What is it like to have autism / be autistic?
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- Опубліковано 1 кві 2022
- Happy World Autism Awareness/Acceptance Day! Today, I want to share with you, the best I can, what it's like for me being autistic or having autism. Everyone's experience is different and this is a pretty non-traditional way of answering.
#WAAW22 #WorldAutismAcceptanceDay #WorldAutismAwarenessDay
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Thank you for sharing these Stephanie. I feel a lot of these too.
“Struggling between being a ghost and a spectacle.”
I identify with this. Except for me, a cold still winter's night is the best time for me to stim by just standing out in the cold, and enjoying it.
As long as there is no wind 💨 😂
I can relate to so many of these. I almost cried. Nobody has ever asked me what it's like to be autistic or be me. I would say I constantly feel like I have to force myself to fit a mold, so I can become a version of me people can tolerate. Meanwhile, neurotypical people can be who they are and expect to be accepted for who they are, and they will tolerate horrible treatment from each other, but I have one awkward conversation and I am shunned. To live with a lack of understanding why it's that way, but knowing it's wrong is kind of defeating.
"Being misunderstood...CONSTANTLY". This resonated with me.
Yes
One does not understand one is different until the abuse starts from others. I became very depressed. I think it is important for people to understand how many are NOT supported, understanding is not everywhere.
A lot of us are not supported by our former classmates or even friends we made in person or online. So not everyone knows about who we are and we get abused for it
@@RomeoChessGameVlogs200 Yes, I understand. Now I am older I have become quite antisocial because in the regional area I live there are no support groups.
Yes😊😊😊
Bullying and harassment at my current job is what led me to discover I was autistic at the age of 35.
I can relate to a lot of these. Especially rejection sensitivity, social anxiety, and being misunderstood! Also having strong unpopular opinions, and constantly going against the current instead of with it, which is exhausting! I really wish there was more support out there for people like us!
For me I get a lot of rejection and being misunderstood and a lot of people can’t put up with me because I have autism as well and it’s really hard for me to make friends so yeah that’s why people like me need lots of support
I find all the autism support groups are all for the idea that being autistic is a gift and if you disagree they get mad. It isn't inclusive if you don't think like they do.
Indeed😊
"Losing friends with little to no explanation and having to deal with the pain alone" hit me like a sledge hammer bcs I didn't expect you to say it in regards to autism. Had to pull it back and listen 1 more time. That's what I'm going through and have like 3 times. Wow I never thought to possibly connect that to autism 😮💨😞
"between being a ghost and a spectacle" THIS
I find videos like this so helpful in understanding my own experience, and definitely relate to some of these points that you mentioned. Specifically the "being great on paper and a let down in person" and "annoying people, realizing it, and not being able to stop." I'm so much more eloquent on paper but when you add other people into the mix I just get stuck buffering a lot of the time. Additionally, regarding the "annoying bit" I was recently catching up with an old acquaintance and other people were trying to get her attention (I noticed this and internally was like "omg stop talking and leave...LEAVE, abort mission") but she had to politely signal an end to the conversation before I could break off. :/ Sometimes it do be like that.
I recently learned that I'm autistic. So much of what you share is similar to my experiences and that makes me feel better like I do have things in common with other people out there somewhere. Thankyou
"Learning that people don't tell me the truth... because I don't get it..." This is what I am struggling with right now. I bounce between believing that all people are good and trusting everyone and everything... and believing that everyone is lying to me. There is never an in between. I don't understand the point of lying.
I don't trust anyone and tend to assume everyone is bad/dishonest or guilty until proven innocent and even then it's not 100%
When I was a child I was punished for telling the truth, I was physically and emotionally abused. I often still told the truth anyway but over time I realized life was easier when I lied. I still lie/sneak around when I need to. It is only to avoid crap from others who don't feel or think the same way as me and basically I don't want to argue or even hear what they have to say, often because I already know what the other person is going to say. I have ESP.
Spot freaking on!!!!
Thank you for this message.
Thank you, Stephanie, for sharing so well!!
Great video Stephanie!!
Thank you, Stephanie, for this video. And for being so open and vulnerable.
thanks for making content i can share to my loved ones to help understand me better.. i relate a lot. thanks stephanie.
So well described. Thank you.
You are a great person Stéphanie. You are helping so much with this channel. Thank you 😊❤
This is so unbelievably helpful for me. Thank you for this
Good Video and good message as well.
You are wonderful and brave in putting yourself out there. Just a few minutes ago my fellow heard our cat meowing and I didn't. So definitely the acute sense of hearing is there with him.
