For us who need less support, often the only support we even get is peer support and videos like yours. Many of us aren't even diagnosed without us recognising ourselves in the videos first.
When i was diagnosed i didnt react. The doctor was like what are you feeling? My reaction: are you sure? I was so gaslit my entire life it took me awhile to realize i was acknowledged.
I am only pursuing a diagnosis now, at 44 years old, for AuDHD because of RUclips Shorts videos. I started getting ADHD experience videos that I found interesting, but only slightly resonated with me, then came the adults with autism videos that resonated strongly. Eventually I found some people with AuDHD making content and it was like seeing my entire life explained to me. Videos like this I've have literally made me feel heard and understood for the first time in my life. I have some answers to the "why am I so..." questions. I'm only seeking a diagnosis because I have a high need for information and confirmation, I am very low support needs, I'd love assistance, but I'm mostly capable of taking care of myself. If I can have a diagnosis confirmed it will help me explain myself to others in a more concrete way, or so I hope anyway.
@@PeculiarGirlKelly I'm a year older. I have some professionals thinking I should absolutely get diagnosed, but those that could refer me to the process are gaslighting. Or then just simply saying "you may be, but you don't need the formal diagnosis for anything, we're saving resources". (Despite that making me vulnerable to gaslighting by other professionals.) So, self-diagnosis and self-help it is.
@@MiljaHahto That is so frustrating, and a story I've heard from many people, so far the people I've worked with have been seemingly open. It probably helps that I'm allowed to self refer through my company's EAP plan. I have largely avoided therapy, as for me it's not been super helpful and often is actually damaging to my mental state. Can you choose your doctor where you are? If so maybe it's time to try someone new.
I saw a really good analogy on TikTok today: Everyone is a little bit autistic just like everyone is a little bit pregnant. You can have morning sickness and not be pregnant just like you can have anxiety and not be autistic. So unless you want people to start saying you’re a little bit pregnant when you’re ill, then stop saying everyone is a little autistic. And I LOVED it 💯 Sending you all of the love and good vibes, Taylor 🫶🏼
I think of it like traits vs clinical diagnosis. With it being a spectrum, what exactly is the tipping point that justifies a diagnosis? A diagnosis is made to identify an illness or injury, but this spectrum does enter into some debate over whether benign personality traits should be included as an illness worth diagnosing in order to get some kind of treatment. Some aspects of autism can require something to relieve the person, such as help with sensory issues for example. There should be more discussion about who exactly needs modifications when a society can't cope with benign personality traits of someone not coping with what can often be described as a toxic environment, situation, or societal norms. Everyone might have a trait in common here or there, so what is the goal in diagnostics? It has to do with who simply isn't coping well. Societal norms do include the "song and dance" facade mentality. What they're basically saying is that pretentiousness has been accepted as a standard, but not even nt people are actually coping or happy with it either, so that's a lie. They just don't know how else to be or get by in a society that requires a certain level of pretentiousness to make a living, or survive. For millennia people have had to navigate a social environment that includes predators for instance. Something I've noticed is how vulnerable autistic people would be to someone with a predator lean that lacks empathy, and how difficult it is to recognise them. Predatory people are very good at using the systemic pretentiousness to go incognito and manipulate others into believing they are the problem instead to cast off doubts about their own character. Autistic people are often very good at turning inward into their inner world, and are very prone to internalizing any toxicity around them. What I often don't see autistic people very good at is knowing what to do with it before it's there, let alone after it gets internalized. Sometimes the problem isn't actually you. Sometimes benign personality traits becoming diagnostic criteria has put the attention in the wrong place, because they aren't the problem. When difficulty coping is in some way censored, it can lead to wondering what we've done wrong, but we haven't done anything wrong, and the call for attention could inadvertently bring attention where someone doesn't want it, so we experience censorship and it doesn't make sense to us why. I say "us" but I can't be sure it's only autistic people, so I mean anyone could wonder why. Anyone could be gaslit for example, and how would they know the reason why things are like that? While I feel strongly this needs to be a conversation (no doubt had with some soothing cuppas or something), the priority and goal in my perspective is that people can be safer. Unmasking where a problem might actually be can be very dangerous in some situations, so while it's good to be heard and get to problem-solving as a simple and straightforward task, there's a need to be careful too, and just do the best one can to get to the other side of a difficult moment. Ideally a person wouldn't need a diagnosis or label to simply be treated with dignity and respect as a human being in a diverse society. Too many people would fall through the cracks of not getting approval by having a medical note. For anyone undiagnosed, they also deserve to be treated humanely with their uniqueness in mind. We just don't know others like we can know ourselves. Maybe there really are many on the spectrum without a diagnosis, and so have to assume they're "neurotypical". If you see someone who comes across as nt, they might even be masking. How do you know every time? And do people with a diagnosis owe everyone else an explanation of why they're unique? Are they obliged to have a sticker on them saying they're autistic? I would hope not. If someone is willing to share, it's great as a choice. It tends to mean that's when they really need to be heard. Instead of telling someone to stop saying something, maybe in some way they need to be heard too, and maybe it doesn't actually invalidate anyone in the process.
My go-to analogy of saying "everyone is a little autistic" to an autistic person is a lot like an average NT choosing to compete in a professional Field & Track competition, losing in every single event, and then proceeding to go to a paraplegic individual and saying "I totally know how you feel being handicapped."
I used to believe my voice wasn't heard by many people but as I've gotten older I've realized that sometimes, the "right" people or the people who really matter to me and what I'm saying actually hear me. I think those that don't hear me will never truly understand me or care about what I'm saying. My world gets smaller every time I encounter those situations but it's comforting in that my words are being heard by people who care about me.
I think adults were supposed to be able to pay attention to anything without the need for histrionics, I think once again the normies have part of the blame on this.
Yes, it’s been absolutely unbelievable how misdirected, misguided, misunderstood. These incredible videos are truly helping me understand and help the real me. Thank you so much. ☀️
As a neurodivergent mom of 3 autistic kids, I wonder if sometimes the person who hears you and gets credit for the thought is actually just translating your words for the group, whether they realize it or not. I've been told we say things differently from other people, and I feel like I've been "translating" my kids for teachers and relatives for their entire lives
The real autistic community knows how we all struggle. We know we all struggle in different ways. Anyone that has an issue with our spectrum doesnt understand us yet.
I have a stronger sense of justice and ethics than most around me. The narc says, this is illegal or wrong to the rules, but others see it as excuse or threat and distance from me. But many employers don't want whistleblowing, they prefer boeing response. Twice. So I get fired not supported Narcs are whistleblowers.
It can trigger me when people misinterpret my motivations especially when I am trying so hard to be helpful. Sir Anthony Hopkins quote is almost a daily mantra, "It's none of my business what people say of me, and think of me. I am what I am, I do what I do. I expect nothing, and accept everything. And it makes life so much easier." Wish you and your daughter peace in finding a solution for school.
@@MomontheSpectrum Your videos have been immensely useful to me in giving space and quiet understanding to the ASD people that I know. Anthony Hopkin's statement comes right out of Alcoholics Anonymous, where dual/compound diagnoses are rife among us, with health complications related to stress. I have passed links to your channel
The more I'm able to "expect nothing, and accept everything" the more I'm free to live in the present moment. It's life changing. Thanks for this quote! 💖
He was RICH. He didn't have to kow-tow to bosses, judgement and derision. The rest of us have to care what others think - our bosses, co-workers, church comrades, club members and in any social context. I am autistic and I have spent my life masking and dumbing myself down just to get by. NO boss wants an employee to be smarter or more creative than he is. NO group wants an ODDBALL who is in anyway different. The motto of the proletariat is "Fit In Or F*ck Off."
I’ve had people walk away from me mid sentence when I was talking. It’s humiliating. And you don’t have to constantly qualify or edit yourself. We know that you aren’t speaking for everyone. But I also know that We’re all so afraid of stepping in the verbal minefields that we tiptoe through the English language to avoid attacks. I understood you perfectly.
I once has a situation where I was standing talking to someone - and another person came and stood BETWEEN us with their back to me, right in front of me, and started talking to the person instead!! What is that?! 😟 And the person I was originally talking to did nothing about it, they just accepted the new conversation and ignored me, too. 😕 Why do people think it's okay to be abominably rude to us? WHY??? 😢
Expressing oneself with a simple, clear, concise sentence and not being heard is so frustrating. We have been speaking since 70,000 years. We have been writing for a few thousands of years. We have literature, philosophy, history, science. We have killed each other over written words. You'd assume words have power. So why is it, that the sentence: "Please help me, I've got a serious problem", can only be understood if while saying it you also cry, make faces, beat your chest, jump up and down, pull your hair and scream and shout? If words mean so little, why haven't we stayed on the trees?
Thank you for wording this feeling of dispare so apt. It made me feel heard, and I didn't even speak. I hear you, I see you. Your words have reached me.
@@lucinevertanes9564Indeed. My experience is that when we speak calmly, logically, clearly about difficulties they're either dismissed as minor or our requests for support are ignored or denied because we look as if we're 'coping well'. However, if we break down and either become loud and angry or weep and wail in distress and despair, we're accused of being aggressive, hysterical, overly dramatic, irrational, and so on. In such cases we're either denied support altogether due to 'antisocial behaviour' or told to go away and calm down and come back when we can be calm and rational - *sigh*.
@lucinevertanes9564 exactly my thought...when we DO react strongly, someone assumes we are being problematic, not that we have a problem and need help. Catch 22.
I'm also considered "high functioning" and I hate it because people don't understand how much I struggle every single day. My whole life I've felt like a ghost because it seems like no one really listens to me, until, unfortunately, I'm brought to the point where I'm having a meltdown. It's exhausting.
Yes. This. I have TBI as well from a massive surgery and I always say just because I don’t have crutches doesn’t mean I’m not broken. But people won’t ever be able to comprehend that.
I often feel out of place in the autism community. I wear two hats. I'm a late diagnosed autistic woman and I'm a parent to an autistic child with high support needs, who is also nonspeaking. I think the autism community is fractured, and that's very unfortunate. I think when people say that lower support needs people are talking over those with higher support needs people, it comes from a place of frustration and pain. I can say that I do not receive enough support to take care of a child with a disability. We don't get enough financial help, respite, and emotional support for what we are expected to deal with on a day to day basis. We are tapped out and tired, expected to do it again the next day. I think parents like me see other lower support needs autistics online and may even be jealous because our kids aren't able to do that yet or maybe ever. I think there's fear involved, too. Fear that those being listened to will be those with spoken language and the nonspeakers will be neglected and they rely on others when we are no longer here. I think all you can do is listen and support those with different support levels because we can all learn from another. Even though I feel out of place in some groups within the autism community, I've never felt that way here. Thanks for being vulnerable! 💞
As I'm reading your comment, I'm connecting how this really relates to how I feel with the school situation - I feel like I have to communicate the loudest to be heard. And maybe with higher support needs it can feel overwhelming bc the communication abilities are very different... and it is probably very frustrating to feel like maybe sometimes your voice is drowned out or trampled on by others who seem to be able to "speak up"... I hope this isn't putting words in your mouth. Just starting to see that maybe we are both feeling similar in different ways. 🫶 Thank you for sharing your perspective. I can hear that you're feeling less than supported and exhausted. That is an overwhelming feeling.
Taylor, idea for exploration. Is there space on your channel to interview Whitney about their experience and their kid's experience to provide more insight and visibility into higher support need experience. Also, don't stop what you're doing - it's so great!
