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the unspoken struggle of not looking autistic enough
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- Опубліковано 31 лип 2024
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High functioning is a label used to deny needs. Low functioning is used to deny the agency of a person. That's what I see.
That’s what I see and why I refuse to be called ‘high functioning’ because I always ask, how exactly am I high functioning? And it’s a disgrace to call others ‘low functioning’ when their achievements might far outweigh the achievements of many others but when compared to nt’s, it’s easy for nt people to write off the autistic person’s achievements because they don’t compare to theirs 😢
In my experience, both sides of the spectrum in terms of "functioning" (which has always felt so gross and capitalistic to me) struggle about the same, it's just that "high-functioning" folks can better mask it. A "low-functioning" person is openly having a meltdown, whereas a "high-functioning" person politely goes into the closet to have their meltdown, graciously sparing "normal" society the inconvenience of having to accept their existence as a neurodivergent
Yesssssss! I understand that completely. Some Autistic people still use those terms and I think we as autistic people got to stop using those terms cos if we do then everyone thinks it's okay.
@@bsbfan4life26nkotb Yeah, also I just think the labels are useless because they don't really mean anything, it's based on people's perceptions of an autistic person. I think people need to listen to autistic people when it comes to their needs.
@@autumn5852 I agree! I appear successful to most people but life is TOUGH and I’m exhausted from ‘functioning’.
I am good looking tall, well spoken autistic man.
I get leadership roles asigned to me and I can keep it up for 1 or 2 months.
That is when I am stupid enough to accept that role.
When I am at home I crash.
I can shower and eat and I lie on the couch. No organising. No cleaning. Nothing.
The amount of hours I can function reduces every day until I am completely passive.
I can function. I can even function well above average.
For a while.
Long enough to be perceived as able.
Not long enough to be functioning in society.
But it is burning me up.
Now I am on disability.
Though I can be normal passing.
Masking is eating me alive if I do it too much. And I have been masking my whole life among family.
I rather be my weird self and get odd looks from people.
I completely relate!
Yes yes. I’ve always been offered management positions in jobs, but have never been able to keep a job longer than 6 months.
*assigned
Wow, thank you for this. This is me in my current job.
I am a woman and, same. Same experience.
did anybody notice that most of the gatekeepers of autism are not even autistic?
i am in a large group of autistics who support each other, congratulate and celebrate those who’ve finally got their diagnosis.😢😢😢
That's what I'm saying. It's people who aren't even autistic who think they know and try and run things. They even know what they are talking about most of the time.
Really ? I found the gatekeepers were autistic and they excluded those who didn't agree with them and weren't open to running the groups in different ways. They weren't open to any new ideas.
@@honeybugart Are you saying that you make dark jokes about autism in front of people that don’t know you’re autistic, and then get upset when they stand up against your dark/mean joke? In that moment, they believed that you were a non-neurodiverse person bullying people with autism. Aren’t you glad that they would defend against “you”? Of course they got quiet when you finally revealed that you yourself were autistic, because now they know you’re not a bully, but simply using self-deprecating humor… I’m grateful to those people (whether they themselves are autistic or not) because they would speak up against real, actual bullies making real, actual mean jokes about people with autism.
Oh yeah, "warrior moms." Also note that most of their problems with Autism are that having to look after an Autistic child is inconvenient to _them._ Lady, find out what your child likes doing, and give them more of that. Stop expecting them to fit into a pigeonhole and you'll both be happier.
@@lalalalaaAa123 yes. Thank you. People aren’t supposed to always guess things right about you. You have on one hand a few people who may be ignorant and judge you simply based on the things you say, which is completely natural since it’s the only safe option and the closest to reality. Then on the other hand, you have another person who judges these people and blames them based on their own assumptions or ideals that come from their personality or maybe past experiences, ignoring their true good intentions, which is however not okay.
Now I will add that , in case they knew about you and they still didn’t like those jokes, they are still not to blame and I will explain. Imagine you’re with a bunch of friends and none of you has depression, then a person with depression joins you and stars making dark jokes about depression, how would you react? Would you find that funny? The group will naturally feel very awkward since they don’t relate to the joke and at the same time they wouldn’t know whether it’d be okay for them to laugh while others are suffering from it. It’s like the n word, white people don’t say it even if their black friends joke about it all the time because they don’t belong to that community. It actually proves that these people are honorable and you should appreciate that, not turn their respectful act against them.
I am a woman. When I don’t want to mask, I purposefully dress sloppily, wear ugly glasses, and leave my hair untouched, and then people leave me alone. Honestly I feel more like myself when I’m “ugly” and people ignore me.
But then again I hate dressing up, so it’s a win win for me lol
Probably being an “ugly” woman is the equivalent of being an average man. I’m putting on extra weight on purpose so I don’t get unwanted attention from people.
Also I noticed I will look “worse” when I look visually look good and act autistic, vs when I “look” autistic and act autistic. The former just looks like “a foolish woman being mentally unstable”, whereas the latter just “looks normal” if that makes sense.
@@ABC-jq7ve That makes sense. I outwardly _appear_ neurotypical, so people get an uncanny valley effect from me when I can't maintain a mask. I'm also pretty inconsistent with social interactions, depending on my energy level, which also makes me seem "off." I get the feeling that if I "looked weird," I wouldn't creep them out so much when I drop my "act."
@@ABC-jq7ve : Don’t, I found out that there are predators for every weight category. I thought I wouldn't get sexually harassed anymore when getting bigger. Didn't work. Still got sexually harassed and got verbally harassed by 'normal weight' people for being a 'f#t, lazy, sloppy and undisciplined p×g that disgusted people. You won't believe what people think is perfectly ok to say to an obese person.
I was legit DENIED an autistic assessment a couple months ago because "But I'm looking at you and you don't LOOK autistic". Like, I paid for a couple appointments specifically to get an ASD assessment and, in both appointments, he REFUSED to do the evaluation, which means I ended up paying a small fortune for a service that wasn't even provided. Now I'm seeing a different therapist and I don't know how long it'll take for me to get diagnosed (or if he'll even officially give me the diagnosis) but, after just one appointment, he told me he could see CLEAR SIGNS of both ADHD and ASD in my and I was so taken by surprise that I almost teared up because I'm used to being scoffed at and mocked, but I'm not used to getting that level of validation. But I'm trying not to get my hopes up because I'm low-key traumatized by previous therapists I've had so I'm still really on the defensive about this trusting this guy because I keep waiting for the shoe to drop with him as well.
the trauma coming from therapists invalidating you is very real, I feel that. Had 3 therapists/psychiatrists tell me "you don't look autistic enough", "you seem to handle your daily tasks too well to be autistic", "it's just trauma", "it's just a social media trend" etc. But I certainly learned to trust my gut feeling and I will advocate for myself until the very end till i get a proper diagnosis. Always trust your feelings :)
@@br4892 I'm familiar with that website. I found it when I looked up some self-assessment tests to make sure I wasn't just "making things up" but, as far as I know, all you can do is do the tests there and then show them to a clinician, right? I don't think there's someone from that website that you can contact to get an evaluation and diagnosis directly from them but, if you can, please let me know.
I hear you. In the UK it's 3years waiting list for an assessment even if they agree to put you on the list. If you have £2700 pounds for a private assessment AND will not recognise it anyway. The irony to me is that your average 6 year old could spot he differences in minutes. How many of us have been rejected and bullied at school?
this makes me genuinely angry. so called professionals just ignore us based on not knowledge, not the information we have today, but on stereotypes created decades ago. all the masking the society is making us do now causes the society to not believe we're autistic.
istg if i ever get off my waiting list and they tell me this, i hope i'm very overstimulated that day and very willing to show them what a meltdown looks like. (sorry for the rant, this really pisses me off 😬)
This would piss me off.
I was diagnosed with cancer when I was a teenager. At one point, I went into a coma for two weeks as a result of my treatment. I came out of it, and I had to learn to walk again because my muscles had atrophied. It took a long time for my body to recover. There was a long period of time where I could walk short distances and appear "normal," but my limit was so small, and it didn't take much for me too exert myself beyond my body's limit. I was told over and over again by people who looked at me and saw me walking like a "normal person" in disabled spaces that I wasn't allowed to be there. Even when I explained myself, I was told, "Well you can walk, and this is for people who are disabled."
I don't tell people I'm autistic now, at 26 years old, for the same reason I stopped using disabled spaces when I was a teenager.