Hi Steph thanks for sharing. Its a lot like this for me too, somethings not to much and others a lot. Explaining what l think and feel and need seems to be an impossibly for me, so getting the help l need never seems to happen.
Stephanie you are so brave and candid about addressing your issues. I have so much admiration for you.
Stephanie, you are one of the most self aware people I've ever encountered. It's extraordinary.
Thanks for sharing your experiences, I resonate with a lot of what you said. ❤
Yeah same here but my mind is a lot more complex and it’s gotten me some friends
Hey I'm Rachel and I'm autistic to and I relate to a lot of what you said in this video. It's nice to meet somebody that I can relate to that understands what I'm going through. I was diagnosed with autism when I was a child so I dealt with it my whole life. A lot of people did not understand me or want to be my friend because they thought I was weird. It was just really nice to see your video and hear you talk about your experience.
Not out of step...just marching to a different drummer. Be Well Stephanie.
This might actually the best video regarding autism. You listed so many symptoms based on personal experiences and it makes it feel so genuine and more educational. Instead of just reading a website page it's better to just talk about yourself.
I might have to go back through this a few times to cross off the maybe three or four things I didn’t do just TODAY!
Thank you. I am the father of a soon to be 5 year old and your videos helpful and informative
3:00 I'm worried this could come across as bragging, but I'd claim this as a kid when people called me "smart". I genuinely don't think I'm smarter than anyone else, I just constantly notice things and store them away for recall when/if they suddenly become important (most of time it's not). I was also trying to comfort my classmates by saying this when they felt bad about their grades, but I don't think it worked😓
also, yes to using your heels to rock back and forth, a superb motion👌🏾
I just found out she’s an lgbtphobic Bible thumper wtf 😭 I checked cause this video felt a bit conservative with the way she spoke abt holding "unpopular" beliefs. I’m used to picking up red flags for reactionary beliefs. This sucks, I wish I was wrong. She's got some major cognitive dissonance. 💀
@@waterwraith1189 not sure how your reply is connected to my original comment... but I would need more context. she is a christian but I haven't come across any anti-lgbt content here yet (and I'm a bi atheist lol)
@@waterwraith1189 I find it a bit troubling when people go on the attack when others do not align 100% to their beliefs. I have yet to hear Stephanie press any material or content on here that does not fall under the topic of Autism. Everyone does not have to tow the line. I am Autistic, I am in my 70's, I am Asexual, at times I can identify with the Gay community. Yet I do not subscribe to the overly obsessive and extremist views many in the Gay Community take. They always seem more on the attack and do little to show the acceptance they proclaim. On Stephanie's channel, most are here because of Autism or desire to learn more on the subject. Autistic people have just as wide of varying belief's as Nuerotypicals. It would be wrong to push away people because they have other beliefs in other areas. I am sure there are many things people disagree on with or about me, and likewise much that I would disagree with them. But I do not let other areas of disagreement get in the way of personal growth. I do not agree with your sudden dismissal of Stephanie's content based only on your assumptions.
I would advise you to stop and ponder. You are ready to slam Stephanie for being against Homosexuality (YOUR assumption) and painting her as close minded. Yet I would expect you would not be happy with the people who are close minded about people on the spectrum and consider us "retarded". I believe if ANY group of people want to be accepted, they have to DEMONSTRATE acceptance. There are many gay and straight people who have a blind bias to my Asexuality, not knowing it is directly related to my Autism. Yet, I am not deterred because I accept people for who they are, not what I want them to be.
You come here to understand more about Autism, I suggest you also need to learn more about yourself and how you can build bridges instead of walls.
I love this video. Watching from London UK 🇬🇧
Great video. Watching from London UK.
Thank you for this. It was a brilliant incite and comfort. I found that I relate wholeheartedly to most of the things you said, and there are others that I don't know. Where I don't know why I do certain things, or feel a certain way because I've never asked myself, and no-one else has ever brought it up. Except the old accusations of being 'too quiet' and 'oversensitive' and 'overreacting'. To me, that was just people being mean by criticising my personality, which I can't change, because they can't find anything else to criticise. There are probably still things I do that don't realise 'aren't normal'. I've certainly, and only recently, found out that that's been the case my whole life for a whole bunch of things! Now I'm nearly at the point where I might go see a professional and get tested. A friend with autism has been trying to get me to do that for some time. She brings it up every time we meet. But really, it's stories like yours that shock me into seeing the possible truth in what she's saying. So thank you.