I have a high support needs disabled child as well, and though I believe he shows many autistic traits, he will never be diagnosed. He has a tbi diagnosis, so doctors will not diagnose him with anything else neurodevelopmental or the like as they have no way to know which came first. I, however, have been recommended for testing and go later this year. After what I have learned about autism, I now understand everything about myself and my life in a way I never was able to before. That said, I was a low support needs adult raising a disabled child by myself as a single mom. I understand exactly what you are talking about! It is like pulling teeth to get any help in certain areas of the country I live in. What did I do? I moved us to a state that would help me and my son. Now that he has the support he needs, we can both start to heal and breathe. I love my son more than anything, but I want to be able to be around for as long as I can, which means finally taking care of my needs as well. If you don't have the help you need, I promise help is out there. It might just not be where you are looking for it. And it might take looking in or moving to a different place to find that help. You are not alone. Don't forget to take care of you 🫶
I'm 74..... just diagnosed 2yrs ago. I love your videos. So much of what you've gone through has helped me make sense of my life. I've gone through my whole life feeling not heard, misunderstood, and like everyone else has figured everything out, so why can't I? Your videos help me so much more than I could ever say. Thanks for doing this. ❤
wow! i just got diagnosed a couple of months ago at the age of 50, and i thought that was hard... i'm sending you a BIIIIG...whatever it is you find most comforting (i was gonna say "hug" but some autistic people really hate that, so i let you choose). ❤
I can’t count the times I’ve said something or had an idea I put out there then it’s rejected or ignored and literally a few minutes later someone else will say the same thing and the group goes wild. I’m I’m just there. I’ve called it the middle child syndrome. Invisible.
When I get the comment, "everybody's a little autistic" or "we're all on the spectrum somehow, " ... I will stop that line and say that actually if they look at your brain and my autistic brain, they can see and point out the biological differences. It felt good to say it and I look forward to saying it again when someone says it to me again.
I'm OK with "we're all on the spectrum" As long as people realise a spectrum has ends - and starts at zero or "not". Most people are on the "NOT AUTISTIC AT ALL" end of the spectrum.
Another thing about the spectrum is - most people who say “we’re all on the spectrum somehow” tend to view “the spectrum” as a one-dimensional line with “not autistic” on one end and “extremely autistic” on the other end. That’s not a spectrum. That’s a line. “The spectrum” is more like two things people will relate to better - rainbows, for most people, and for more techie or musical types, a graphic equalizer. “The spectrum” is composed of many different individual one-dimensional lines all combined together. Being “a little autistic” or “on the spectrum somehow” means that you show up on a couple of those dimensions - usually a little bit. Being autistic means showing up significantly on many or most of all of those one-dimensional lines or bands all at the same time, all the time, every second of every day, more or less since we were born, and with no real deviation from that state from that point until we die. Autistic people don’t get a vacation from our being on the spectrum and showing up significantly on most of those lines all at once. It isn’t something that “shows up once in a while” when we’re having a bad day or whatever. It’s something we’re dealing with 100% of our lives, constantly, unrelentingly. For us, a good day just means those things aren’t interfering as much as they usually do, but we’re still having to deal with them and compensate for them even on our best days. It’s still taking its toll and wearing us out, it’s not as if it isn’t there or we don’t even notice it. Anyway, that’s probably enough to explain another point of view for what being “on the spectrum” really looks like vs. how neurotypical people tend to view being “on the spectrum”.
I told someone that about Autism and ADHD. She said that thats just normal, I do that. I said "actually they have proven that autistic and adhd brains are physically very different" She replied "I don't belive in Conventional medicine so cannot believe the bullshit they make up"
This hit the mark. All my life I've felt like I wasn't seen or heard because I wasn't "on fire", even though I WAS on the inside, but everyone else's "emergency" was more important, and I couldn't and didn't want to be the way all those other people were - rude, self-centered, obnoxious...it seemed so easy for everyone else, but I couldn't be like them even if I had wanted to. So I bled, silently, internally...until there was nothing left. I learned to ask for nothing, to want nothing, to need nothing, to be invisible - and became less, everything inside slowly erased, washed away in the flood of emotional incontinence all around me of all those who demanded so much and valued nothing, especially not the quiet, patient voice of reason that couldn't shout immediately enough or loudly enough to be heard over the mob. Even now, if I speak up to be heard or object to being ignored or mistreated, I'm the one accused of being rude, anti-social, selfish, or "unempathetic"- it seems that if you're different and dare to have a voice, the reward will be a marshmallow toasting in your honor, and the bitter taste of ashes.
If you don’t mind, I would like to journal this comment word for word? I’m at work and almost burst into tears; it left like you wrote this from my very own soul… thank you so much for this ❤
@@potatuhtot5125 You are welcome, and welcome to journal it until there's no more ink if feeling it flow onto the page from your own hand helps you - I truly hope it does, from one soul to another. 🙏🕊🤗
@@augiespicer1270 thank you for the kind compliment - it's my way of growing fresh feathers and trying to rise from the ashes, in hopes of using my quill to inspire others to transform into the Phoenix that burns inside them. If you have to burn, burn bright, be a light in the dark for others, and perhaps teach humanity something about the destructive dangers and unnecessary suffering caused by playing with matches. I'm sorry that you have cause to relate to my words, but I hope they help you not feel so estranged. 🙏🕊
I'm a 44 years old, late diagnosed with ASD-Level 1and father of two, my son is autistic, too. I love your content and your channel and the "unedited" version of you is even better. Greetings from Germany.
Very similar situation to yours, diagnosed at 45 out of the blue, two beautiful kids, I don't know if they are ASD, maybe the elder but "high functioning". For my all life I felt "strange", often wrong, clearly a small minority. Greetings from Italy. I feel in Europa we are very late compared to US, Canada or Australia in talking and accepting a less pathological vision of ASD.
Hi! I'm considering moving to Germany. What is the situation with mental health providers? Is it possible to access evaluation (for at least Adhd) for English speakers? Maybe in private clinics? I would appreciate any input.
I'm an American living in Australia the past 20 years; just diagnosed with ADHD-inattentive and ASD-Level 1 last year at 41. My mother completely rejected the news of my diagnosis, largely because she doesn't care to learn new information, and she thought I was perfect, she still argues with me about it if I mention it, so even more masking now required to be in touch with her. 🙄🙄🙄 What's the actual point of anything? I forget regularly.
Your representation matters. For a long time the only representation we've had are people with higher support needs. That leads to many people not understanding that they are autistic, not getting diagnosed and dealing with internalized ableism. People need examples of all kinds of autism so they can have a rounder idea of what it means to be autistic. You are helping people (like me) figure out that they are autistic. I feel your pain in trying to communicate because I deal with it too. I just went to an IEP meeting and I was told to email the principal to advocate for full support for my child. I don't know how to write that email.
This is just a small piece in a big, difficult puzzle, but it helped me recently so I'll pass it on. Chatgpt (free AI website) answers questions very clearly. If I'm not sure how to do something (especially if I can't phrase my confusion in a "google-friendly" format), I just type the word salad into chatgpt and it usually gives a pretty good answer. I recently needed to email an academic asking a question and I was unsure how to greet him, what elements to include and leave out of the email, how to approach a question that could imply that he's wrong, etc. I outlined my intention and my question then asked "how do I write an email about this to the author of the article?" and it spat out a generic template. I still change the wording and add my own sections, but it gives me a rough idea of what people are expecting. I also find it helpful for really broad/vague/niche questions like "how do I figure out what community organizing is occuring in a specific zip code". It's not 100% perfect but it usually acts like a person who's involved in the area you have a question about, which can be really helpful.
This is so relatable. I feel like when something is emotionally charged I get quieter and more even toned at first in an attempt to not be overly emotional because then people will see me as being dramatic and I won't be taken seriously. But because I sound more calm no one really listens, so I end up asking for support over and over until I'm at the breaking point and then I have a meltdown and everyone listens, but the whole point is that I was trying to avoid the meltdown by asking for support before it happened but no one takes me seriously until it's too late.😔
Whenever I have a migraine everyone will walk on eggshells around me and suddenly be careful about loud noises and triggers. I think it clicked with some people in my family that the way they are so kind and considerate during a migraine is about what I need for my alone time. Usually they don't think about alone time as something crucial.
My brother remembers probably the most Autistic thing I ever said, "I like people, I just don't know what to do with them." I Dow remember saying it but that is me in a nutshell.
25:11 I am absolutely on the same page that higher support needs autistics need their voices to be amplified and not drowned out. AND I have never heard this much conversation about autism in general and high support needs struggles in particular, ever before - so I’m confused as to why people keep claiming “autism popularity” is so harmful.
Yes. Invisibility. It must have something to do with that "uncanny valley," the flat effect that we have no consciousness of giving off but is, apparently, there. There's like this profoundly sub-SUB-conscious thing that seems to be going on among everybody else, where they've agreed, without even knowing they've agreed, that you're effectively not there. And when you do GRAB the attention in the midst of that group-thing going on, at just the strategic lull you've been waiting for where they have no choice but to give you a listen, you very quickly register that they're being...patient. Which is soul-shrinking. And then you really don't even want to talk anymore and there's nobody in the room dying for you to finish saying it than you are yourself. Funny thing is, I feel so free being alone because there is neither a duty nor a need to put in my own two cents, to join the "dance," to negotiate the dynamics. I don't need to feel like either a slouch failing to hold up my end of the conversation OR the unwelcome intruder. One does actually learn to embrace and love anonymity most of the time, it's such a freedom. Yet there are moments and places where you, like everybody, simply must make your point heard. There is a bizarre corollary to this, however. I am definitely an outsider in group dynamics, yet at the same time I can be called on at any moment to "perform," to come up with some amusing joke or recollection or, interestingly, a memory that nobody else manages to dredge up. I go along in the best humor I can yet I can't help feeling inside like something of a trained monkey called on to do a trick. In so, so many group situations in my life that's how I've felt, like Mr. Not There until the moment comes for "Ken, do something funny the way you do!" Is it any surprise my profoundest peace is in living alone. There are very VERY few people in the world where I feel safe to be both freely quiet when I need to be and freely conversational when I need to be, and like I'm never an object of perplexed, uncomfortable curiosity.
Thank you so much for sharing this, your descriptions are so much to the point: "...you quickly register that they are being patient, which is soul-shrinking". And then being acknowledged for behaving in a way that feels like a trained monkey. This is put beautifully and those may be helpful images for my people to understand...at least I might try. Thanks again!
A huge one for us is co-occurrence of hyper mobility and the pain that can cause and again no treatment just taking care of yourself. It’s just that our acceptable level stress is different so things that don’t seem that big a deal but you have to remind the doctor you are also autistic and dealing with that every day even though you don’t seem “that autistic”
Thank you for showing your real self. I'm 43 and just learning that I'm autistic. Content creators on RUclips have been really helpful in helping me see myself in the mirror of ya'll. Actually, I think it was *your* video on how autism presents in females that was the light bulb 💡 moment. I congratulate you on the edited videos -- professional, helpful, welcoming. And I THANK YOU for this real moment. This week has been huge for me, with my autistic traits ringing alarm bells at me. Seeing others in their realness is so validating.
I realised only this year after late diag @ 56 i have spent my whole life full of cortisol and in a constant state of hypervigilance. I really appreciate your videos!!!
Just because other people don't understand what I need, or why I need something doesn't mean I don't need it! Being forced to go without effective support for 40+ years has NOT "made me stronger" or diminished my need(S) in any way. It's actually quite the opposite, I am 45 next week & it's so bad right now! Omg, I can barely function at all. I watch your videos & usually all I can do is cry. But oddly enough, that does seem to be helping me. Anyway, Thank You for all that you share. I'm very grateful. to have found your channel & to you for how much you share. ♡hugs♡
Omg, this is a huge trigger for me. I can remember a few times someone actually made a point to let the teacher know I had said the answer first to a question she asked, after someone else had took credit for it. I had such respect for them after that.