I've been in a wheelchair since the age most people learn how to walk, and I know that you don't need my permission to you disabled spaces, but you have it if it makes you feel better. I have a lot of respect for people with acquired disabilities, because they have to deal with the before-and-after in a way that a lot of people born with them don't. It can be very stressful. Best of luck to you :-)
I just healed overnight from a muscle that atrophied. Miracles are hard. Struggled with it for a few few months. was wondering if I'd be crippled for the rest of my life.
"I don't like this idea that people look at people like me and assume that life is a lot easier for us, therefore we shouldn't be considered autistic. There is a specific type of struggle and suffering for people like me, who don't look autistic and who can seem like we have our shit together, when behind closed doors it's really fucking hard to make it seem like that." This part hit me like a brick in the face. Thank you for all the wonderful content, I've been binging your videos over the past few days.
There's a way to consume content _other_ than obsessively binging it, and then stopping suddenly for nebulous reasons you can't articulate?
Oh, and yes, that statement is also me.
@@dmgroberts5471 omg fr I'll randomly stop binging content even if it was excellent and people be getting mad at me but I can't properly explain why I had to stop. I do the same w books 😭
When I first learned about autism, it was because I worked for an amusement park and my employer was having an autism day especially for autistic children. They described what the autistic kids were experiencing and I got so mad because the community and the parents were helping those kids whenever I felt the same way and nobody helped me. I was like THAT’s what autism is? I felt like those kids should have to get over it and learn to act right, just like I had to. I didn’t know I was autistic until 25 years later. All those years I stayed mad at autistic people and then I learned that I am one. So yes, I totally get it why those moms get mad. Cuz I was mad too, but for different reasons. Those moms are mad cuz they’re doing the work to make their kids exist in society. I’m mad cuz I had to do that work all by myself.
I feel this so much. I'm finally starting to dig into the resentment I feel for my lost childhood, my lost adolescence, my lost early adulthood. I had to do it by myself because no one would look in the right place because I'm intelligent and articulate. It had to be mental health disorders, behavioral disorders, because there was no way I could be autistic. At 40, I finally got a diagnosis and there's relief, but the anger is starting to bubble up again.
@@ainnunyabidniz Same here. I got diagnosed at 40 with ADHD, against the opinion of my mother and my GP. Still haven't got an official diagnosis for Autisme, since my GP doesn't want me to get tested, he says I function too well for Autisme. But recognising the struggles of AU-DHD people I now realise all the clues where there on my school rapports. And it bugs me that I have struggled all on my own with both spectra, eating disorders, physical and mental problems etc. which could have been addressed if my mother hadn't kept it from professionals. In stead saying it was character flaws, lack of discipline and lack of trying.
Always feeling as if I was trying to walk through bog and slush, weighed down, when others walked on pavement
@@Pouquiloury That's how it feels for lots of us nerodivergents 😔 I want you to know your ok and your valid in who you are, and what you struggle with. Your mother should really expand her mind.
I feel this so much. I was officially diagnosed as AuDHD at 35 after struggling my entire life, and my husband’s response was “Well, we’re all a little autistic”. I never felt so invalidated in my whole life 😢
I’m so sorry, that’s awful!! Hopefully he is willing to watch some good UA-cam videos you find that help explain and validate your experience to him. I’m a woman who has been diagnosed AuDHD at 43. Explains my life being filled with loneliness and trauma. I think some people don’t realise how a late diagnosis changes how we look at our entire life. There is so much to process! Then we begin the long journey of trying to work out who we truly are as we start to actually listen to our brain and body and accomodate our own needs. It’s life changing.
I love been high functioning, especially when people keep saying I can do something because I'm smart even if I'm crying in front of them asking for help because I can't take it anymore 🤩🤩🤩
Same 😂..... 😭 😭
"I'm laughing, I'm crying -it feels like I'm dying- "
-Melanie martinez
It's insane to me how many times this has happened and how universal an experience this is 😭 people really just cannot give autistic kids a fucking break. I'm sorry man and I feel u
We're wired differently, even from other Autistic people. Your brain is using hardware to run software it wasn't designed for. There are things you _can_ do, things you just can't do, and things you may or may not be able to do on a given day.
I can give a university-level lecture on the First Crusade with about 15 minutes prep time, but I can't say "good morning" to every person in a room. Like, ever. Sometimes I can make small-talk with a cashier. Sometimes I can't answer the question, "how're you today?" without an awkward, stuttering pause. I can write reams of software Test Cases in precise, clinical language. I can't write a comment on UA-cam without 40 minutes of proof-reading, editing, and planning.
The sound of glass bottles loudly clinking together can ruin my entire day.
Swings and sledgehammers.
@@dmgroberts5471 omg literally almost same
@@dmgroberts5471 and it gets ridiculously fustraiting to hear "if you can do this ➡️ you can do that ⬅️ " even though the 2 things are in completely different lanes and require a different way of processing for it, you may even need more help processing it.
Like "if you can study science yourself can study math yourself" no wtf they are completely different subjects and requires different thought processes for each one. Please don't confuse me! And if I need selective help for one and not the other then just understand that.
We are all made like puzzle pieces in humanity to do for each other what another couldn't. The doctor cures your illments and works well in medical care while you might be an architect who built the very building the doctor stays in.
Pretty sure "if the doctor knows how to save lives then he knows how to apply himself to building homes to shelter lives" logic wouldn't work here lmao 💀
You cannot always garentee a doctor will know how to be an architect and vice versa. So let the doctor be a doctor best.
And let the architect build best, respectfully.
As someone who is suspecting to be autistic but is scared to say it because i think im not 'autistic enough', this really hit hard. (in a good way)
I’m in the same boat as you. I’m trying to become more comfortable slowly over time because I know in the end it will be beneficial for me.
There is always someone worse off than you, this does not mean you do not struggle ❤
Preach
“if that part of me was actually encouraged or allowed… I wouldn’t seem ‘non-austistic’” THIS 🙌🏼 can you imagine if we were actually just allowed to be ourselves and not get scrutinised or bullied to mask and be someone we’re not in order to fit into society, can you imagine just how much happier and free and not feel like a burden we would feel? Like I really hope one day we are able to get to a world where autistic people can just live as themselves and not be constantly under pressure to be ‘normal’ enough or having to constantly hide who we are
Me too friend
I don't even dare to fantasize about that, only to be crushed when reality hits
Oh you could just do that now, and not care about conforming to social norms.
I SO feel your frustrations! I am so over being invalidated with chronic ableism. I am always stunned and shocked that fam and friends still feel the need to question and criticise everything I say and do in order to “help” me. It is invalidating, isolating, soul destroying and reaffirms all those negative thoughts I’ve had about myself before my diagnosis. I just wish that if people don’t understand, instead of attacking and accusing with their prejudices, they would just engage with a conversation …
… I relate 100% and this Christmas things came to a head, when my family arranged their Christmas Day, behind my back, which included my son but not me, which meant I was completely alone for Christmas and they were scared to tell me so I only found out a few days before Christmas, and they honestly expected me to me ok with that 😮 55 years of having a big family Christmas to be told you’re not welcome but you must be happy about it and not show a single emotion other than being happy about their treatment of me.
So finally, I’m done - I broke the chains that were binding me to them and making me miserable.
I got diagnosed with autism 5 years ago and adhd 1 year ago and even though I’ve given them some books and info about autism, they haven’t bothered to read it and furthermore, it’s almost as if I became invisible to them after I got the autism diagnosis ~ but since I broke free from them, I’ve never felt so free and I went to the sea-side by myself for a couple of days and had the best Christmas Day of my life and I’m amazed how I managed to get through life this far, with all the dreadful Christmas’s, but the coming years will make up for the former years of abuse, trauma and the effects of living with undiagnosed autism and adhd.
In my experience, if people care enough about us they’ll make an effort to at least find out how they can help etc and start believing us when we say something overwhelms us or whatever, and in my case, it’s blatantly obvious to me now that whatever my family think of me, it’s not enough to put the effort in to get to know me and I am no longer willing to spend any time on people like that, I need all my energy just to do life and from now on I’ll be setting myself up for success, supporting myself and leaving them to get on with their lives. It’s sad but I can’t carry their sh!T anymore.
