
    duz any one know if there has been a study on this subject ?

  • @Laneline5000
    @Laneline5000 ปีที่แล้ว

    Love doing burnouts!! I am also Autistic!

  • @NinorahDeux
    @NinorahDeux ปีที่แล้ว +1

    If you suffered from childhood trauma, and/or are addicted sugar, i advice you to have a look to mitochondrial dysfuntion, to Jessie's Inchauspé's book and to NADH and NMN. You may be able to get rid of this fatigue.