HELP. Is there anyone willing to show Soldarity with disabled people and just straightup REPORT someone who has only cruelty to spare for disabled folks?
I relate to this so much. Especially the feeling of not being heard. I think I coped by communicating in a way where I over explain myself with the automatic assumption that people will not understand. Then this also is a problem. I struggle getting to the point. Yet if I am blunt and to the point everyone is offended.
Thank you for being real, Taylor. Sending you lots of love and healing energy. It is so annoying when the people who are always heard are the ones who shout the loudest, i resonate with this a lot, and I've found myself in many situations where this has been the case. It's made me feel vulnerable and less than. I hate conflict and struggle with confrontation 🙈 At the same time, i never want to be that person who shouts the loudest because they can appear very ugly, although it would be nice to be heard. i love this quote...."For beautiful eyes, look for the beauty in others, for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone." - Audrey Hepburn.
Thank you for this wonderfully insightful, true, brave and caring video as ever. I truly resonate with this on a deep level. For me it has always been so difficult to speak up and get attention, and I am simply unable to react with the high energy many people do, even if I often wish I could. And that leads to a lot of internal pain because nobody can see it or takes it seriously because I say it in a calm way, and often end up not saying anything because I feel people don’t listen anyways. It happened when my mom died when I was 16, it happens all the time with the therapists (like you say, how should an emergency be expressed, what is an emergency?), it even happens at home and with my work colleagues. I can be suffering a lot, but nobody knows. And if I ever explode because of the pure exhaustion of wanting to be heard, people around me get horrified. So I thank you truly for these videos, they are incredibly helpful for the people on the spectrum that share these experiences. Maybe it’s a pity that we have to share the same “label” between people with such hugely different support needs, but I think nonetheless it’s crucial that also people with low support needs can get help, support and understanding and a sense of connection. I believe for many, exactly with this silent suffering as a core reason to all of it, sharing our expreciences openly can be life saving. At least for me the identification as autistic has prevented me from madness, and maybe I don’t need support in my daily life, but if I hadn’t been able to identify as autistic through all these informations that you and other fantastic people are bravely sharing at the cost of being criticised, maybe I would have ended up loosing my job, loosing my family, and perhaps ended up actually needing a lot of the daily support that we are talking about. Therefore still, I think it’s a crucial and incredibly valuable work that you and others are doing, helping the community as a whole. It will be nice the day that modern psychology evolves to the point where we will have more words and concepts to express more of the different experiences on the spectrum, where everybody will have a place to be recognized and supported, but until then, we probably all need to share this space and try to get the best out of it for everyone.
Re: 10:25, I watched the film about newscaster Christine Chubbuck earlier this week and noted afterwards that, as a late diagnosed autistic (AuDHD) person, every day of my life feels fatally disrupted, in large part because the rest of the world doesn't understand how unrelatably dysfunctional it is to an autistic person. It's great that we autistics can learn about our condition and support each other more thanks to the internet but the conventional neurotypical world still isn't meeting our needs nearly enough for us to be part of "their" society.
HELP. Is there anyone willing to show Soldarity with disabled people and just straightup REPORT someone who has only cruelty to spare for disabled folks?
@@slevinchannel7589 While I appreciate your engagement it's not me that needs an explanation; as the film demonstrates, the onus is on neurotypical society to acknowledge, understand, accept, and accommodate neurodivergence.
@@slevinchannel7589 I think my understanding of my own argument is sound. By contrast your concern is only tangentially related so its introduction here is unlikely to receive any productive acknowledgement.
I joined your Circle group last week and it is the first autistic group I’ve ever given myself permission to join and I can’t thank you and the community you have on there enough for the support and the help they have been for me in just this past week. I am also very much a silent struggler and I feel like I’m finally beginning to have a voice somewhere and it’s a really emotional and beautiful thing to experience. So thank you, Taylor, for opening that space to all of us and allowing me the opportunity to have a voice as an openly autistic person in an authentic way for the first time in my life. I can’t express or explain my gratitude or how genuinely life changing it has been for me enough. Thank you for giving me the space to feel heard for the first time in my life.
I relate to a lot of your experiences, and so many more. I am also female, late diagnosed ASD-Level 1. -being valued and listened to. -not showing the expected emotions. I struggle with feeling lonely or left out. And I really enjoy when someone is actually listening to me instead of treating me like an annoyance. I am glad you are real and have this podcast that our "subtype" can learn from and relate to! Thank you!
I hear you, and I see you. You have put into words those thoughts that I've had myself, scattered and unstrung, and which have only recently hung together just so.Thanks for putting yourself out there to model the sense of normalcy we all need. I want to reach back and assure you the way you've done it for us: it's real, it sucks, it's scary in new and unsettling ways. And though we pick up skills and confidence, we also know that there will always be ways for this to repeat the way or another. I'm on the downslope these days, a little like you are, so I'm glad I saw this at the moment I did, it's what I've needed lately without knowing it. I'm sending you hugs, or whatever it is that comforts you. And back into the breach we go...
I had to pause to write this down: The "why" behind your stories seems pretty clear to me: we blend in. We've learned through blood, sweat, and tears over our formative years (especially for the late-diagnosed crowd) that blending in = survival. Sticking out = suffering. We've trained ourselves to the point where it's automatic - blend in or face the consequences. No wonder we can't get our needs out into the open in a way other people understand; that would mean standing out, and that muscle atrophied looong ago. It turns out that neurotypical people are able to bounce back and forth between blending in and standing out - some are even blissfully unaware that this gradient even exists! They just do what they do and it all works out. For us, it's a manual choice. Unfortunately, when the choice is between the indomitable strength of blending in or the wispy wrinkle of standing out, we're going to go for what's worked throughout our whole life 100/100 times. Edit: yup I think that was it
Thank you for sharing! I cried through most of this video because not being heard hits so close to home for me. Whether it's being constantly talked over by others, or not being taken seriously at the doctors office, etc, it seems like unless I put on a big show/mask heavily, my words fall on deaf ears. At times, I feel like I am just bothering those around me when I need support, as they are so busy with their lives (which I totally understand, because I can be that way as well) and tend to just stay quiet. It can be a lonely place and I remind myself that the only one that can really help me is me, but that can be sketchy AF haha! I have been doing some inner-child work over the years, and try to "re-parent" myself where I can, which helps some, but lots of things are still a struggle (we don't know what we don't know after all!). As I learn about ASD/ADHD and go through the diagnosis process, it helps to know I am really not alone in this beautiful messy existence. 🥰
As a child I was alone, didn't know how to make contact with other children, my mother had to force me. Felt different. Terrified of loud noises and large objects. I screamed and covered my ears and eyes. Hated going to the toilet resulting in "accidents". As an adult, I find it hard to make friends, get burned out at all workplaces, can't handle loud noises and smells, avoid social events and if I have to participate I fake a different personality. I hate the social game and small talk, don´t understand It, feel scared of people, but I have developed an ability to participate. I have strict routines that I don't deviate from, I can't spend time with someone who is unpredictable. Extremely hard to learn new things, I feel stupid. I play roles in all contexts except with my partner, he thinks I'm complicated and odd, but he understands.. I love spending time alone or with my cat. I have a vivid imagination and read a lot, love to learn about airplanes. I smell scents like no one else does, I hate clothes against my skin and the list goes on and on.. I don't have a diagnosis, I´m 43 years old💡
I'm late diagnosed autistic and ADHD in my early 40s with hyper-empathy and hypersensitivity, and I experience all of this and more, too. I was in the learning development program in elementary school. Never told I was autistic but how the fuck did my parents not notice?! My sister was in gifted program but I was non-verbal. My birth mother and father were born autistic and ADHD. But my sister was higher functioning ASD. I had to be speech therapy. Also, PMDD is 90% for autistic girls and women. My oldest oldest started puberty early and so did my sister.
@@Selene_Antonia Thanks for the reply. It feels good to know that there are others like me. Although of course I don't want others to have to struggle like that with life. My parents probably noticed that I was different as my sister was completely "normal". I didn't know PMDD was so common among autistics. thanks for the information🙏
I lived a full book worthy life, trust me !! I’m glad I’m old though. My life is so calm, so simple, so blissfully MY OWN !! Do I isolate like a motherfucker ?? Yes I do !! But I get out in the world and interact with others 3 days a week or more. The rest is quiet time just for me. The STRUGGLES !!! They’re finished, thank god. I never have to worry about trying to work again, I’m on Social Security now. I’m just chilling and LOVING it.
Yes to so many things in this video. I have crohn's and chronic migraines. Completely hidden illnesses that affect my every single day. Yes, to not being able to emote in a way that will make people understand. For the most part, excited, mad, happy, calm, sad, all looks and sounds the same. You have to reaaally know me to be able to tell what I'm feeling (shout out to my husband). YES, to trying to help my daughter navigate social situations when I don't know how to navigate them myself. Trying to balance her emotions, my emotions, what happened, her perceptions of what happened, and what the right response is. It's. Exhausting. And I feel so lacking so much of the time. "I do really struggle. But a lot of times it's a quiet struggle." That. That hit deep. Yes.
I haven't watched a ton of videos on autism, but once I started, the ball dropped. Not diagnosed (thinking about talking to the doc though), but on reflection I see this is what I've been struggling with all my life. This video is one of the most valuable videos **on any topic** that I've ever watched on RUclips❤❤❤❤ PS I've sometimes been unheard, and definitely sometimes been unseen - I was standing in a circle with other adult students after a night-school class, and they were all chit-chatting amongst each other (which for me is immediately alien territory). I chimed in in the discussion and literally people jumped like "where the hell did she come from??" It was a strange moment. I will never forget it. Your daughter is lucky to have you as a mother. I'm from the generation where "adults are adults and children are children, and never the twain shall meet." I had lovely parents, but it was just different times. I had weird s~~t go on at school or in my life but, it would never have occurred to me to talk to my parents.
Thank you for continuing to unmask in front of us all. You're one of the bravest people I've encountered on youtube. So Real. I hear you. I am you. I support you. 🙏🏼💓🌈
This is what set us on the road to homeschool. When my eldest was 3yo he attended a preschool 5 hours a week. He was undiagnosed and the other kids were bullying him. When I tried to advocate for him, the teacher said “this is how he will learn”. I saw then that I would be forever having to set myself on fire to advocate for my kids for the rest of their time in the school system. And I knew I couldn’t do that for the next 18ish years. And so homeschool was a proactive way of creating a safe environment for my kids, rather than have to react and fight the battles that would come..
Thank you, thank you, thank you. One part specially hit home. As a child I was constantly wondering how the other children knew the right thing to say in a situation. I was like, "How did they do that?!" Again, thank you. You make a difference.
Amy Grant has a song that I felt so deeply as a child. It starts out, “Some people always know the right thing to say, I don’t really think I was born that way. And with the gift of charm they’re well endowed, I love to watch them float right through a crowd.” YUP!
Thanks for your openness and sharing. Self diagnosed here, 47, just, learning, doing, and dealing with life. I felt and got a lot of what you noted here and I've been going through so much the last year, especially the last few months. Hmm, maybe it's demand avoidance that kept me from joining the community earlier (haha, 'Don't tell me what to do! You're not the boss of me! : D), but I've joined today and look forward to contributing, sharing, and growing with you and everyone else in the group when the giving and sharing is open and available. Thanks, Taylor, for everything you're doing and sharing. You've already helped me think, laugh, cry, and understand what the heck this crazy world, including our individual place is in it is all about and how to better travel through it! Oh, you mentioned you're a Cancer, nice, the most emotional / empathic of the zodiac in my, and my teacher's book. I'm an Aries and I have a, hmm, let's say journeyman understanding and respect for Astrology. That's me, all A's: Adam Austin, Aries, Astrologer, Autistic, Anarchist, Author, (Artist) living in Arizona =)
Thanks for this. Despite being a dude, the labor story was super relatable. So difficult to get taken seriously until its too late or almost too late. Nearly died of heart issues because people around me acted as if i just had a cold.