@Autumn 😭🫂😭🫂😭🫂😭🫂😭🫂 This same thing has happened to me w/ my family & my son SO many times, not even just for x-mas. They have ruined my relationship w/ him too, talking behind my back w/ a false narrative, rewriting history and falsifying my intentions by projecting on me. I see you. I'm about to be 41 and just getting my diagnosis. I'm trying to come to grips w/ being a sort of 41 yr old self-induced orphan. It's so hard and so scary and so painful... but the abuse... so much trauma and abuse... it has to end. I'm so sorry you have gone through this too. 💔 🫂 I'm gonna be alone for my birthday again, but am going to go to the beach and just be with the sea. I don't go there enough.
@@chimeracleshappen
I'm personally going through the diagnosis process myself at the age of 47 for very similar reasons.
Yep, everyone just assumes I’m an asshole, despite their history with me, because if you’re an attractive neurodivergent female, everyone assumes you are a snooty bitch at base
It can bring you to seriously dark places because it’s like the ultimate gaslighting and invalidation.
I’m "high functioning" and recently got diagnosed with autism and adhd (add). My mom has been questioning and getting annoyed over me getting "more autistic" since my diagnosis..Like mom I’m just trying to breathe and not mask all the time, stop yelling at me for stimming when you know I’m autistic!
I hate that people think those of us who are high masking do not require supports or that we got our diagnoses out of a cereal box or self diagnosed because we think it is trendy.
I can attest to the fact that my “flying under the radar” and remaining undiagnosed until I was 50 has taken a profound toll on me: physically, emotionally, and in my relationships. I am a frigging mess. Knowing I am autistic is awesome because now I know why everything allistic people do so easily or instinctively takes immense effort, practice, or study for me, but it doesn’t make doing all that stuff any easier.
We would never complain about someone being diagnosed with a broken left arm on the basis that they are right handed so why do people do this to us?
I have so many thoughts and feelings about this and one of them is that I stand with you…I agree.
I think the autistic community treats everyone so equally. However, parents and other people who doesn't have autism but take care of us feel frustrated because they are exhausted. I'm so sorry for everyone
Yeah just recently my mom lost it with burnout and frustration with me and I'm feeling not very great if there was a 100x more extreme version of "under the weather" that'd be me rn. Bc her anxiety over me increased my anxiety + feeling bad that I made her react like this and I don't like it when she notices my stress/anxiety/sad and gets nosy about it bc she always does too much so now I wait until she can't see me before I show my tears and anger
I am undiagnosed but suspected autistic, and I feel like it’s impossible to talk to family about this. When I have brought it up in the past my dad will say “there’s no way you’re autistic” because he’s worked with autistic people at his work and I don’t “act” like them. What I hate is that my parents will say they saw no signs of autism in me growing up but when I ask they can’t give me accurate time frames for my growth milestones and any specific behaviors I had as a child. On top of that I grew up masking so much that I would feel completely drained and miserable after being out in public around people. I am a high-masking woman comorbid with ADHD so all of that together makes my autism “invisible”. The part you spoke about wanting family to see that autistic side when you need them to I really resonated with. So often my family doesn’t understand what’s going on with me or why I’m crying or why I’m not speaking because they don’t take into account that I have told them before I think I’m autistic. They just don’t believe it because they didn’t see it growing up. But if most people in the house are neurodivergent I think it makes it even harder to see.
I feel ya on this one, used to be in a situation where family didn't listen to me, making me think that me telling them how I felt made no difference and I had developed extreme passive aggressive problems. Thankfully that's now.
You're so well-spoken and have a way of putting into words these thoughts that have always haunted me. I can't fit in with average people, if I act 'authentic' I'm heavily criticized, if I'm struggling with burnout from masking I'm told "just be yourself and relax", I can't hold a job, my executive dysfunction/ADHD makes me a shitty housewife some of the time. It's exhausting being so disappointed in myself all the time and wishing I could just fit in and stay under the radar. My entire life I've been told to stop overthinking/fixating but it's so automatic to me that it feels like breathing, and it hurts to know that my natural brain is so annoying and frustrating to others. I'm so sick of receiving harmful or nonsensical advice from allistic people, as if I'm simply too stupid to think to try very basic things, when in reality I've tried nearly everything to 'fix' myself. The conclusion is always the same: I can come off as mostly normal for chunks of time until I hit rock bottom burnout and get very ill (chronic pain, migraines, severe depression, like a low-grade catatonia) for 3-8 months, or I can avoid dealing with the regular world as much as possible and be content with my husband, cats, projects, tasks, and interests. Of course one of those makes me look 'crazy' and the other makes me 'lazy'.
Something you said impacted me so much that I wrote it down: "Sometimes you don't know what should be, but you do know what can no longer be."
I think a lot of the issue lies in the concept of intellectual disability. Family members and caretakers that spend time with an autistic person with ID tend to get very angry when autistics without ID get more 'attention'. I do comprehend their frustration, but they often display no empathy for our situations and show poor understanding of ASD as a spectrum. My personal belief is that psychology has simplified neurotypes far too much and that realistically ASD has many manifestations. It's likely too difficult for allistic professionals to work through these distinctions to categorize them further, but I do think it's important to (for the purposes of better understanding autistic people) separate by phenotypes when doing research. There is also the issue of all the undiagnosed: the high maskers, women, those with comorbid ADHD/ASD that camouflage each other, PoC, all the people diagnosed with "it's just trauma", etc. I do think resources need to be allocated properly to ensure all types of autistics are being supported, properly researched, etc. That said it's inappropriate for anyone to lash out at people that aren't precisely in the same spot on the spectrum as them/their loved ones.
Well said.
And my question is: is phenotyping not exactly the stuff Levels (1-3) are supposed to achieve?
hey i just wanted to say i really needed to hear this tonight thank you so much i really really appreciate you ❤
i seriously felt like i was reading about myself, thank you for articulating all of this
Thanks for putting into words what I’ve been feeling for some time now 💚
Yes, this I recognise. A 'friend' said: how come you are doing marvellous at parties and when I call you for doing stuff together you are unwell and decline? Well.. I have stopped to explain my AU-DHD and the consequences of socialising for me. I don't fit in with any category. Too this for Neurotypical, too that for ADHD, too that for Autisme...
I’m actually an actor, who’s just just now discovering his autism diagnosis on the verge of 21- and goodness, being “good-at-masking” and “allistic-passing” is such a struggle! Recognizing my autism has been monumental in helping me re-frame everything - But to everybody else, I’m still going to be treated as allistic.
I have to learn how to insert boundaries and educate
friends & family… even medical professionals (even though it’s uncomfortable!)- Thank you so much for this video! You have no clue what this means for the community!
Lucky you found at 21 . I found out at 33 and figured it out for myself. My parents were clueless but they are still aspies in denial
@@sarcodonblue2876 65, here.
This is a great subject. I am self diagnosed, I believe it is because I'm not very apparently autistic(as a kid it was more obvious, but my parents decided not to get me tested). I can mask very well and can put up very well with my emotions and internal struggles to appear normal. I'm a people pleaser because I'm so insecure about if people will like me or not so I constantly put up with stressful situations. I still struggle in social environments and am a bit odd. The thing is people have no idea what is going on in my mind and what happens when I get home and am alone. I've been struggling with depression for years yet nobody knows because I mask so well. I even mask panic attacks so well that people don't notice. When I get home sometimes I am a wreck. Outwardly I'm just a little odd but there is a struggle behind closed doors and I do need support especially now. Years of trying to live as a ND undiagnosed autistic young adult in a NT world has wreaked havoc on my mental health. I'm not any less autistic than non verbals, it's not my fault that we are all put in one group under ASD. The DSM 5 sucks, end of case. Autism spectrum disorder was literally invented to make diagnosis of similar disorders to autism easier to diagnose as just ASD.
Snap 😢
Although I resonate very strongly with what you have said about your family’s treatment of you (as my situation growing up was very similar) I disagree with your criticism of the DSM 5 - as you say you are no less autistic than some autistic individuals who have limited functional language.
Ergo Autism affects a wide range of people of varying ability. Furthermore Language difficulties and serious intellectual disability is not essential for a diagnosis of autism - hence why they no longer have Asperger syndrome and PDD NOS as separate stand alone diagnoses. In contrast to earlier versions of the DSM the DSM 5 better emphasises that autism is indeed a spectrum.
I hear you. You gave me words for how I feel. Thank you.
You have just put my entire life into text.
Update: I have officially been diagnosed as autistic, on the part of the spectrum that used to be Asperger's Syndrome.