I agree with you Linda… great insights in this video ! I hope you get the support you need, and most of all I hope you have lots of fun along the way. All autistic ppl like us, are very special with many beautiful attributes and amazing talents. Just ‘do you’ and be proud of yourself. No comparing, okay ! 😬. And don’t let anyone tell you otherwise 👍🌈❤️
Very good description
You described me to the tee I get overwhelmed at times trying to explain things and describe what I'm feeling. Thought process is overwhelming at times too many thoughts at once hence the ADHD in me I never fit in nor cared to still don't but highly intelligent at least I think so not being arrogant but took years to gain this confidence. Not many friends except my husband who is also on the spectrum. Love you all autism is not a disability it's a awesome ability 🙏🏼 peace and blessings 🙏🏼❤️
this was great ty
HAPPY ACCEPTANCE DAY!!! 💜💜💜💜💜
You deserve much more views.
Thank you!!!!! I can identify with most of those ❤❤❤❤
Thanks for sharing
I relate to a lot of these!
“Struggling between being a ghost, and a spectacle”
Steph can I meet you? Something I needed to hear.
Very much the same for me. 💛
I relate so much!!!!!
Lately I’ve been looking into the adhd side of my diagnosis (I’m an autistic with adhd) and mom suggested most of my struggles might actually be adhd related, but some of the things you listed are very true for me too
I think I never really got a good grasp of what it means to be autistic
We just are
Pleased I found this. You sound just like me. Thank you.
... I can relate to most of this.
NOT a disappointment at all whatsoever!! Tamekka I love you too :)
Wait, is she talking about my life? She talks about herself but it really feels like she's talking about me❤
Great video and channel! You and I are a lot alike. I subscribed :)
You pretty much nailed it. Except for me, I never truly learned how to 'mask' as well as I should have ...
Mask is for narcissistic pple aka addicts. We feel their pain and emotions literally etc
i have low fuctioning autism so i struggle lot with talking to people
i cant go outside by myself unless someone with me or i have panic attack
music helps me lots my mum said she found out i had autism when i was 3 year old when it was 1995
big sounds i cant cope with much
anything soft and fluffy makes me happy :D
all my life i keep getting told i attention seeking even when im not and was just being happy
hope this make sense take me ages to get stuff from mind to words :(
It makes sense to me!
My friend asked me what makes me think I'm autistic. I kept listning stuff that are very much autistic. But this puts my feelings in words much better than I could ever do. I'd say 90% of the stuff you said applies me.
@@frenne_dilley I know. I've been struggling all my life. It isn't untill recently that I finally figured out why. I going to get an assessment one way or another.
I hate it when people use autism as a weapon, I liked it when Quinn explained about in his latest video of Autistamatic on UA-cam, that there other features a person may have isn't Autism, like epilepsy there for the person would have Autism and epilepsy, and not just Autism. He explains it better than I just wrote.
Sometimes it is hard to figure out what symptoms go with what disorder.
Do any other autistic people just *love* wind? The sensory input is amazing and it makes me so happy. Especially while listening to an auditory stimming song on loop and spinning or hand flapping.
I hate leaving with unanswered questions etc. Getting better at it by letting it go
How does your motor control change? For me if I’ve been subject to sensory or cognitive overload, I lose coordination in my limbs and become weak. Walking is more of a shuffle with my weight towards my toes. This can last for days, it is also present when I wake up. My coordination is always worse if I’ve had a stressful day previously my coordination or weakness does not improve. Does anyone else experience anything similar to this? When I’m not stressed/ in burn out I have good gross and fine motor control.
I need headphones now more. Broke my old record without; can't do that much
For the past 3 years I have been a participant in how Autism/ASD affects aging and aging impacts Autism. The study is being conducted as joint research by couple of Universities. (I am one of the oldest and the study has just been extended out another 3 years!) I am 70 and they are preparing to bring me back in for updated review and LOTS of testing.......How am I doing?
For me, to describe what it is like to be Autistic cannot be described as a current state only. Since I grew up in a World where Autism (or Aspergers) was not a diagnosis, my daily life was much different than it is today. Most of my time was spent trying to navigate a Neurotypical World and not understanding why I was a square peg in a very round World. So if you were to ask me what it "was" like to be Autistic, it may take a few day long discussions.