Yikes, that is scary. Maybe we need an emergency whistle or something. I would hate to blow the whistle, though, because my words would almost certainly fly away when I actually did get attention.
THIS. yes, I so relate. One story among countless stands out in my mind. I was on a team & we were doing an obstacle course race type thing - there were multiple teams & we were all completing different challenges & tasks, which also involved hiking & such. There was one challenge where you had to light a fire & the fire had to get tall enough to be able to burn the twine above. All the team members on my team were scrambling, raising voices, demanding to try it their way. I kept trying to voice that I really felt like I could do it & I wanted to try. But I wasn't as loud as them & wasn't as demanding as they were. After four failed attempts to have them let me give it a try, I gave up. Finally, they all gave up. They all kinda backed away & I said "okay, now I would like to have a turn." Literally, within a matter of a minute, I had the fire lit. I knew I was able to do it & I did it. No one said a word... they all just scrambled back towards the flame, no longer room for me, & they tried to coax the flame higher & higher. No one said thank you. No one even acknowledged the part I played. It was almost as if I wasn't even there. Still to this day, all these years later, I can remember how that felt. It's a feeling I've felt countless times in all sorts of situations, all throughout my life. There's tension in being thankful I'm not alone & also hating that there are others who know very well what that feels like.
I know exactly what you are talking about! I've been in group classes where the instructor gives a task and everyone works alone. I'm the first to complete the task, but the instructor never notices. Just walks around and announces and congratulations every single person in the class as they finish... EXCEPT ME! As I've gotten older I've started announcing myself when no one notices. I might say "Hey, I did it!!! YAY ME!" Then everyone thinks I'm just really weird...
Taylor, totally relate to everything you say. Thanks so much for everything you share. Diagnosed at 62 last year, a host of autoimmune illnesses, recurrent infections, gastro issues and food sensitivities since childhood (T1D, M.E., Fibro, shingles, heart arrhythmias etc). Periodic health crashes which now looking back seem suspiciously like repeated autistic burnouts. The delayed processing, the not being heard, the gaslighting and minimising own needs - thank you for being vulnerable and voicing struggles so many of us face daily and reminding us we're not alone. ❤
Now we're talking, Tay. As many unedited, raw talks as you are inspired to do are very appreciated. And your new plan for scheduling your classes is just great. And your passion/enthusiasm comes through without the over-the-top "RUclips Song & Dance." Trust it. Also your autistic Momming of your autistic 4th grader AND figuring out how to navigate school culture/power systems as a parent is soooooo valuable for all of us. Beautiful work.
People are either high or low energy. I’m normally high, but sometimes my social anxiety &/or depression deplete my spoons, & even the concept of faking a smile is exhausting. I can’t imagine how frustrating it would be if that were my barrier to being heard 🫂
You are an elegant person bringing forth a quality discourse. Drama is useless and tiring. Learning to assert ourselves is valuable and it doesn't have to be dramatic. I am an autistic 66 year old woman who figured out 10 years ago that there was terminology for my quirky and odd personality. I spent most of my life working around the planet, feeling comfortable and doing well in other societies and, only recently, realized that a big part of it was that ,in a different culture, no one expects you to fit in. Listening to you has made me feel more peaceful in this American culture. Thank you.
Omg, this is exactly my conclusion about why I'm not heard or why I'm misunderstood all the time or even disbelieved! Thank you for talking about this.
u are so brave for doing this. i’m still unable to process traumas that happened over a year ago so i know it’s difficult. i really respect you for this! ❤ also, i rlly relate to u on the anxiety of having health problems during education and trying to navigate that. before getting a surgery in 2020 (i was around 12), i had scoliosis so i would have to wear a back brace to school and while i slept pretty much al throughout my childhood. it was very stressful trying to participate in gym and trying to hide the fact that i was wearing a brace. it’s nice to see someone who relates to that… makes me feel less alone.
Yes. Yes. Yes. At the beginning of my relationship with my ex-husband, I explained to him that up until then, people hadn't heard me unless I broke down or fell apart, and I really wanted this relationship to be different. It didn't work out that way, but I was aware of this. When I say something, I mean it, and it's important. If I say this is too much for me, or I'm in pain (I have auto-immune chronic things too), or this doesn't feel right, I mean it. And I don't want to have to create drama for it to be important. Lately, I've also been thinking of simply going unedited (and live?) on my channel because I feel that pressure of putting on an energy that is sometimes (not always) not true of the moment. But because my message is important and I want it to be heard, I feel I need to. I'm not done thinking about this! I also can totally relate with my insights and ideas being used by other people who then take credit for it. Thanks for this video.
25:47 I think it’s bogus for people to say that. You’re here to speak largely to the lower support need community. The only time I could understand that complaint is if there are specific support groups or specific school meeting etc aimed at high support needs autistics and a lower support needs autistic was dominating the conversation and not allowing the others to speak. Otherwise, I think it’s just projection or something from PARENTS of high support needs autistic children that say this because they consider themselves warriors or martyrs against autism, so anyone that puts doubt to that narrative has to be shut up, or it would make them have to examine their whole worldview, which they absolutely do not want to do.
I am so thankful for your content!! Without your videos, I would never have explored an autism diagnosis for myself (just diagnosed in April). Please don’t lose sight of all the good you’re doing for people like me. Low-support needs and late-diagnosed folks are still in need of community and support. Truly, thank you for putting yourself out there and doing all that you do! You totally inspire me. ❤
Thank you - I absolutely concur with this. I have felt unheard all my life, to the point of feeling invisible... very painful. I don't want to be artificially animated - it's exhausting and unnatural. I don't like it in others either. Quiet, calm narration is just so much better.
I completely and totally get it with not feeling I have a powerful enough voice, if feeling unheard and/or ignored. It feels really invaliditing, embarrassing, and frustrating. I hear you and everyone who responds here, and I so love this community because we're all so real and helpful and belong.
when youre so used to survival mode throughout your lifetime as an undiagnosed autistic, its like trying to fundamentally change your beliefs to then suddenly be able to/comfortable with the whole display of emotions and social skills that are required so often. aka, it will be almost impossible to perform physical or emotional pain in a way thats not natural to you. i feel this too, and it often seems like im setting myself on fire just to be heard. i wish you didnt have to perform these things and could just experience them the way that feels natural, but theres no alternate autistic society yet where we can just be and be seen and heard. ♡ hoping something changes in the world for us
I've had life long chronic illness, seeing 4 medical professionals this week alone. I'm pretty sure I'm going into perimenopause and I'm only 38. People don't understand how exhausting it all is.
Your voice and the way you speak so calmly (like myself 😊), gives me comfort and calms my anxiety, when I feel lost in this world. Hearing about your experiences helps me learn more about myself, while I am still waiting for my assessment. Only 3 weeks more until the first interview, not that I need others to tell me, but for my kids sake I think it is important. I’m 47 and my oldest daughter of 13 just got her Asperger’s diagnose, that is why I got the notion that it fits me as well. But hearing your struggles with your kid, resonates so hard, with my own 2 daughters of 10 and 13 and what they struggle with in their social lives. I also have trouble finding my time to say stuff in these meetings, I feel like nobody is seeing me, or they do and think why is he not saying something? So believe me you are heard and felt, by those that need to hear you 🥰. And this raw view of you, makes it so much more real and connecting. Your courage to do it, still knowing there are voices that will speak badly of it, is so impressive. I can’t find the words to describe what I think of that, but bravo 😊
Thank you so much for sharing your struggles, you have been an enormous help to me.. You put into words things that I have a hard time expressing correctly .I have always felt like the most misunderstood person in the world. maybe what I have said has really not been heard at all. i am 73 years old and have only realized that I am autistic for a couple of years.. So much of my life now makes sense to me.
Thank you for being brave and vulnerable here. It helps. (TW, anger at medical system) I’m wrestling with similar anger rn. I’m dealing with health issues related to immune system/inflammation etc etc etc, and so angry and grief filled that ALL of my diagnoses (AuDHD and medical) have happened in the last 6 years (I’m 55), and they are ALL conditions I had for my entire life that gradually got more and more problematic. And I couldn’t get a professional to really listen and help despite literally DECADES of trying. I didn’t know the game rules of how to get the system to respond. But WHY is it a game with rules?? Why couldn’t I say it and be heard and believed?! Why do we have to Prove ourselves? And now my body is metaphorically a multi system small fire, and it didn’t have to be… And I need better ways to help my now-young-adult kids for when their bodies start being more problematic. Taylor, it’s so comforting to be here where others go through this too. Your Voice Helps Us.💫 12:55 I say that too sometimes, “I feel so autistic right now.” When it’s emotional, when you’re filtering fast, processing with all your will, rehearsing and memorizing to hit all the key points… GAAAAHHHHHH!!! “What are they wanting from me” is such a difficult question sometimes. But “should haves” are too big to beat ourselves up with… I think we get so used to trying to present as calm and sane, and so used to gaslighting ourselves, that we don’t know how to strongly communicate when something is very wrong. I’m sorry you’re going through so much right now, it’s especially worse when it’s for our kids. You’re not alone either 💜💖Sending hugs and/or lots of positive vibes ✨
I really resonated with how you described not being heard and feeling like you have to be externally loud to be believed. Im not someone who shows how im feeling on the inside externally very well and i dont know how to without feeling like im being dramatic which then leads me to gaslighting myself because im pretending with my actions even though the feelings im expressing are legitimate. Its such a frustrating feeling, especially when you need help or medical attention and your words arent enough. Acting out of whats natural to you is also just impacting you mentally and there just doesnt seem to be a simple, straightforward way to express your needs and be responded to adequately. I also love the 'real' videos. Its a different kind of real to your edited and scripted videos and i get what you mean by how this kind of realness hits different. The same way that people dressed up for a formal event are still being their real selves for that setting, but they have other real selves for different settings that all have slightly different vibes. Anyway, thank you for posting this video and doing everything you do
I am also this way with most new situations. Doctors appointments are so hard for me to navigate, especially bc it's a one on one with direct attention and focus and eye contact and slow processing. And the slow bleed thing is such a good description. Thanks for letting us in.
Your empathy, which is a beautiful quality, leads you to come across as apologetic. Trying to take everyone’s perspective into account leaves you vulnerable to those who use forcefulness to gain control of others and situations. You don’t have to come in to a situation “guns blazing” or angry. You just need to be clear and firm. Decide ahead of time what you will and won’t accept and stick to it. Write it down if you need to. You have really great instincts, but you feel so much of others’ stuff that it can cloud your ability to think clearly. Try to shift your perspective from trying to take everyone else’s needs into account to trying just to be clear about your own perspective. Genuine people will appreciate knowing where you stand and what your boundaries are so they can deal effectively with you without the frustration of trying to guess where you stand. You are such a strong woman. It’s ok to hold yourself and your family first. I am truly holding best wishes and hope for you and your daughter to get through this. My daughter went through a really rough time in school around that same age. It was TOUGH to see her so hurt. She is 35 now and has her own family. We are pretty sure her oldest daughter is on the spectrum and will be starting kindergarten next year. Mom is grappling with lots of questions about putting her through testing and creating more stress and possibly stigma for her. Your channel has been so helpful and comforting. Heartfelt thank you ♥️
I have recently decided to not go back to the local medical center. I have been gaslit and it has been made clear to me that they don't care one little bit about me. Medical negligence has led to four months of illness severe enough that I can't work --- and this negligence was noted and brought to attention and challenged multiple times. NO response whatsoever. I've got a new little doc who is now doing mop up for his cohorts with me, but despite his efforts he as only 15 minutes with each patient and is constantly forgetting why I am there and insulting my intelligence by treating me like whatever patient came before me, forgetting who I am, repeating the misdiagnosis made earlier (and so I have to correct him) and I start to get really, really angry and that makes me exhausted for two days. So . . . yeah, I get it.