This is so me
All of this is so relatable. The fish vs. human analogy is so spot on. I always describe masking to my husband as if it feels like I’m holding my breath and can’t breathe until I’m by myself or with him, and by that time I’m “gasping for air” i.e. I’m so overwhelmed that I melt down or shut down. I’m really trying hard not to mask now that I know I’m autistic, but it’s sooooooo hard. It sucks that there’s others like you and me going through this, but it’s comforting knowing I’m not alone and that we at least have this community to turn to.
You're not alone. I only feel comfortable at home with the door locked and all the blinds drawn. Then I can breathe out and let the tension out of my shoulders.
Then I get to be myself and have fun.
Same same same! I feel just the same. Wow it's amazing to know how many people there really are feeling similarly!
@@dmgroberts5471 I feel the exact same way 🥺
It makes me wish I could stay inside forever lol
@@lucidberrypro Yep. Autistic heaven is basically a small room with a lock on the door and windows no one can see into.
And all the furniture has the good fabric, that's not scratchy and doesn't make your teeth itch when you touch it.
@@dmgroberts5471 sounds like heaven
This video made me cry uncontrollably. This experience is my entire life. I was born with Sickle Cell Anemia HbSS and have been diagnosed with Audio-Tactile Synesthesia, Sensory Processing Disorder, T1 Diabetes, Clinical Depression, SAD, GAD, and now Autism Spectrum Disorder.
Everything that I go through is taking place on the inside with no obvious outside appearance. I constantly get labeled as an attention-seeking snowflake or a “munchie”, someone who uses disabilities as an excuse even though I have to work 10x harder to get the same results as a person who doesn’t have the same difficulties. People forget that I have these things going on 100% of the time 24/7 - I can’t turn them on and off, but it’s easy for them to forget because they can’t see it going on on the surface most of the time. I have been told my whole life “Oh, don’t say that, you’re different and you just have to practice/try harder/do more.” Even though I’m doing the absolute most to not succumb to the pain or draw more unnecessary attention to myself. People really don’t understand: my mask is so good, so pristine, so opaque…because I was punished so severely by the people around me when it fell or faltered in any way. I’m exhausted beyond vocalization. Some people even get this sick twisted jealousy towards me, like “Ugh, I have to come up with more problems so that it doesn’t seem like this gorl works harder and does more than me while having more obstacles to overcome than I do.” Like it’s a f*cking competition any time I talk about any part of my life that pertains to one of my diagnoses. As if I wouldn’t give a few of my limbs and organs to have a brain that would let me sleep and a body that wouldn’t die if I don’t have an insulin pump attached to me - causing my skin to become scarred and requiring a 6-step skin hyperpigmentation regiment to help heal the damage every time I shower. As if I revel in the fact that the day I took off due to pain crisis was a day spent in unfathomable pain and torture, where I couldn’t sit or lay because it makes the pain worse so I stood for 5 hours holding on to the kitchen counter waiting for my medication to bring the pain down enough to allow me to writhe in pain in my water-heated bed instead and hope that the warmth brings a modicum of relief (electric mattress heating triggers sensory issues and hives and skin rashes and is generally not good for regular exposure to anyone). Yeah, but I got the day off uni…i guess. It’s a constant invitation for people to try and pick apart everything about me and line their personal struggles against mine. God forbid I laugh or have a good time at all in front of people, the next time I have a problem and ask for some understanding “…but you seemed fine at the dinner last week…?” Is the first thing anyone has to say…
I don’t make new friends anymore. I got tired of being let down and seen as a 1-dimensional being. I got tired of peoples animosity towards anything I do because for some reason I’m something for people to compare themselves to. Like “Ugh, even SHE got it done and has all these probably-made-up issues when I didn’t get it done. I thought she had xyz issue? How could she do something? It’s probably made up anyways!”
That gets tiring and even though I’m not the best ar social queues…I can feel the animosity. Even from my family members… so I don’t share much anymore. It’s easier to just be quiet. Being labeled as too disabled to have fun but not disabled enough to use disability tools is a form of actual purgatory and I wouldn’t wish it on my worst enemy. I was bullied up into high school over being “other” and when I used the tools that would help me, I was all of a sudden “Not ‘other’ enough” to warrant understanding why I needed them.
I wish everything didn’t have to be a “who deserves more pity” competition, why does everyone make it into that? It’s made me insular as an adult and I no longer expect anyone to understand anything about me or do anything to help me, I just do what I need - even if that means dirty looks from people when I park in the handicapped parking. I parked here so I don’t trigger another pain crisis rushing across the giant *ss parking lot to class, Nancy!! I have my medical records right here in my mychart if you are so curious and a portable SpO2 meter so you can check that while you’re at it!!
I know I’m trauma-dumping, I’m in my quiet room so my mask is down, but if there’s any community that’s willing to overlook my transgressions for the actual message in my words, it would be this one in the comments section of this video.
I’m just trying to say: it’s the one thing that will follow me my entire life that I don’t have the ability to understand why it happens. It’s almost made even worse because I’ve turned as much of my diagnoses into a superpower as I can. I don’t want to live in misery, so I always try to play to my strengths and understand as much about the world as I can through knowledge. But I’ve been conditioned out of saying that I’m smart and have elephant memory or that I’m good at any of the things I’m good at because all that society hears is a person who is bragging, not a person who has overcome a lot and had to build self-worth and self-confidence from nothing. I’m always careful with what I share because it shows people’s true colors. When I go into the hospital, nurses treat me like a drug-seeking degenerate because I’m black and people with sickle cell are usually black, so their needs and cries of pain are minimized as their humanity is overlooked. We’re seen as “Sicklers who just want narcos” instead of a human being trying to endure a situation painful enough that some people unlive just to stop having to live in the pain… but no, we’re just drug-seeking Sicklers… 🙄
This goes so much deeper than the people online complaining that other people aren’t autistic enough (what the actual f though like…do they not hear themselves???), this phenomenon can affect everything down to how you’re treated in the hospital by the people who are supposed to be helping you at your worst, most painful times. I desperately want to educate people on these things and draw attention to them, but I feel ostracized and helpless any time I bring anything up. I’ve kind of lost hope in human being’s ability to understand another human being. I fit in with none of the groups who share a diagnosis with me because most of them don’t also have another diagnosis I have. My life has gotten very lonely, but the good part is that I have at least gotten some peace from the loneliness.
I just want whoever reads this to think about some of these things before they go out and… I dunno…gatekeep autism? I guess? *bombastic side eye*
And if you read this whole thing, don’t worry, I’m alright. My sense of humor has saved my life and I’m not joking about anything I’ve said so far and I won’t start now. Learning to laugh even during painful times was necessary and if you’re living through a situation like mine, it is my best advice. Surround yourself with people who can laugh with you and make you laugh, the negative nancies and judgy judies will naturally weed themselves out. I may be disabled, but I’m still amazing and can do things other people can’t and SO CAN YOU. Just remember that how you speak to yourself matters and if you wouldn’t say something to a good friend, why would you say it to yourself? The only person keeping you alive? Exactly, you wouldn’t, so be kind to yourself and support yourself by prioritizing what makes you feel good and comfortable and keeps you curious about the world. The world will do enough to make us uncomfortable, we don’t need to add on to that ❤
I don't really know what to say but i hope that you find someone that actually believes you. People see persons with disabilities and they get jealous because they think that they got it more easy than them when they actually suffer so much. I'm very sorry that you have to go through that.
(And i'm sorry if i wrote something wrong, english is not my first lenguage)
Hype yourself up as much as possible. Celebrate your accomplishments and gifts. You deserve it.
Thank you so much for sharing this ❤️
Devalued for disabilities and devalued for strengths. Discounted, especially, for being human and having human needs while being perceived as "other". Yep. Patriarchy and capitalism are lowly levels of human functioning.
i think being understood but not believed, especially by people who've known you your whole life, hurts the most. i tried opening up to my dad one time and told him i thought i was autistic because he has a son, aka my brother, who is diagnosed. i only saw him a few times because he was intentionally separated from my immediate family, but i always felt so connected to him. i did mild research and related to other autistic experiences. i thought my dad would understand but he immediately shut me down, saying "you make good grades and are functional, you're not like him, so you can't be autistic." this was many years ago. a few months ago i told my sister i was sure i was autistic and i could tell she thinks I'm just convincing myself of this. it is so so exhausting when I'm actively suffering and reaching out and I'm looked at like I'm stupid. and it's really a slap in the face when family members describe how i've acted my whole life that was a clear indication i might save *someeeething* and it was categorized as me just being different.
now that I'm older and i've spent four years doing obsessive daily research I'm more than positive i'm autistic. but since i don't look autistic or never "acted autistic" when i ask for certain accommodations they're not granted. self isolation is when i feel the happiest because i know what i need to learn and unlearn and i can un mask, but it's so lonely.