The person I am today, is still the same Autistic person I have always been. I still have the same exact challenges. Yet, having gained a mass amount of knowledge of Autism and MYSELF, I have a very different perspective of myself. With the 70 years of experience, I have learned many ways I can navigate better in life. Some things require compensation. Some things require inner growth. Some things I have just accepted as "just me." I would say the past 8-10 years I have had greater control of myself and my environment. I am very open to sharing my challenges with those close around me and that has garnered me respect and acceptance. I simply do not see or experience "The World is out to destroy Autistics" profess to experience. Maybe it is my personality, or just the dangerous number of candles on my birthday cake.
Ask me when I was in my 20's what it is like to be Autistic, I would have said "very chaotic and many times over whelming. I do not know how long I want to live." Yes, at times it did get that bad. Fortunately, the "attempts" were far outnumbered by the thoughts or desire. The physical scars are no longer visible. I have grown past the emotional scars.
I will leave it to the Research Team to do all of the scans of my brain and see if physical changes are occurring. I will leave it to the Psychologists to deduce if my am experiencing personality shifts.
But.....Now days I live with and relish the positives and have learned patience with the challenges (what many call negatives).
Ask me today what it is like to be Autistic I will simply say '"AMAZING."
I relate to pretty much everything she said. She was very brave to share such intimate aspects of her life.
Personally I don't want anyone knowing I have a problem even though I know it's futile to try to hide it. It is something I am not proud of or happy about even though I had no say over it to begin with. If I could have say I probably would have aborted myself.
I have often wished I never was.
One thing I haven't heard explained yet is WHY the eye contact is uncomfortable for so many of us.
With me eye contact is uncomfortable because it feels too personal, almost threatening. That's how animals take eye contact if they don't trust you 100%
Eye contact also corresponds to many abusive memories where the person was looking into my eyes while they were hurting me.
Not random people, people I knew and at one point trusted, an ex boyfriend, family members, my own mother...
I identify with many of your experiences. One of the worst feelings is to be sure that something is wrong and suspect that it is something in us and try every possible adjustment and discover that we are still the prime suspect.
I tried all kinds of settings but it is not true that I could adjust anything. I will never instinctively react to other people's social cues. I must always distinguish them consciously. It's still very very interesting to be autistic and very very stressful.
How long and how much does it cost for a proper diagnosis ? I believe I may be on the spectrum but I’ve heard a lot of negative experiences when someone tries to pursue one with people saying it takes a long time and is expensive and sometimes they are dismissed by the person assessing them
I am an older lady of 69, and I have only recently begun to suspect that I am moderately autistic. I have taken 4 or 5 tests online, and I am working on getting an official assessment to find out for sure. I was told by my insurance provider that I need to see a neurologist first, and then see a neurological psychologist next. If I get an official diagnosis, I don't think I will feel very much different from the way I have always felt. The only difference that I can anticipate is a sense of relief and how much the diagnosis would explain. It would explain a massive amount regarding my past. I can't say for sure if I would be treated any differently, but I don't think I would be.
Someone said “it feels like everyone has the script and I don’t.’ That feels right to me, also I hate large group activities and I often cannot function well when there is a social component to any task, though I can cooperate well with one or two other people, up to 5 if they are present and give clear instructions; I resent judgments of others who will never know our deficits yet adopt a ‘boot camp’ mentality as though their way of achieving will be the only way persons with disabilities can. An absurd idea.
What is your opinion on anton lavey
So the whole “still have an emotional stir about…” - is this a thing??? I resonate so hard with this but, honestly I assumed everyone had these things??? (Not that anyone has ever really shared that though) I have a handful of memories that if they pop in my brain, they cause me emotional upset. I literally have to shake them out of my head because I cannot think about it, otherwise I will have a panic attack. Is this not common?!?
Yeah hygiene demands... Relatable.
The problem for me being it's repetitive and I hate doing repetitive stuff... Unless it's in a video game. That and unless I am engaging in a lot of social situations, I just don't see the point when all I do is sit at home playing video games. If I had a job, I would be more inclined to meet hygiene expectations.
Yeah, my hygiene went down with the Covid shutdown and nowhere to go.
I just use pain medication in medication personally etc anymore so I feel all the pain. Tammie heart good amekka says. Imagine that!!
I feel like a horrible person for not remembering this from your livestreams, but who is your favorite character/show?
P.S. The bit at 4:31 is something I very much relate to. High standards for ourselves are both a gift and a curse.
Haibara Ai/Miyano Shiho from Detective Conan!
I love thunderstorms
Sensory issues extremely hard
That's why tamekka started smoking & drink pop since I was young too
Can't block out sounds that are 30x louder
Omg 🥹 im just coming to terms with this. I feel like I inadvertently learned to mask really well cause one of my special interests is behavioral science. I'm now thinking my mom is AUDHD as well as me and my sibling & my dad had ASD. I feel like my world has been turned upside down
rejection sensitivity ofcourse applied to me as well. But this depends on the persons. Ofcourse, that was the main problem with flirting.