I relate. They've almost killed me twice, but my entire life is filled with terrible experiences from these psychopathic medical cretins. It's exhausting, frustrating and traumatizing. Try to float.
@@JohnTheRevelator11 Yep, have always done that. My late mother was an RN and a licensed nutritionist who studied natural medicine all her life, my niece is a newly minted nutritionist, my other niece is a somatic therapist and I too have studied all three of these fields (personal study, no intent to become licensed). However, I live in a very remote, rural place and we only just got our first naturopath -- who I am obviously seeing. But . . . America . . . medicaid/medicare doesn't cover my naturopath or my acupuncturist or the very talented physical therapist (he doesn't bill them) or nutritionists or somatic therapy or . . . you know.
I don't know if I am autistic but have always been quiet/ introverted and relate so much to the frustration that this world is built around who shouts the loudest wins. It's just not a fair way to treat people.
I'm so glad to have found you! I'll be catching up on all videos and 99% of what you list, say, and describe is stuff I fully resonate with. Thank you!
You are a lovely human. Your honesty is appreciated. This all resonates. I was diagnosised adhd at age 46 and autism at and autism at 57. I was also married to a man for 23 years that was a passive aggressive covert narcissist. A lot is coming out.
Regarding those saying that your voice is talking over those who need more support: bullfuckingshit I am less adept at masking and therefore higher needs than you. I don't have a channel or other platform. Because I couldn't speak from it if I did. RUclips channels are literally free. Your voice helps me. I use the things I learn from you and other creators to know what help I should be asking for. What names and terms to use to get my meaning across. You take nothing from me. You cast no shade over me. Those who say otherwise are trying to emotionally manipulate you into silencing yourself - because they are uncomfortable with your message and don't want to hear it. And are not satisfied with just watching something else instead, but want to make it so that no one else can hear you either.
I couldn't agree more. In this well-thought-out and well-written response, you've covered many of the things I was trying to find the right words for. Thank you.
This has affected me to my core lately. People solely interpret me by the tone of my voice and my demeanor/intensity... no one hears what I am actually saying or trying to convey. This works in two ways. The way you are describing, and also, because I am very passionate and can get caught up in the subject matter, people think I'm being dramatic or losing my mind about something, when I am literally just talking about it. The end result is always the same, I am just dismissed. And I empathize so badly with not being grounded in the ability to assert yourself, or structure your own communication in a way that neurotypicals will view as fitting. I feel like a different species.
I’ve felt this exact same feeling so many times. It’s like… it’s already hard for me to express my emotions and feelings, so when I do I really need to be heard… and often people downplay it or don’t fully believe it as I haven’t “made a big deal about it” and it makes me want to do it even less, like a cycle that never ends. It leaves a scar every time Oh and I had the same experience when in labour. Birthed 3 kids and in all situations midwives didn’t believe how close I was to delivering as I wasn’t making a scene. For my third it was a very tricky delivery and 1st epidural didn’t work and I only “realised” as I was about to deliver as they kept asking if I was feeling pain or pressure and in my mind I am just making bullet points about how to differentiate between the 2 while having full blown contractions
I think it's difficult for us to help other autistic people to navigate because that's our issue. We just communicate differently, see the world differently. It's difficult to know what to do when dealing with neurotypicals. Big hugs.
THIS IS WHAT WE WANT. I am too unedited. I look totally crazy in some of my videos but it actually me. I was called crazy and weirdo growing up, which I a really took as a compliment.
This has been me. while I don't have kids to defend, I've had to defend myself at work whenever someone complains about something I've done that was Autistic (hyperfocus, being to the point which they thought was rude). I've had leaders I told about my diagnosis who responded with "I still don't know what that means" after I've had to remind them for the umpteenth time. It's so frustrating and exhausting. Thank you for sharing your struggle and making me feel less alone.
I remember being in fourth grade and feeling lost, out of place, scared, and just straight confused everyday. I just didn't know what to do with the other kids. It was like they all changed over the summer. I had two friends. One didn't like me any more and the other one would play with me sometimes. They were all breaking up into groups and I couldn't be in any of them. I couldn't tolerate teasing. It was awful. I didn't have a diagnosis everyone just thought I "had mental problems" or was a discipline case. So I feel for your daughter. She has something I didn't have. A mother to go to bat for her and a diagnosis to point to. You stood up for your daughter and when you struggled you aught help and support. To me that is incredible. I am in awe of you. I hope you realize how amazing you are. Also, having that diagnosis helps in many ways. When you first started talking about the situation, I thought was this is why I don't have kids. How could I take care of them? How would I be able to deal with situations like that. By the end I was thinking maybe I could do that.
Yes the teasing! I hope this doesn't sound weird but I'm a 5'4" man working with cars and I don't know what to do with teasing or ball busting. I know I'll come off too "sensitive" if I say anything but I also don't know what to respond with so they call me quiet and it's like I don't know what to talk to about with my coworkers and it's just so frustrating they have this view of me and it's not me but I don't want them to know me as well out of fear.
I don’t know if I have ever heard anyone else express so perfectly exactly how I felt the first 40 or so years of my life about dealing with most situations regarding speaking to almost anyone. I’m now in my early 50’s. And I’ve had more experiences where because I wasn’t even aware I was autistic at the time, but instead I was simply working on developing all parts of me, I determined I’d be more assertive in expressing myself. I’ve had to confront people both hardly known as well as those in closer relationships to me. And I know this. People who WANT TO HEAR YOU, they will listen. People who want to prove a point, can’t listen. Determine whom you are speaking to and you will know whether or not you are wasting your time. And in answer to your question, yes, Taylor, sometimes you DO HAVE TO LIGHT YOURSELF ON FIRE SO TO SPEAK. You have to decide that you are important enough to CLAIM ENOUGH SPACE AND ATTENTION that a fire would require from other people in the moment that you require some assistance. If you’re having a mini-crisis without physical harm having happened to you, you can ask someone for emotional support right now. That’s why you have your best friend on speed dial, isn’t it? But if you don’t know how to put yourself first, then no one else is going to know that you need to be put first in the line. Claim first when you need to. Otherwise you become a martyr. And as for anyone who tells you that you are speaking “louder” than others who can’t say anything, what nonsense! First of all, those people simply do not know if this is the case. Are they inside of every other person’s internal experience? You cannot replace or “take up” someone else’s space here on this planet. Other autistic people, regardless of their level of need, will determine for themselves in their own way and time, how to either speak up or not for themselves regardless of what you do or say in your lifetime. And you shrinking away in the shade serves NO ONE. Having the courage to stand up for your children, yourself and other autistic people (whether we are considered high functioning or whatever other label we are given) - is your sovereign, god-given right as a human being. You choose. You elect to serve others with your voice. It’s a powerful, clear voice. You’re using it wisely. Other people who throw out shame like this are projecting their own powerlessness, guilt and shame for not doing more onto you. They are blaming circumstances outside of themselves and you are an easy target due to your empathy. I experienced the same thing when I was your age. You’ve got to claim your own power. It’s there. I see it whenever I have come here to get some good information. I do not allow other people to do this to me anymore. When I hear nonsense like this, I call it nonsense. How could your videos be blocking anyone from getting help? The person accusing you of this is angry, jealous, frustrated and you are being asked to stand up for yourself the same way you would do for one of your children. It took me so long to defend myself to the same degree that I did for either of my kids who are now grown. Why? Didn’t I deserve just as much protection as the two of them? And if I hadn’t been protected, WHO WOULD BE THERE FOR THEM?! Be sure you remember that when it comes to your kids. You can’t protect them if you don’t claim what you need for yourself.
I completely and totally get it with not feeling I have a powerful enough voice, if feeling unheard and/or ignored. It feels really invaliditing, embarrassing, and frustrating.
For us who need less support, often the only support we even get is peer support and videos like yours. Many of us aren't even diagnosed without us recognising ourselves in the videos first.
⬆️ this. ❤
When i was diagnosed i didnt react. The doctor was like what are you feeling? My reaction: are you sure? I was so gaslit my entire life it took me awhile to realize i was acknowledged.
I am only pursuing a diagnosis now, at 44 years old, for AuDHD because of RUclips Shorts videos. I started getting ADHD experience videos that I found interesting, but only slightly resonated with me, then came the adults with autism videos that resonated strongly. Eventually I found some people with AuDHD making content and it was like seeing my entire life explained to me.
Videos like this I've have literally made me feel heard and understood for the first time in my life. I have some answers to the "why am I so..." questions.
I'm only seeking a diagnosis because I have a high need for information and confirmation, I am very low support needs, I'd love assistance, but I'm mostly capable of taking care of myself. If I can have a diagnosis confirmed it will help me explain myself to others in a more concrete way, or so I hope anyway.
@@PeculiarGirlKelly I'm a year older. I have some professionals thinking I should absolutely get diagnosed, but those that could refer me to the process are gaslighting. Or then just simply saying "you may be, but you don't need the formal diagnosis for anything, we're saving resources". (Despite that making me vulnerable to gaslighting by other professionals.)
So, self-diagnosis and self-help it is.
@@MiljaHahto That is so frustrating, and a story I've heard from many people, so far the people I've worked with have been seemingly open. It probably helps that I'm allowed to self refer through my company's EAP plan.
I have largely avoided therapy, as for me it's not been super helpful and often is actually damaging to my mental state.
Can you choose your doctor where you are? If so maybe it's time to try someone new.
I saw a really good analogy on TikTok today:
Everyone is a little bit autistic just like everyone is a little bit pregnant. You can have morning sickness and not be pregnant just like you can have anxiety and not be autistic. So unless you want people to start saying you’re a little bit pregnant when you’re ill, then stop saying everyone is a little autistic.
And I LOVED it 💯
Sending you all of the love and good vibes, Taylor 🫶🏼
I think of it like traits vs clinical diagnosis. With it being a spectrum, what exactly is the tipping point that justifies a diagnosis?
A diagnosis is made to identify an illness or injury, but this spectrum does enter into some debate over whether benign personality traits should be included as an illness worth diagnosing in order to get some kind of treatment. Some aspects of autism can require something to relieve the person, such as help with sensory issues for example. There should be more discussion about who exactly needs modifications when a society can't cope with benign personality traits of someone not coping with what can often be described as a toxic environment, situation, or societal norms.
Everyone might have a trait in common here or there, so what is the goal in diagnostics? It has to do with who simply isn't coping well.
Societal norms do include the "song and dance" facade mentality. What they're basically saying is that pretentiousness has been accepted as a standard, but not even nt people are actually coping or happy with it either, so that's a lie. They just don't know how else to be or get by in a society that requires a certain level of pretentiousness to make a living, or survive. For millennia people have had to navigate a social environment that includes predators for instance.