This video is so needed. I had family that completely invalidated me when I decided to get an official diagnosis. So much drama was caused by me simply trying to help myself. How am I not supposed to feel like I can’t trust these people if they are so quick to say “how dare you think you’re struggling.” It just confirmed my suspicions of them really not liking me at all. There’s no coming back from that even with an official diagnosis. It sucks.! So we have to be there for each other because the odds are already stacked against us. Thanks for sharing!
I have ADHD & Dyslexia, at 47 years old, I had an ADOS screening a week ago.
If a person is self-diagnosed & the people around them are supportive & informed, there may be no need for a diagnosis. The people around them are willing to accept them & believe their internal experience.
If the people around them are not informed, they may be (how do I say this nicely?) unkind in their interpretation of neurodeverse behaviors, invalidating your lived experience is a given, as they don't believe it's real...
I’m so unbelievably tired, I’m stubbornly unmasking even if it means I get attacked or yelled at. I seriously can’t take it anymore, I have to be myself. It’s to the point where im flattered if i upset someone because I didn’t stare them dead in the eyes for 5 whole minutes while they talked at me.
I agree 100%. When I was younger and tended to go into shutdown near the end of the school day, it would irk a particular teacher who would end up reporting me to the principle who ended up using corporal punishment to "straighten" me out, when I cried home to my mom, she immediately marched me back to school (after her coming home from exhausting factory work herself) and cussed out my principal. Note: my mother was a 1st generation immigrant with a VERY limited English vocabulary, but she used every single English cussword on that principle that day (most of which didn't make any sense) she threatened to sue if anything like this ever happened again. I was in utter shock my mom usually adapts the keep your head down/don't make waves philosophy. When she was done with the principle all I said was a feeble "yeah!" I was quickly hushed lol. The teacher made the excuse that I was chronically turning my homework in late, so she made me report to the principle, but even as a 9 yo I knew was because she took my none verbal shutdowns/ mono-tone affect as acts of insubordination and just plain disliked me for it. I might not have high support needs according to some, but I definitely needed my mom to stand up for me that day and it meant so much to me that she did.
I think people like your teacher and principal sense something different about us, something vulnerable, and it triggers the bully in them. Put bluntly; they suck.
I feel like I've delt with this so much as an African American woman; All the ways it intersects. People feel like you shouldn't receive representation or accommodation for Autism when you're "high-functioning" and your existence somehow invalidates them; Or, If you're being exploited in American Media, people who don't feel seen feel like you're invalidating them and "taking up space" for the black experience; or Being Aspec and people projecting their trauma induced "liberation" and aversion to "pureness" onto you; or Being Autistic and insecure women deciding you're going out of your way to "not be like them"; NO ONE seems to be upset with these faulty systems, industries, gender politics, or their miseducation, but rather, the people who are also being victimized by it.
I'll never forget starting to question if I was autistic and trying to confide in my friend and her immediate reaction was anger towards me saying that I was invalidating all the kids her mom worked with that had it so hard and insinuating I just wanted attention. It hurts me to this day because it's something so vulnerable and finally putting 2 and 2 together and realizing that autism is what I could have been experiencing all this time felt like a cracking a code and knowing what was happening made me feel like I could deal with it better. It feels so validating to hear others experience that "don't look" autistic and how fucking hard it is and invalidating it can be. That argument is just so fucking weird, it's the same as people saying I don't look gay, as if these things have one specific look. Thank you for this video and for expressing your thoughts in such a respectful way 💛
As someone who's both gay and autistic, you couldn't have been more right. I'm so sorry you faced this, I pray for your health, safety, blessings, more trustworthy people in your life and love.
I sincerely cried whatching this. Specially when you started the fish metaphor, that hit me hard. I myself couldn’t describe better how I’ve always felt. Thank you for sharing your thoughts with us, you have no idea how much you’ve been helping me since i was first diagnosed. ❤
Yeah me 2. It was the perfect description. I feel like a frickin lonely fish holding it’s breath.
I'm losing the only friend I have because "I think too much" "I talk too much" "I worry too much" "I want to be good all the time". I'm sick of it, I don't want to be alone but it seems it's the only option
I am absolute sure you don't think, talk, worry too much and wanting to be good all the time, is a symptom of the society we live in. Sounds like you need friends who are curious about getting to know you authentically and won't criticize you for who you are. Don't give up hope. There are multiple out there right now thinking the same thing, and soon you and them will be the best of friends. Much love and blessings, Amanda!
@@TheMPExperience bless you, coming from another autistic kid who ran into this Rude kinds of people b4
I have awful jaw pain too! And my tongue is constantly fiddling with the back of my bottom front teeth. I’ve seen a dentist who said it was TMJ and my doctor said it was from grinding my teeth, either way I’ve had no treatment for it but it makes my ear, throat and jaw absolutely ACHE! Apparently jaw problems are a thing in autism - who’d have thunk it hey? Assume it’s something to do with anxiety/stress response we’re always in.
Oh yeah the perils of “not being autistic enough” 🤦♀️
Truly, without sounding hierarchical in any way, I sometimes think that if my autism was “more obvious” I’d probably have had a lot more support and a ton less PTSD from having been misdiagnosed, mis-medicated, dismissed, rejected, bullied, harassed and frustratingly misunderstood all my life!
I’m also a huge fan of Gabor Mate and am almost finished reading his latest book “The Myth of Normal”.
I’m always grinding my teeth and my jaw will click and lock wow I never associated it with my anixety
I am autistic and have had multiple operations for a too small jaw (now fully corrected) ? If autistic individuals are more at risk of such maxillo-facial issues.
Omgosh. I have been having unbearable jaw pain that radiates starting from my jaw to my ear and progresses to a migraine. I JUST googled it today and came across "TMJ". I never heard of this before. It gives me more confirmation of my self diagnosis.
I’m diagnosed autistic and also have TMJ issues. Went to see a specialist for TMJ problems last year and got a bite corrector. Let me tell you, I have little to NO pain anymore! It’s amazing! It’s just a little retainer-like object I wear to bed every night that forces my jaw into the correct bite position. It’s not as uncomfortable as it sounds I promise. I’m so glad I went through with it, no more jaw pain, no more headaches, no more neck pain, no more face pain. Highly recommend seeing a doc! The only downside is that if you’re in the US, you might have to pay out of pocket, and the device can be pretty pricy (talking 2-3 thousand $) without insurance. Because medical looks at TMJ and says “that’s a dental issue” but dental looks at it and goes “that’s a medical issue” and thus no one wants to cover it.
I had to get jaw surgery for sale thing as young adult, I never though of it being correlated and felt like only one that went through this among my peers. Having an invisible illness is tough because they assume I am always fine and when I am not no one really understands , that I get certain things and certain things cause me to shut down. I grew up with learning disabilities but did not want to be placed in special classes cause I feel school was hard enough fitting in so begged my Mom not to put me in those classes. I always hated I seemed to never be up to par. I knew I was different but never knew what it was. As an adult I was labeled ADHD cause it effected me at work to. I also had depression and went on to realize I had PTSD and then developed anxiety all while trying to be functional adult but inside I am worried because although once again to peers it looks like I have it together but their is stuff I get support for that I struggle with from family that I became dependent on them for, but no one sees this. I live on my own so they don't really know all the stuff I get help with.
I appreciate this discussion - I go between feeling like my needs are valid now that I’ve been diagnosed, and then thinking “oh but I can just mask again, I’ve done it for this long” because I’m “high functioning.”