(I think the only case where I did not had total panic while flirting was when a woman directly, in her third sentence said "I want to sleep with you". And that woman tricked me in the end.)
In normal social spheres, I almost do not care about being rejected. Sometimes, I even enjoyed beng engaged in outright hostility. Especially in some political discussions. (Once, in a discussion, a feminist told me, I should except that I do not deserve a girlfriend and I was sexist for even wanting a girlfriend in the first place. A short time later, when I got my journalism job, I picked some texts of that feminist, criticized her, called her positions completely lunatic and dangerous, and I got a price for writing an outstanding article afterwards. Then, I happily danced around my notebook like a total lunatic and frequently screamed Carl Schmitts quote "all politics is based on the friend enemy distinction", while laughing. No joke. That really happened.🤣)
An older site called anonymous conservative once had a rather interesting thesis: That your ability to handle rejection influences your position on the political spectrum. And there is a lot of truth in that. Most current left wing texts basically describe getting rejected as the worst thing possible and utopia as a place where all persons are "liked and accepted". While on the other hand, many right wingers and libertarians describe rejection as a fundamental part of human nature and in a way the only chance to maintain a peaceful society. (Especially Carl Schmitt and Hans Herman Hoppe.)
The logic behind that is basically that there are 2 forms of hostility. One is relative hostility ("I dislike you. So do not talk to me again" and "we are hostile to each other because we disagree on specific things"), the other form is absolute hostility ("I dislike you so I wont stop until you are dead".) The "paradox" now is, allowingrelative hostility, in this theory, prevents absolute hostility. Forcing people to get along with persons they cannot stand does not decrease hostility but increases it.
This might explain the difference in schooling questions. Especially on topic of autism, the topic of bullying is well known. Many autistic persons on the right wing and libertarian spectrum I know (myself include) say, homeschooling/unschooling is the best thing to react to the bullying problem, and that school causes conflicts leading up to bullying. On the other side, the left wing in germany is totally opposed to homeschooling. Instead, they think bullying is soled by establishing a "Schule für Alle" /(One school for all) solution, where all people and especially all minority children are forced to attend the same school and are forced to like each other. And this will establish a paradise where no one gets rejected and bullied. And anything else would be discrimination.
Most libertarians and conservatives I know say that this would be completely counter productive and would increase conflicts and bullying far more.
Interestingly, this discussion perfectly mirrors the theory of anonymous conservative, that the current left wants to "abolish" rejection and all else say rejection needs to be managed.
Lots of liberals think conservatives are sheep who avoid being rejected. The conservatives think the same about liberals. My guess is that both sides vilify and have too many preconceptions to see the other side clearly.
Most people cannot homeschool their children. Some would say that homeschooling children doesn't prepare them for the evil world. Just thoughts. I am not against homeschooling if it is done carefully.
It feels like I'll never be loved again 😀😀😀
💔 you will! It's definitely a big feeling to combat though 💛
The only thing I think you have to go on are things you've identified as differences between non-autistics and autistics. For one thing, you can be VERY good at some things because they're of major interest adn so you've studied them. Switching to other occupations can be about as much of a challenge as driving nails into wood using a saw. Saws are VERY good at cutting wood but fastening two pieces of wood together can be a true nightmare.
i’m a failure in school and person lol oh well life is so beautiful and short
💛
Hehehe sounds like me😏🤪
It is an absolute nightmare and I loathe every moment. It is impossible to make friends and when you have friends they are all autistic and don't want to spend much time with you. If they aren't autistic they will be cluster B.
Overthinking EVERYTHING
I'd like that twice if I could!
White doves.. the innocent and clean hearted win in the end!!
Interview me soon
That was the problem from the minute tamekka was literally born
Pples opinions don't matter in the end
are you a libra
I think so!
@@StephanieBethany aww you’re so pretty & kind like a libra sun .. cool! 💗💗
Just yourself and shedding old labels holding back that was wrong. Truth vs. Lies
An addict stated she was losing friends and in music cuz of their own lack of empathy!! Karma
Feeling "out of sync" with the rest of the world is what it's like.
Everyone’s on the spectrum. there’s nothing wrong with you. live your life.
And throw your phones away they’re eating away at your mind .
You seem like a typical person to me. Maybe a bit more emotional but pretty typical