Something I've noticed is how vulnerable autistic people would be to someone with a predator lean that lacks empathy, and how difficult it is to recognise them. Predatory people are very good at using the systemic pretentiousness to go incognito and manipulate others into believing they are the problem instead to cast off doubts about their own character. Autistic people are often very good at turning inward into their inner world, and are very prone to internalizing any toxicity around them. What I often don't see autistic people very good at is knowing what to do with it before it's there, let alone after it gets internalized.
Sometimes the problem isn't actually you. Sometimes benign personality traits becoming diagnostic criteria has put the attention in the wrong place, because they aren't the problem. When difficulty coping is in some way censored, it can lead to wondering what we've done wrong, but we haven't done anything wrong, and the call for attention could inadvertently bring attention where someone doesn't want it, so we experience censorship and it doesn't make sense to us why. I say "us" but I can't be sure it's only autistic people, so I mean anyone could wonder why. Anyone could be gaslit for example, and how would they know the reason why things are like that?
While I feel strongly this needs to be a conversation (no doubt had with some soothing cuppas or something), the priority and goal in my perspective is that people can be safer. Unmasking where a problem might actually be can be very dangerous in some situations, so while it's good to be heard and get to problem-solving as a simple and straightforward task, there's a need to be careful too, and just do the best one can to get to the other side of a difficult moment.
Ideally a person wouldn't need a diagnosis or label to simply be treated with dignity and respect as a human being in a diverse society. Too many people would fall through the cracks of not getting approval by having a medical note. For anyone undiagnosed, they also deserve to be treated humanely with their uniqueness in mind. We just don't know others like we can know ourselves.
Maybe there really are many on the spectrum without a diagnosis, and so have to assume they're "neurotypical". If you see someone who comes across as nt, they might even be masking. How do you know every time? And do people with a diagnosis owe everyone else an explanation of why they're unique? Are they obliged to have a sticker on them saying they're autistic? I would hope not. If someone is willing to share, it's great as a choice. It tends to mean that's when they really need to be heard.
Instead of telling someone to stop saying something, maybe in some way they need to be heard too, and maybe it doesn't actually invalidate anyone in the process.
YES! I am an NT man with an autistic wife and son, I feel I am constantly correcting people on that perspective. The pregnancy analogy is perfect!
That is GREAT...Thank you for sharing!
This meant so much to me, ❤ This struggle to be heard is real. It makes self advocacy so fn hard 😢
My go-to analogy of saying "everyone is a little autistic" to an autistic person is a lot like an average NT choosing to compete in a professional Field & Track competition, losing in every single event, and then proceeding to go to a paraplegic individual and saying "I totally know how you feel being handicapped."
I used to believe my voice wasn't heard by many people but as I've gotten older I've realized that sometimes, the "right" people or the people who really matter to me and what I'm saying actually hear me. I think those that don't hear me will never truly understand me or care about what I'm saying. My world gets smaller every time I encounter those situations but it's comforting in that my words are being heard by people who care about me.
This is a really comforting perspective. I can see how this could be true for me as well!
I think adults were supposed to be able to pay attention to anything without the need for histrionics, I think once again the normies have part of the blame on this.
Yes, it’s been absolutely unbelievable how misdirected, misguided, misunderstood.
These incredible videos are truly helping me understand and help the real me. Thank you so much. ☀️
As a neurodivergent mom of 3 autistic kids, I wonder if sometimes the person who hears you and gets credit for the thought is actually just translating your words for the group, whether they realize it or not. I've been told we say things differently from other people, and I feel like I've been "translating" my kids for teachers and relatives for their entire lives
Relate to the smaller support group as you reach out to the existing group... Sucks.
The real autistic community knows how we all struggle. We know we all struggle in different ways. Anyone that has an issue with our spectrum doesnt understand us yet.
The lack of being heard is such a trigger for me. My narc traits come out when I feel overlooked.
I have a stronger sense of justice and ethics than most around me. The narc says, this is illegal or wrong to the rules, but others see it as excuse or threat and distance from me.
But many employers don't want whistleblowing, they prefer boeing response. Twice. So I get fired not supported
Narcs are whistleblowers.
@@Sherlock423 Amen to that. injustice/cruelty boils my blood to an extreme degree.
It can trigger me when people misinterpret my motivations especially when I am trying so hard to be helpful. Sir Anthony Hopkins quote is almost a daily mantra, "It's none of my business what people say of me, and think of me. I am what I am, I do what I do. I expect nothing, and accept everything. And it makes life so much easier."
Wish you and your daughter peace in finding a solution for school.
That's a great quote. Thanks for sharing and also for your kind sentiments.
@@MomontheSpectrum Your videos have been immensely useful to me in giving space and quiet understanding to the ASD people that I know. Anthony Hopkin's statement comes right out of Alcoholics Anonymous, where dual/compound diagnoses are rife among us, with health complications related to stress. I have passed links to your channel
The more I'm able to "expect nothing, and accept everything" the more I'm free to live in the present moment. It's life changing. Thanks for this quote! 💖
THIS 100%
He was RICH. He didn't have to kow-tow to bosses, judgement and derision. The rest of us have to care what others think - our bosses, co-workers, church comrades, club members and in any social context. I am autistic and I have spent my life masking and dumbing myself down just to get by. NO boss wants an employee to be smarter or more creative than he is. NO group wants an ODDBALL who is in anyway different. The motto of the proletariat is "Fit In Or F*ck Off."
I’ve had people walk away from me mid sentence when I was talking. It’s humiliating. And you don’t have to constantly qualify or edit yourself. We know that you aren’t speaking for everyone. But I also know that We’re all so afraid of stepping in the verbal minefields that we tiptoe through the English language to avoid attacks. I understood you perfectly.
Same here, and it’s my husband who does it. He also likes to yell when he’s mad, even though he knows what that does to me.
Love this comment.
And yes same here.
Same here. Humiliating is a good way to describe it. 😒
I understood you very well, also. There is nothing wrong with getting advice or help with a situation when you need it.
I once has a situation where I was standing talking to someone - and another person came and stood BETWEEN us with their back to me, right in front of me, and started talking to the person instead!! What is that?! 😟
And the person I was originally talking to did nothing about it, they just accepted the new conversation and ignored me, too. 😕
Why do people think it's okay to be abominably rude to us? WHY??? 😢
Expressing oneself with a simple, clear, concise sentence and not being heard is so frustrating.
We have been speaking since 70,000 years. We have been writing for a few thousands of years. We have literature, philosophy, history, science. We have killed each other over written words.
You'd assume words have power.
So why is it, that the sentence: "Please help me, I've got a serious problem", can only be understood if while saying it you also cry, make faces, beat your chest, jump up and down, pull your hair and scream and shout?
If words mean so little, why haven't we stayed on the trees?
Thank you for wording this feeling of dispare so apt. It made me feel heard, and I didn't even speak. I hear you, I see you. Your words have reached me.
This was me 25 years ago with my family, and even when I did cry, scream and pull my hair out then they thought I was being manipulative.
@@lucinevertanes9564Indeed. My experience is that when we speak calmly, logically, clearly about difficulties they're either dismissed as minor or our requests for support are ignored or denied because we look as if we're 'coping well'.
However, if we break down and either become loud and angry or weep and wail in distress and despair, we're accused of being aggressive, hysterical, overly dramatic, irrational, and so on. In such cases we're either denied support altogether due to 'antisocial behaviour' or told to go away and calm down and come back when we can be calm and rational - *sigh*.
@lucinevertanes9564 exactly my thought...when we DO react strongly, someone assumes we are being problematic, not that we have a problem and need help. Catch 22.
Straightforward sentences that don't make sense to native English speakers is so frustrating to me too.
Noun verb adverb, what do you not get?
I'm also considered "high functioning" and I hate it because people don't understand how much I struggle every single day. My whole life I've felt like a ghost because it seems like no one really listens to me, until, unfortunately, I'm brought to the point where I'm having a meltdown. It's exhausting.
Yes. This. I have TBI as well from a massive surgery and I always say just because I don’t have crutches doesn’t mean I’m not broken. But people won’t ever be able to comprehend that.
"My whole life I've felt like a ghost" This. It's terrible, but nobody and care.
I often feel out of place in the autism community. I wear two hats. I'm a late diagnosed autistic woman and I'm a parent to an autistic child with high support needs, who is also nonspeaking. I think the autism community is fractured, and that's very unfortunate. I think when people say that lower support needs people are talking over those with higher support needs people, it comes from a place of frustration and pain. I can say that I do not receive enough support to take care of a child with a disability. We don't get enough financial help, respite, and emotional support for what we are expected to deal with on a day to day basis. We are tapped out and tired, expected to do it again the next day. I think parents like me see other lower support needs autistics online and may even be jealous because our kids aren't able to do that yet or maybe ever. I think there's fear involved, too. Fear that those being listened to will be those with spoken language and the nonspeakers will be neglected and they rely on others when we are no longer here. I think all you can do is listen and support those with different support levels because we can all learn from another. Even though I feel out of place in some groups within the autism community, I've never felt that way here. Thanks for being vulnerable! 💞
As I'm reading your comment, I'm connecting how this really relates to how I feel with the school situation - I feel like I have to communicate the loudest to be heard. And maybe with higher support needs it can feel overwhelming bc the communication abilities are very different... and it is probably very frustrating to feel like maybe sometimes your voice is drowned out or trampled on by others who seem to be able to "speak up"... I hope this isn't putting words in your mouth. Just starting to see that maybe we are both feeling similar in different ways. 🫶 Thank you for sharing your perspective. I can hear that you're feeling less than supported and exhausted. That is an overwhelming feeling.
Such insight and thoughtfulness and grace in this reflection. Thanks Whitney.
Taylor, idea for exploration. Is there space on your channel to interview Whitney about their experience and their kid's experience to provide more insight and visibility into higher support need experience. Also, don't stop what you're doing - it's so great!
I have a high support needs disabled child as well, and though I believe he shows many autistic traits, he will never be diagnosed. He has a tbi diagnosis, so doctors will not diagnose him with anything else neurodevelopmental or the like as they have no way to know which came first. I, however, have been recommended for testing and go later this year. After what I have learned about autism, I now understand everything about myself and my life in a way I never was able to before.
That said, I was a low support needs adult raising a disabled child by myself as a single mom. I understand exactly what you are talking about! It is like pulling teeth to get any help in certain areas of the country I live in. What did I do? I moved us to a state that would help me and my son. Now that he has the support he needs, we can both start to heal and breathe. I love my son more than anything, but I want to be able to be around for as long as I can, which means finally taking care of my needs as well.
If you don't have the help you need, I promise help is out there. It might just not be where you are looking for it. And it might take looking in or moving to a different place to find that help. You are not alone. Don't forget to take care of you 🫶
@tarawatterson4188 you're welcome and thank you! 😊
I'm 74..... just diagnosed 2yrs ago. I love your videos. So much of what you've gone through has helped me make sense of my life. I've gone through my whole life feeling not heard, misunderstood, and like everyone else has figured everything out, so why can't I?
Your videos help me so much more than I could ever say. Thanks for doing this. ❤
wow! i just got diagnosed a couple of months ago at the age of 50, and i thought that was hard... i'm sending you a BIIIIG...whatever it is you find most comforting (i was gonna say "hug" but some autistic people really hate that, so i let you choose). ❤
I can’t count the times I’ve said something or had an idea I put out there then it’s rejected or ignored and literally a few minutes later someone else will say the same thing and the group goes wild. I’m I’m just there. I’ve called it the middle child syndrome. Invisible.
This. Indeed.
Yes, all the time. Especially at work.
I feel like Cassandra every time I say or suggest something that is ignored or dismissed but ends up being the solution or the way things turn out.
All the time.
All the time but WHY
When I get the comment, "everybody's a little autistic" or "we're all on the spectrum somehow, " ... I will stop that line and say that actually if they look at your brain and my autistic brain, they can see and point out the biological differences.