It’s so tough. I look forward to seeing how the discussions around autism continue to change.
your example of arthitis was also very good
i have some invisible physical disorders that cause me chronic pain. ive learned to mask so many aspects of my life, including my pain. i knew it wasn't acceptable to always complain about how i am hurting physicaly, so i stoped until it was to much for me to keep silent about.
the other day i went to a reumathologist and he was about to prescribe me some opioids for when i have extreme pain, and the parent i took with me said it wasn't necessary cause they didn't think it was "that disabling"...
anyways, now im taking another medication that isn't even effective regarding my pain, and that's on masking my needs and a life of comforming to was expected of me
visibly, im not disabled enough, but im uncapable of doing so many things, because for so long i didn't get the help i needed and i got worse sooner than i should have
Oh I feel this soooo hard. One specific situation that made me feel so invalidated and angry was when i used to work at a subway. I just started and this lady came in, a regular, she gave me her order and said "my son is autistic and needs the sandwiches uncut with seven pickles or else he has a meltdown and won't eat it" im like "okay cool no worries, im autistic too I understand needing stuff i certain way, not a problem" and she just goes "oh no, I mean he's REALLY autistic, not like you" and I just didn't say anything else I just made a sandwiches and took her money. That was the first time I had anything like that said to me and it hurt a lot. I just dont get why people have to be like that
I really don't know how drop a mask on a consistent basis, I just slip into "social mode" like a second skin. So I hear this a bunch, part of me even interprets this as a good thing. Especially as a man, being seen as capable at what you do is a huge part of your self image, so that part embraces all the comments that make me feel capable. The problem, however, is that second skin is layered with lead. Imagine like you're at the gym, the first few lifts may make it seem like you can do it all day, but by the time you're at your last rep you're pushing with everything you have.
*insert sophomoric stamina joke here*
Don't misunderstand, I am glad I am high-functioning. Heck, as a guy I have options to (not) deal with people women usually don't. There's a whole slew of problems I could have that I don't and that is great. Right up until I need support. That's where suddenly, I start hearing stuff like you're too smart to be autistic, you're too socially capable to be autistic, your diagnosis is probably wrong, etc. In those kinds of meetings, I need to deliberately break down all the things that otherwise keep me afloat just to be taken seriously. Prepare for a meeting days in advance so you can get through it efficiently and respect everyone's time? Forget it: you're too put together to be autistic. Better to go in with sleep deprivation to forcibly shut down your built-in auto-mask feature, but also get someone to drive you there because being taken seriously and responsibly taking part in traffic are incompatible.
For similar reasons, I tend to avoid 'communities' like the plague. I just can't be myself in them. Part of it being that I don't enjoy being told what I am or am not, but I also like to openly make jokes about my disorder because that helps me create distance. Many communities dislike that, which, fair enough, I avoid that kind of humour when I'm around people whom it upsets. That does mean I have to perpetually mask more to facilitate others masking less. At the same time it would be unreasonable for me to demand others to not take offence. Being our unfiltered selves at the same time doesn't work out for anyone - and someone's got to give.
So uh, yeah. Suppose that's why I'm sending my thoughts into the voids of a 4 month old youtube video's comment section. Enjoy.
@ bijnahonderdeuro: ik begrijp je.
‘’there is a specific type of struggle and suffering for people like me.’’ I felt that 😭
You've worded this so well. It's already quite difficult to not invalidate yourself if you have 'high functioning' autism. The comparison of us taking away space from people with more severe autism reminds me an awful lot of the argument that immigrants are bad because they take away jobs, while the real problem is employers who just want to exploit workers.
I really hope the people who think we're taking up space or making it difficult realise that there is (and should be) space for everyone, and we're not the enemy here. Autism is a spectrum and affects everyone differently and everyone is valid. Neurotypicals who assume all people with autism are the same or refuse to accommodate and listen are the problem, and I hope we can combat that rather than fighting each other for the space we all deserve.
I had to hear my psicologist ask me “why do you want a diagnose? To wear a sunflower tag and get special parking spots??” In a mad tone…… I am soo lonely right now
I just started my second semester of college and I feel strongly the thought of not belonging anywhere. I cannot connect with people, I try so hard and I just can't. Also the work load is crazy for someone like me, I'm trying to keep up but I know I'm lying to myself
This is so relatable to me, I am struggling with this right now and it’s nice to know i’m not alone.
i feel the exact way you do. i started isolating from everyone because I can no longer handle masking and just wanting to exist in a way that feels natural. my workload isn't that crazy but I'm so burnt out I don't have to energy to maintain it.
Thanks for this 🙏🏽 just lost my whole family in one fell swoop this Christmas, which was the worst experience of my life, but it also became the best because now I feel free to be me and not have to pretend to not be autistic with adhd anymore 🙏🏽
I almost made it through the video without crying, then you brought up the nonverbal thing and allistics thinking you're just giving them the cold shoulder
OWWWWWW
Everything you're saying is so on point. When I was a child autism was only in boys so it wasn't even a thought. I spent the first 4 years of school starring at the wall in a trance refusing to write my name on the paper or cooperate at all, I just went into the trance and blocked them all out until recess or something I had any interest for.
I relate to being constantly berated and forced to conform as I was growing up. My mother would often get physically violent whenever I acted in a way that she perceived was weird. Like, I remember once she beat me with a belt or sandals because she was frustrated that I kept quoting characters from the kids shows I liked, and when I visibly stimmed. I have learned to mask well.
But at the end of the day I am always completely, utterly exhausted because of it. I just want to retreat into my bubble. As a result of masking I also feel like I don't have any personality of my own. I feel like a blank slate that just mimics what is socially acceptable.
But as I get older it gets more and more draining. The mask is sometimes failing and I have had coworkers accuse me of being "rude" for shutting down or avoiding them. I feel like I must pursue a diagnosis so I might use as a shield and not have to stress about being perceived as a terrible person, or something.
Omg this video was exactly what I needed. At 48 with 2 sons with autism, I’ve been masking for so long that I didn’t even see it in myself. For the last year I have been physically collapsing and desperately consulting medical doctors to figure out what is wrong, and being gaslit by them all. Now I am pursuing an autistic diagnosis, I am running into so much closed mindedness because of how good I am at masking, how “normal” I look. 48 years I have been trying so hard to fit in successfully and failing, and now I can’t be seen again.
I can relate to this. It really fucking sucks. There have been people who did not believe me when I told them I was autistic Which doesn't help when I have this doubt that maybe the people got it wrong . I'm not confident enough to say I'm autistic
So good, so perfectly said. When you gave the example of the fish, I began to cry. That is exactly how I feel. Because I was forced to hold my breath. They physically, verbally and emotionally tortured me if I did not. I’m nearing 60. I’ve had decades of therapy. It wasn’t until I found an amazing trauma therapist that I ultimately realized on my own that I am autistic. It made every puzzle piece click perfectly into place. Now I understand the why. I’ve been trying to understand wtf is wrong with everyone else to harm such a kind, empathetic, loving human. I can’t lie. It’s a thing. If I do, it’s so obvious because that is one of my ‘things’ that I’m so rigid about. I couldn’t get why telling the truth was a bad thing that I kept getting hit for, so I tried to lie and didn’t do it very well. I always got caught so that became another of my parents’ pejoratives. I don’t lie. That’s. That. They still say I do. Whatever.
Or why being a sensitive person made me look weak. Stop crying or I’ll give you something to cry about was said to me so often I can’t count. And I never understood why I was the scapegoat. Never understood why my face was such a problem, why some people respond to me so oddly. I dove into finding out *why* so I became expert in anything that related to what I was experiencing and how I might make it better so I could be “normal”. I heard that as well. Why can’t you just be normal? I heard that many times , so I tried, I tried, I tried. I did it so well people thought I was perfect. Whoops. I couldn’t keep my room clean, then when I learned to hold my breath longer, I was anally controlling about where everything went. I was overly organized. I couldn’t do long
- term projects or papers, often doing last minute work that was praised as being exceptional. I always felt like a fraud, though I tested at genius level. (Something my mother didn’t want me to know “so [my] head wouldn’t get big.) I didn’t feel or act like my sister but was forced to, so I held my breath and did what they told me to do, and I did that too well.
I am clumsy. Always have been. It’s been my jam, so I focused on working with the human body-and I became excellent with it, so much that two of my careers we’re working with humans and their bodies. All my medical issues; all the surgeries, all the medication, the pain. They rarely find anything, really, except that things are “inflamed” or “angry” or “locked” or going in the wrong direction (dysphasia). I have chronic intractable pain. That means nothing helps. Pain from my nervous system because of the chronic trauma I’ve endured. I get overwhelmed by simple tasks and I feel a bit ashamed that I can’t hold my breath anymore to organize, make decisions-even doing laundry, cleaning my house, or going out to interact with people makes me freeze, then need to walk away and stim or go somewhere small and silent. I have been doing that ever since I can recall but I didn’t know that’s what it was called.
I DO belong in this community! Thank you for saying so.
I’m also autistic and acupuncture helped me with a lot of bodily and nervous system issues that come from unprocessed emotions presenting as chronic pain in my body. It helped that my acupuncturist was a very caring and empathetic person and let me talk about what I was feeling during the session.
Thank you so much for this video! I think we with "lower support needs" (aka high masking individuals) really need to hear this sometimes.
Oof, I really feel you on the "not appearing autistic enough". I have severe imposter syndrome which makes it really difficult to claim the label "autistic" for myself. I am very independent, appear socially competent and am starting a PhD very soon. Nothing about my appearance or demeanor would suggest I'm autistic. But I just feel so different and comparing my lived experience with those of diagnosed- and self-identifiying autistics alike really supports that feeling. And yet, I constantly question myself and engage in this draining back-and-forth between "I am definitely on the spectrum" vs "you are just overly sensitive". Thank you for putting words to my thoughts, you are a very valuable resource to the autistic community!
I just cried through most this video. I am not diagnosed yet but have been down a rabbit hole of identifying with autistic traits for the past month or so and everything you said resonated so deeply. I feel like this space on the spectrum is in the shadows and the way you expressed what it’s like is what needs to be heard. I hope you posted this to that forum and directly messaged that commenter because as a society we need to get this right and do better to support everyone with special needs.
good luck on your journey!
That’s my concern, I get scared that because I don’t look and act like the representation of autism on television that people don’t acknowledge that I’m being honest about my experience as a neurodivergent person and I’m not faking for sympathy. What’s hurtful about that is being a person who was diagnosed later in life, it is painful to be discredited when I think about how creative I had to be to survive life and function in the way that people see that makes them think nothing is really different about me.
Honestly I deeply understand this because my father I feel like could possibly have autism and isn't diagnosed because if this idea that autism is only seen in "low functioning" people and seeing him suffer because he's in deep denile because of his old school teaching and my family is super hard to see. Its motivated me to get tested. I'm so glad I was able to find people who where like me and who struggle and can hide it pretty well. Its so fustrated being invalidated because of how much I feel like I suffer especially in adult hood. I'm not formally diagnosed yet I'm in the process of it but honestly finding that I could be autistic and could get treatment for it gave me so much hope for myself. That I could possibly live a functioning life. So many people in my life have shamed me for breaking down going mute and getting sensory overload and I've been shamed for crying about little things and those reactions are things i could never understand or control. Yet when I tell those same people who shame me that I could be autistic they claim that I'm too "normal" or "look fine" to be autistic. Thank you for validating all I greatly appreciate it :)
19:27 hit so close to home. Every time I get into an argument with my parents now is because they simply do not understand that I have different needs from them. My father doesn't even acknowledge the fact that I'm disabled. Since I wasn't diagnosed as a child because of my "giftedness" they think I'm using my diagnosis as a getaway for everything related to adult life - while it was the last thing I wanted them to think. It's all the more frustrating that I can't explain it to them properly because I go near nonverbal every time this topic comes up.
The parents of high needs kids should know that the low needs adults have an UNSHAKEABLE sense of justice and increasingly we are speaking up.
EVERY Day we are falling on swords by speaking about neurodiversity even when it puts us at risk. From a psych perspective, our ability to mask our ASD and go undetected means we're more likely to be accepted (thus heard). Additionally, contemporary research suggests that adults w ASD should be seen as experts and shows we often have more accurate and scientific knowledge on it than people in professional fields and that we reject the medical model. We are leveraging this knowledge and unfair bias so that when your kid gets to adulthood MAYBE society will see Neurodivergence differently.
From my perspective, the high numbers L1 ASD getting diagnosed are a very good thing for all people on the spectrum. Imagine an army of Greta Thunbergs fighting for your kid to be seen and to not live our current reality.
Anyway, I also have ADHD so naturally I had to write this immediately before finishing the video so don't be surprised if I reply to my own comment later. Just know we're advocating for your kids. ❤
Being "high functioning" is like another catch-22 of sorts, because you're aware of what the norm is. You know what people expect of each other, and subsequently yourself. You want to fit in, so you work diligently to not be seen as a burden on others. You become self sufficient, you keep your struggles to yourself.
People get used to seeing you fending for yourself, then dismiss you when you say that you need help. But then again, "allistic" people do this to one another... So, what is the difference really? 😔
The even worse part is that they will notice theres something "different" about you but even though they notice they still act like you should act the same as them and like you still should be like a neurotypical and be able to easily do the same things as them .
“There is a specific type of struggle and suffering for people like me, who don't look autistic and who can seem like we have our shit together, when behind closed doors it's really fucking hard to make it seem like that.” Thank you. Thank you for making this video. You’re not alone in your experience. I hear you.
Autistic ADHD woman here. Just want to say that you matter and you're valid. Your needs are valid and shouldn't be disregarded. The illusion you show the world doesn't reflect the pain inside and I feel you on this. Best wishes to all.
Regarding mental health professionals disregarding the judgement of other professionals - when I was questioning if I was autistic, my then-therapist *refused* to even consider it. So I went outside of my insurance to get assessed, since she wasn't helping with it.
Surprise! I was diagnosed autistic by the licensed clinical psychologist with 20 years working with autistic clients.
I took the assessment back to the therapist. I read her the entire diagnostic report verbatim.
When I finished, she said "I don't think you're autistic".
Needless to say, I cut ties with her immediately.
Thankfully, my current therapist is amazing and accepting.
I have a fantasies of creating a community for people like us. A community where we can all support each other with our basic needs and make a society where we can help each other in our own job market. Jobs just within our community and for ourselves. It's all a fantasy though, if I won the lottery, I wish I could do that.
For me it was engineering club. Lol
I would love this, it’s hard to just find people like us, have you ever tried to find neurodivergent people on Tinder?
At least on my location it’s 100 times “nope” for every “hm, maybe”, and I’m not even considering attractiveness or personal preference, it’s usually just “did they write something on their profile?”, “are they able to reflect on themselves, or they just wrote a random quote and called it a day?”
This comment is a placeholder for the hug that I’d like to give you, since your words speak my heart so well, I don’t have a formal diagnosis but I’m on the path to getting one, and I’m not “obvious” so it’s been a struggle.
I don’t understand how people are able to say “no, you aren’t” when they’re not professionals, they don’t know the diagnostic criteria, yet they believe they’re able to decide over someone else’s life or conditions… it baffles me that people have this blind and strong conviction when they are wrong.
It’s like someone tell you “I like the color orange” and they say “no you don’t”. Like… what? Why do you think that? “Oh I’ve seen one person with an orange t-shirt once, and your t-shirt is purple. So you don’t like orange” (????)
"don't feel wanted so you find a way to feel needed"
I guess that's why I told that lady at my Church that "my place in a community is that I have my uses". Outside of being useful, I generally avoid interaction.
Weirdly enough when I got diagnosed (I live in England) they said they would not give me a level. My assessor stated it was something that happens but not often in the U.K! (Not sure how true that is) but I was just diagnosed with autism spectrum disorder. I can’t imagine how hard it must be for you x
I didn’t know I masked so much as a child… I realized it showed so much as a child. I hurt people and didn’t even know but I didn’t know any better because my brain functioned different. My brother showed it more than me and his learning disability showed more so he got more help… I was struggling everyday… I had a hard time learning and socializing with my peers… I thought I was stupid and lazy for not learning well in school because I couldn’t understand what was happening at school. I wish I knew sooner because I would’ve done better at school…. And I totally agree I don’t want to invalidate people who are struggling but why did I have to carry the burden when I was struggling too… I do hope it gets better
the fish metaphor was perfect. i can make it through a day masking and get my work done at my part-time job… as soon as i’m home, it’s a different story. i don’t think anyone realizes how much energy and mental effort it takes to mask every single day. i don’t think they would question it as much if they actually realized that after a day of masking, it can be basically impossible to go home and clean, care for yourself, feed yourself, etc.
it’s exhausting trying to fit into a world made for allistic people when your brain simple cannot function the same way.
My (undiagnosed) autism wants to say "wow, what a well thought out and elegantly demonstrated set of observations you just gave" but my ADHD just says "Holy shit holy shit this is it, this is what I've been trying to explain to people my whole life aaaaaaaaaaahaaah fuuuuuuu-.
But mostly what I want to say is: thank you.