It felt good to say it and I look forward to saying it again when someone says it to me again.
I’m taking that - thanks!
Good idea!
I'm OK with "we're all on the spectrum" As long as people realise a spectrum has ends - and starts at zero or "not". Most people are on the "NOT AUTISTIC AT ALL" end of the spectrum.
Another thing about the spectrum is - most people who say “we’re all on the spectrum somehow” tend to view “the spectrum” as a one-dimensional line with “not autistic” on one end and “extremely autistic” on the other end. That’s not a spectrum. That’s a line.
“The spectrum” is more like two things people will relate to better - rainbows, for most people, and for more techie or musical types, a graphic equalizer. “The spectrum” is composed of many different individual one-dimensional lines all combined together. Being “a little autistic” or “on the spectrum somehow” means that you show up on a couple of those dimensions - usually a little bit. Being autistic means showing up significantly on many or most of all of those one-dimensional lines or bands all at the same time, all the time, every second of every day, more or less since we were born, and with no real deviation from that state from that point until we die. Autistic people don’t get a vacation from our being on the spectrum and showing up significantly on most of those lines all at once. It isn’t something that “shows up once in a while” when we’re having a bad day or whatever. It’s something we’re dealing with 100% of our lives, constantly, unrelentingly. For us, a good day just means those things aren’t interfering as much as they usually do, but we’re still having to deal with them and compensate for them even on our best days. It’s still taking its toll and wearing us out, it’s not as if it isn’t there or we don’t even notice it.
Anyway, that’s probably enough to explain another point of view for what being “on the spectrum” really looks like vs. how neurotypical people tend to view being “on the spectrum”.
I told someone that about Autism and ADHD. She said that thats just normal, I do that. I said "actually they have proven that autistic and adhd brains are physically very different"
She replied "I don't belive in Conventional medicine so cannot believe the bullshit they make up"
This hit the mark. All my life I've felt like I wasn't seen or heard because I wasn't "on fire", even though I WAS on the inside, but everyone else's "emergency" was more important, and I couldn't and didn't want to be the way all those other people were - rude, self-centered, obnoxious...it seemed so easy for everyone else, but I couldn't be like them even if I had wanted to. So I bled, silently, internally...until there was nothing left. I learned to ask for nothing, to want nothing, to need nothing, to be invisible - and became less, everything inside slowly erased, washed away in the flood of emotional incontinence all around me of all those who demanded so much and valued nothing, especially not the quiet, patient voice of reason that couldn't shout immediately enough or loudly enough to be heard over the mob. Even now, if I speak up to be heard or object to being ignored or mistreated, I'm the one accused of being rude, anti-social, selfish, or "unempathetic"- it seems that if you're different and dare to have a voice, the reward will be a marshmallow toasting in your honor, and the bitter taste of ashes.
If you don’t mind, I would like to journal this comment word for word? I’m at work and almost burst into tears; it left like you wrote this from my very own soul… thank you so much for this ❤
@@potatuhtot5125 You are welcome, and welcome to journal it until there's no more ink if feeling it flow onto the page from your own hand helps you - I truly hope it does, from one soul to another. 🙏🕊🤗
I second that. And you said it with such a poetry of words and images. I hear you. ❤
@@augiespicer1270 thank you for the kind compliment - it's my way of growing fresh feathers and trying to rise from the ashes, in hopes of using my quill to inspire others to transform into the Phoenix that burns inside them. If you have to burn, burn bright, be a light in the dark for others, and perhaps teach humanity something about the destructive dangers and unnecessary suffering caused by playing with matches. I'm sorry that you have cause to relate to my words, but I hope they help you not feel so estranged. 🙏🕊
I'm a 44 years old, late diagnosed with ASD-Level 1and father of two, my son is autistic, too. I love your content and your channel and the "unedited" version of you is even better. Greetings from Germany.
Very similar situation to yours, diagnosed at 45 out of the blue, two beautiful kids, I don't know if they are ASD, maybe the elder but "high functioning". For my all life I felt "strange", often wrong, clearly a small minority.
Greetings from Italy.
I feel in Europa we are very late compared to US, Canada or Australia in talking and accepting a less pathological vision of ASD.
Hi! I'm considering moving to Germany. What is the situation with mental health providers? Is it possible to access evaluation (for at least Adhd) for English speakers? Maybe in private clinics? I would appreciate any input.
I'm an American living in Australia the past 20 years; just diagnosed with ADHD-inattentive and ASD-Level 1 last year at 41. My mother completely rejected the news of my diagnosis, largely because she doesn't care to learn new information, and she thought I was perfect, she still argues with me about it if I mention it, so even more masking now required to be in touch with her. 🙄🙄🙄 What's the actual point of anything? I forget regularly.
@@Fabio_GarzenaI'm 45 and I'm pretty sure I'm autistic.I live in Switzerland,think the same way you too,we are very behind
Your representation matters. For a long time the only representation we've had are people with higher support needs. That leads to many people not understanding that they are autistic, not getting diagnosed and dealing with internalized ableism.
People need examples of all kinds of autism so they can have a rounder idea of what it means to be autistic. You are helping people (like me) figure out that they are autistic.
I feel your pain in trying to communicate because I deal with it too. I just went to an IEP meeting and I was told to email the principal to advocate for full support for my child. I don't know how to write that email.
❤
This is just a small piece in a big, difficult puzzle, but it helped me recently so I'll pass it on. Chatgpt (free AI website) answers questions very clearly. If I'm not sure how to do something (especially if I can't phrase my confusion in a "google-friendly" format), I just type the word salad into chatgpt and it usually gives a pretty good answer. I recently needed to email an academic asking a question and I was unsure how to greet him, what elements to include and leave out of the email, how to approach a question that could imply that he's wrong, etc. I outlined my intention and my question then asked "how do I write an email about this to the author of the article?" and it spat out a generic template. I still change the wording and add my own sections, but it gives me a rough idea of what people are expecting. I also find it helpful for really broad/vague/niche questions like "how do I figure out what community organizing is occuring in a specific zip code". It's not 100% perfect but it usually acts like a person who's involved in the area you have a question about, which can be really helpful.
You’re awesome. I appreciate this raw, unfiltered version of you. Thanks for being real.
She cute.
This is so relatable. I feel like when something is emotionally charged I get quieter and more even toned at first in an attempt to not be overly emotional because then people will see me as being dramatic and I won't be taken seriously. But because I sound more calm no one really listens, so I end up asking for support over and over until I'm at the breaking point and then I have a meltdown and everyone listens, but the whole point is that I was trying to avoid the meltdown by asking for support before it happened but no one takes me seriously until it's too late.😔
Whenever I have a migraine everyone will walk on eggshells around me and suddenly be careful about loud noises and triggers.
I think it clicked with some people in my family that the way they are so kind and considerate during a migraine is about what I need for my alone time. Usually they don't think about alone time as something crucial.
My brother remembers probably the most Autistic thing I ever said, "I like people, I just don't know what to do with them." I Dow remember saying it but that is me in a nutshell.
I’ve often felt as if I’m invisible, an alien, or speaking a foreign language, or possibly all three.
25:11 I am absolutely on the same page that higher support needs autistics need their voices to be amplified and not drowned out. AND I have never heard this much conversation about autism in general and high support needs struggles in particular, ever before - so I’m confused as to why people keep claiming “autism popularity” is so harmful.
Yes. Invisibility. It must have something to do with that "uncanny valley," the flat effect that we have no consciousness of giving off but is, apparently, there. There's like this profoundly sub-SUB-conscious thing that seems to be going on among everybody else, where they've agreed, without even knowing they've agreed, that you're effectively not there. And when you do GRAB the attention in the midst of that group-thing going on, at just the strategic lull you've been waiting for where they have no choice but to give you a listen, you very quickly register that they're being...patient. Which is soul-shrinking. And then you really don't even want to talk anymore and there's nobody in the room dying for you to finish saying it than you are yourself. Funny thing is, I feel so free being alone because there is neither a duty nor a need to put in my own two cents, to join the "dance," to negotiate the dynamics. I don't need to feel like either a slouch failing to hold up my end of the conversation OR the unwelcome intruder. One does actually learn to embrace and love anonymity most of the time, it's such a freedom. Yet there are moments and places where you, like everybody, simply must make your point heard. There is a bizarre corollary to this, however. I am definitely an outsider in group dynamics, yet at the same time I can be called on at any moment to "perform," to come up with some amusing joke or recollection or, interestingly, a memory that nobody else manages to dredge up. I go along in the best humor I can yet I can't help feeling inside like something of a trained monkey called on to do a trick. In so, so many group situations in my life that's how I've felt, like Mr. Not There until the moment comes for "Ken, do something funny the way you do!" Is it any surprise my profoundest peace is in living alone. There are very VERY few people in the world where I feel safe to be both freely quiet when I need to be and freely conversational when I need to be, and like I'm never an object of perplexed, uncomfortable curiosity.
Thank you so much for sharing this, your descriptions are so much to the point: "...you quickly register that they are being patient, which is soul-shrinking". And then being acknowledged for behaving in a way that feels like a trained monkey. This is put beautifully and those may be helpful images for my people to understand...at least I might try. Thanks again!
A huge one for us is co-occurrence of hyper mobility and the pain that can cause and again no treatment just taking care of yourself. It’s just that our acceptable level stress is different so things that don’t seem that big a deal but you have to remind the doctor you are also autistic and dealing with that every day even though you don’t seem “that autistic”
Thank you for showing your real self.
I'm 43 and just learning that I'm autistic. Content creators on RUclips have been really helpful in helping me see myself in the mirror of ya'll. Actually, I think it was *your* video on how autism presents in females that was the light bulb 💡 moment. I congratulate you on the edited videos -- professional, helpful, welcoming. And I THANK YOU for this real moment. This week has been huge for me, with my autistic traits ringing alarm bells at me. Seeing others in their realness is so validating.
I realised only this year after late diag @ 56 i have spent my whole life full of cortisol and in a constant state of hypervigilance. I really appreciate your videos!!!
Just because other people don't understand what I need, or why I need something doesn't mean I don't need it! Being forced to go without effective support for 40+ years has NOT "made me stronger" or diminished my need(S) in any way. It's actually quite the opposite, I am 45 next week & it's so bad right now! Omg, I can barely function at all. I watch your videos & usually all I can do is cry. But oddly enough, that does seem to be helping me.
Anyway, Thank You for all that you share. I'm very grateful.
to have found your channel & to you for how much you share.
♡hugs♡
🫶
Allow your brain to metabolize: and perhaps gently remind yourself your processing and that takes random amounts of time
That just sounded like me talking while reading your comment!! Hugs to you 💜🖤
@naynayandwhip5839 thank you
♡hugs♡
Omg, this is a huge trigger for me. I can remember a few times someone actually made a point to let the teacher know I had said the answer first to a question she asked, after someone else had took credit for it. I had such respect for them after that.
When people say you're drowning them out, tell them they need to create their own channel.
HELP. Is there anyone willing to show Soldarity with disabled people and just straightup REPORT someone who has only cruelty to spare for disabled folks?
@@slevinchannel7589what would that solidarity look like?
@@winterroses2020 It's been so long, i barely remember, but i guess you can report/flag Bullies/Mobbers?
I relate to this so much. Especially the feeling of not being heard. I think I coped by communicating in a way where I over explain myself with the automatic assumption that people will not understand. Then this also is a problem. I struggle getting to the point. Yet if I am blunt and to the point everyone is offended.