Yes, exactly, about it being unnecessary to cut others down to build one’s self up. Have noticed that people do that; they think rising up is better done by pushing someone down instead of building one’s own self up. It’s crazy.
"...share our struggles instead of invalidation"
I just started doing with another friend, and oh my, the learning and feeling of community is amazing.
Thank you. I have some real difficulty asserting my autistic-ness as someone who learned to mask really well as a kid (albeit traumatically), and who doesn't have an official diagnosis...
I was so good at masking or so I thought, it took me till I was 37 to realize my ways and ability to form bonds with others were seriously lacking. It was the worst for my children. Me needing distance alone time in my room to extremes. Not being able to handle them bouncing and bouncing in my face, the quick movements were overwhelming. My son was almost 18 before I knew I was in the spectrum. I never knew how to form long term steady support of any kind.
On a side note, in my experience, yes people deny the pain or needs even in physical conditions ONLY when they can't see it. So except for people who cares, or are enough solidaric and empathic (not most of people), the rest always need proof, and proof that makes sense to them.
I am undiagnosed and coming up on 50 soon and I find your comments on the struggle of functioning while wired differently incredibly validating. The thing you said about people being unable to hold space for themselves and hold space for others at the same time resonates so deeply with me. Thank you for sharing your journey with me and others. I’m tired and burnt out after 50 years of masking and I am now finally starting to see how I can take my life back. Much love and respect!❤
When people say to me that I dont look autistic I just tell them that I have been involved thetre and acting for 20 years and I know how to act. That shuts them up .
Thank you for this video
It’s a testament to your kindness, strength and sense of justice that despite not feeling like you truly fit in anywhere you’ve created an accepting, nurturing space for others like that. Thank you for all the work you put into this channel! 💪🏻❤
Thank you so much for this Irene ❤
I CANNOT RELATE TO THIS MORE! I AM SO FREAKING GLAD SOMEONE SPOKE ABOUT THIS
i am an aspie, i dont look autistic and i wish that i would either look autistic (so people could know from the start that something is off with me) or just that i would not be autistic at all if i dont look like it.
everyone sees me as a normal person, sometimes its good because i can be independent, sometimes its bad becuase they expect me to do everything, I MEAN EVERYTHING as a normal/neurotypical person and YES LIFE IS FREAKING HARD AS A HIGH FUNCTIONING!!!
Thank you for sharing your thoughts and making content like this. It’s really comforting and helpful. ❤
You brought so much wisdom and perspective here. Thank you so much for sharing this you are so brave to talk about this
I think the algorithm has plugged into my brain because this is something I was thinking of earlier today.
Ive only started calling myself autistic openly & publicly recently, but I've had people insisting that I am "normal" & worrying over nothing for a long time.
I was forced to start masking YOUNG. I remember my mother complaining about how much money she spent on Littlest Pets dolls & how I was "wasting her money" by lining them up in rows by species & set instead of pretend playing with them. I remember being told to play mom with this baby doll my aunt bought me that I hated to spare her feelings. Some of my literal earliest memories are of me being taught or shamed into masking. And now the same people who punished me for being different are insisting I am one of them because I had the ability to fall in line to preserve my sanity?
I have low support needs because the only person who ever provided me any support was myself. I had to learn to mask to survive. And after surviving all that, allistics don't even want me to find community with my people.
Wow! Thank you for putting this struggle in words! I feel it but can't put it in words. ❤
That fish analogy is so useful to describe this kind of experience for "non-autistic looking" autistic people. Feeling like you're suffocating on land but then being rejected from the ocean is a specific kind of awful. Every struggle is valid and just because you don't experience/ understand others' struggles, doesn't mean they aren't valid.
This made me cry. I relate so hard. Throughout this video I imagined my younger self, I feel so sorry for her. Everything she was denied, inside and out, thinking her good wasent good enough, thinking she was dramatic, had high expectations, picky,snobby,rude. Even though that was never my intention. My life is so clear now. I want to thank all the autistic youtubers for helping me in this, feeling heard, and all the hours I spent reading articles. Thank you. Because now I am free
Thank you so much for verbalizing this and giving really helpful analogies! I have such a hard time thinking through all these things because it’s such a sensitive topic and I appreciate your perspective
Just letting you know that you've become my favorite UA-camr in under one months, like Im always so happy to see a video of you on my starting page.
This here is such a comfort place where I just feel so seen and understood.
Thank you for making this, I know its hard, but at least we have each other 🧡
Yes- I have such a hard time with relationships and being around ppl all the time, and grew up in a fundamental religious household, so I felt I was flawed and bad, and when I hit up against these ND struggles I read SO many books, and therapy, and meditation to be better with ppl (bc “relationship is why we were created” teaching) I learned how to bend and break myself with all my masking. People don’t understand ALLL the years of work went into just trying to “human” better to be able to exist in society with the lessened amount of misunderstanding of who I am (it still happens all the time anyway). But I say I have trouble with communication and relationships and I get “but you’re so good with that” It is constant work everyday. And I get get older I can’t mask as much, so ppl are seeing my struggles more. But I also have comorbid mental diagnosis and even tho I know I’m a good person, it’s frustrating to not be seen for who I am.
This literally made me cry, thank you for all these wonderful videos and the work and effort you put into them. Thank you for being a voice we need, you are greatly loved and appreciated by many. Thank you x1000 ❤️
I really enjoyed being with you during your processing. Thank you for sharing. I relate completely to your deep frustration, and your feelings of alienation and invalidation. This invisible struggle is real and I feel you x
I related to this more than anticipated and I’m so grateful to you for making this content. Thank you ❤️
Irene I can relate to this so much. All my life I have been told if I tried harder, if I would just accept this is the way life is, if I would just give more of myself, if I would stop making excuses to not do as everyone else. This was so detrimental to me. I always felt less than, lazy, never good enough, no self esteem and everything else that goes with that. YOU, not realizing it, validate this 39 year old woman in such a positive way.
You have such a beautiful way of thinking! Your insights are such a guiding light. Thank you for sharing!
We totally read the same post- I want so badly for people with more severe autism to get help.. but you do NOT get to talk me my disability isn't bad enough because it isn't as bad as YOURS. You do NOT! Period! So I totally get the hurt. We can't say "I'm autistic" without higher needs people getting hurt and angry, and we can't say "I'm autistic" without allistic people either denying it or bullying us away. Why can't we complain without someone trying to tell me I can't exist and feel pain?? Hell, my autistic brother denies we have the SAME struggles and denies I even AM autistic. I'm sorry I can mask, but we literally have the same experiences and you got the fucking benefit of not being called and attention seeker and getting help quicker because you ARE visible! We are the same level (1), so stop fucking taking your anger out on me when all I did was hide it to escape family and social bullying!
And THEN, when I have a meltdown, I'm called dramatic and people refuse to see it as a meltdown. Ofc there is a horrible thing higher support needs people goes through that I don't experience, but this is a horrible thing they won't experience too.
I feel validated just listening to someone else who shares my experiences. Keep it up. Really enjoy your channel.
You worded this so beautifully. I’m only now getting assessed at 29, after years of feeling quietly doffeeent. So videos like yours really mean a lot 💜🙏
thank you for discussing this topic. Thank you for overcoming your distress to help people to understand the struggle of the less obviously autistic. It seems the more effort an autistic person puts into fitting in with the neurotypicals, the easier it is to ignore their struggle and discomfort.
You are exactly on point. This is what i've been thinking, you are good at saying it out loud.
I've missed watching you, took a break for a while but it's beautiful watching you be so raw, you've truly helped me so much with your words and knowing someone like you exist. Everything in this video validating. From one Audhder to another thank you for being alive and choosing to share your thoughts. It's great seeing you grow since the beginning of your channel.
Sending warmth ☁️🍃🌸🍃☁️
I’m so deeply grateful for this! ❤
Found your channel recently and every video I watch has a huge positive impact on me as an autistic late diagnosed woman. Your work is brilliant and so necessary, it’s life saving, really. Thank you with all my heart, you’re my hero!
You described so in detail on exactly how my life has been/how life is for me, like in the core of my struggles, the different situations, the feelings they cause and why. I'm so sorry we share these struggles together 💔❤️
I got teary eyed towards the end. Thank you for leaning into courage and bravely speaking your truth. It feels validating to hear another person has struggles within community spaces, too. I felt less alone and enjoyed hearing your message that we must support each other, not divide. ❤️