Thank you for being real, Taylor. Sending you lots of love and healing energy. It is so annoying when the people who are always heard are the ones who shout the loudest, i resonate with this a lot, and I've found myself in many situations where this has been the case. It's made me feel vulnerable and less than. I hate conflict and struggle with confrontation 🙈 At the same time, i never want to be that person who shouts the loudest because they can appear very ugly, although it would be nice to be heard. i love this quote...."For beautiful eyes, look for the beauty in others, for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone." - Audrey Hepburn.
Thank you for your kind thoughts and the beautiful quote! 🫶
Thank you for this wonderfully insightful, true, brave and caring video as ever. I truly resonate with this on a deep level. For me it has always been so difficult to speak up and get attention, and I am simply unable to react with the high energy many people do, even if I often wish I could. And that leads to a lot of internal pain because nobody can see it or takes it seriously because I say it in a calm way, and often end up not saying anything because I feel people don’t listen anyways. It happened when my mom died when I was 16, it happens all the time with the therapists (like you say, how should an emergency be expressed, what is an emergency?), it even happens at home and with my work colleagues. I can be suffering a lot, but nobody knows. And if I ever explode because of the pure exhaustion of wanting to be heard, people around me get horrified.
So I thank you truly for these videos, they are incredibly helpful for the people on the spectrum that share these experiences. Maybe it’s a pity that we have to share the same “label” between people with such hugely different support needs, but I think nonetheless it’s crucial that also people with low support needs can get help, support and understanding and a sense of connection. I believe for many, exactly with this silent suffering as a core reason to all of it, sharing our expreciences openly can be life saving. At least for me the identification as autistic has prevented me from madness, and maybe I don’t need support in my daily life, but if I hadn’t been able to identify as autistic through all these informations that you and other fantastic people are bravely sharing at the cost of being criticised, maybe I would have ended up loosing my job, loosing my family, and perhaps ended up actually needing a lot of the daily support that we are talking about.
Therefore still, I think it’s a crucial and incredibly valuable work that you and others are doing, helping the community as a whole. It will be nice the day that modern psychology evolves to the point where we will have more words and concepts to express more of the different experiences on the spectrum, where everybody will have a place to be recognized and supported, but until then, we probably all need to share this space and try to get the best out of it for everyone.
Re: 10:25, I watched the film about newscaster Christine Chubbuck earlier this week and noted afterwards that, as a late diagnosed autistic (AuDHD) person, every day of my life feels fatally disrupted, in large part because the rest of the world doesn't understand how unrelatably dysfunctional it is to an autistic person. It's great that we autistics can learn about our condition and support each other more thanks to the internet but the conventional neurotypical world still isn't meeting our needs nearly enough for us to be part of "their" society.
HELP. Is there anyone willing to show Soldarity with disabled people and just straightup REPORT someone who has only cruelty to spare for disabled folks?
There's stakes in this request. Allow me to explain?
@@slevinchannel7589 While I appreciate your engagement it's not me that needs an explanation; as the film demonstrates, the onus is on neurotypical society to acknowledge, understand, accept, and accommodate neurodivergence.
@@slevinchannel7589 I think my understanding of my own argument is sound. By contrast your concern is only tangentially related so its introduction here is unlikely to receive any productive acknowledgement.
@@Hermitthecog So zero Solidarity, huh?
I joined your Circle group last week and it is the first autistic group I’ve ever given myself permission to join and I can’t thank you and the community you have on there enough for the support and the help they have been for me in just this past week. I am also very much a silent struggler and I feel like I’m finally beginning to have a voice somewhere and it’s a really emotional and beautiful thing to experience. So thank you, Taylor, for opening that space to all of us and allowing me the opportunity to have a voice as an openly autistic person in an authentic way for the first time in my life. I can’t express or explain my gratitude or how genuinely life changing it has been for me enough. Thank you for giving me the space to feel heard for the first time in my life.
I relate to a lot of your experiences, and so many more. I am also female, late diagnosed ASD-Level 1.
-being valued and listened to.
-not showing the expected emotions.
I struggle with feeling lonely or left out. And I really enjoy when someone is actually listening to me instead of treating me like an annoyance.
I am glad you are real and have this podcast that our "subtype" can learn from and relate to!
Thank you!
I hear you, and I see you. You have put into words those thoughts that I've had myself, scattered and unstrung, and which have only recently hung together just so.Thanks for putting yourself out there to model the sense of normalcy we all need. I want to reach back and assure you the way you've done it for us: it's real, it sucks, it's scary in new and unsettling ways. And though we pick up skills and confidence, we also know that there will always be ways for this to repeat the way or another. I'm on the downslope these days, a little like you are, so I'm glad I saw this at the moment I did, it's what I've needed lately without knowing it. I'm sending you hugs, or whatever it is that comforts you.
And back into the breach we go...
I had to pause to write this down:
The "why" behind your stories seems pretty clear to me: we blend in. We've learned through blood, sweat, and tears over our formative years (especially for the late-diagnosed crowd) that blending in = survival. Sticking out = suffering. We've trained ourselves to the point where it's automatic - blend in or face the consequences. No wonder we can't get our needs out into the open in a way other people understand; that would mean standing out, and that muscle atrophied looong ago.
It turns out that neurotypical people are able to bounce back and forth between blending in and standing out - some are even blissfully unaware that this gradient even exists! They just do what they do and it all works out. For us, it's a manual choice. Unfortunately, when the choice is between the indomitable strength of blending in or the wispy wrinkle of standing out, we're going to go for what's worked throughout our whole life 100/100 times.
Edit: yup I think that was it
Well said!!!
Yes!
Thank you for sharing! I cried through most of this video because not being heard hits so close to home for me. Whether it's being constantly talked over by others, or not being taken seriously at the doctors office, etc, it seems like unless I put on a big show/mask heavily, my words fall on deaf ears. At times, I feel like I am just bothering those around me when I need support, as they are so busy with their lives (which I totally understand, because I can be that way as well) and tend to just stay quiet. It can be a lonely place and I remind myself that the only one that can really help me is me, but that can be sketchy AF haha! I have been doing some inner-child work over the years, and try to "re-parent" myself where I can, which helps some, but lots of things are still a struggle (we don't know what we don't know after all!). As I learn about ASD/ADHD and go through the diagnosis process, it helps to know I am really not alone in this beautiful messy existence. 🥰
"I am doing what I can for all of us." I love that.
As a child I was alone, didn't know how to make contact with other children, my mother had to force me. Felt different. Terrified of loud noises and large objects. I screamed and covered my ears and eyes. Hated going to the toilet resulting in "accidents". As an adult, I find it hard to make friends, get burned out at all workplaces, can't handle loud noises and smells, avoid social events and if I have to participate I fake a different personality. I hate the social game and small talk, don´t understand It, feel scared of people, but I have developed an ability to participate.
I have strict routines that I don't deviate from, I can't spend time with someone who is unpredictable. Extremely hard to learn new things, I feel stupid. I play roles in all contexts except with my partner, he thinks I'm complicated and odd, but he understands.. I love spending time alone or with my cat. I have a vivid imagination and read a lot, love to learn about airplanes. I smell scents like no one else does, I hate clothes against my skin and the list goes on and on.. I don't have a diagnosis, I´m 43 years old💡
I'm late diagnosed autistic and ADHD in my early 40s with hyper-empathy and hypersensitivity, and I experience all of this and more, too. I was in the learning development program in elementary school. Never told I was autistic but how the fuck did my parents not notice?! My sister was in gifted program but I was non-verbal. My birth mother and father were born autistic and ADHD. But my sister was higher functioning ASD. I had to be speech therapy. Also, PMDD is 90% for autistic girls and women. My oldest oldest started puberty early and so did my sister.
@@Selene_Antonia Thanks for the reply. It feels good to know that there are others like me. Although of course I don't want others to have to struggle like that with life. My parents probably noticed that I was different as my sister was completely "normal". I didn't know PMDD was so common among autistics. thanks for the information🙏
I lived a full book worthy life, trust me !! I’m glad I’m old though. My life is so calm, so simple, so blissfully MY OWN !! Do I isolate like a motherfucker ?? Yes I do !! But I get out in the world and interact with others 3 days a week or more. The rest is quiet time just for me. The STRUGGLES !!! They’re finished, thank god. I never have to worry about trying to work again, I’m on Social Security now. I’m just chilling and LOVING it.
Yes to so many things in this video.
I have crohn's and chronic migraines. Completely hidden illnesses that affect my every single day.
Yes, to not being able to emote in a way that will make people understand. For the most part, excited, mad, happy, calm, sad, all looks and sounds the same. You have to reaaally know me to be able to tell what I'm feeling (shout out to my husband).
YES, to trying to help my daughter navigate social situations when I don't know how to navigate them myself. Trying to balance her emotions, my emotions, what happened, her perceptions of what happened, and what the right response is. It's. Exhausting. And I feel so lacking so much of the time.
"I do really struggle. But a lot of times it's a quiet struggle." That. That hit deep. Yes.
ever seen a ghost?
I haven't watched a ton of videos on autism, but once I started, the ball dropped. Not diagnosed (thinking about talking to the doc though), but on reflection I see this is what I've been struggling with all my life. This video is one of the most valuable videos **on any topic** that I've ever watched on RUclips❤❤❤❤
PS I've sometimes been unheard, and definitely sometimes been unseen - I was standing in a circle with other adult students after a night-school class, and they were all chit-chatting amongst each other (which for me is immediately alien territory). I chimed in in the discussion and literally people jumped like "where the hell did she come from??" It was a strange moment. I will never forget it.
Your daughter is lucky to have you as a mother. I'm from the generation where "adults are adults and children are children, and never the twain shall meet." I had lovely parents, but it was just different times. I had weird s~~t go on at school or in my life but, it would never have occurred to me to talk to my parents.
I resonate with a lot of this. In friendships, family, work and trying to find relationships.
Thank you for continuing to unmask in front of us all. You're one of the bravest people I've encountered on youtube. So Real.
I hear you.
I am you.
I support you.
🙏🏼💓🌈
This is what set us on the road to homeschool. When my eldest was 3yo he attended a preschool 5 hours a week. He was undiagnosed and the other kids were bullying him. When I tried to advocate for him, the teacher said “this is how he will learn”. I saw then that I would be forever having to set myself on fire to advocate for my kids for the rest of their time in the school system. And I knew I couldn’t do that for the next 18ish years. And so homeschool was a proactive way of creating a safe environment for my kids, rather than have to react and fight the battles that would come..
Thank you, thank you, thank you. One part specially hit home. As a child I was constantly wondering how the other children knew the right thing to say in a situation. I was like, "How did they do that?!" Again, thank you. You make a difference.
Amy Grant has a song that I felt so deeply as a child. It starts out, “Some people always know the right thing to say, I don’t really think I was born that way. And with the gift of charm they’re well endowed, I love to watch them float right through a crowd.” YUP!
So relatable ❤
Thanks for your openness and sharing. Self diagnosed here, 47, just, learning, doing, and dealing with life. I felt and got a lot of what you noted here and I've been going through so much the last year, especially the last few months. Hmm, maybe it's demand avoidance that kept me from joining the community earlier (haha, 'Don't tell me what to do! You're not the boss of me! : D), but I've joined today and look forward to contributing, sharing, and growing with you and everyone else in the group when the giving and sharing is open and available. Thanks, Taylor, for everything you're doing and sharing. You've already helped me think, laugh, cry, and understand what the heck this crazy world, including our individual place is in it is all about and how to better travel through it!
Oh, you mentioned you're a Cancer, nice, the most emotional / empathic of the zodiac in my, and my teacher's book. I'm an Aries and I have a, hmm, let's say journeyman understanding and respect for Astrology. That's me, all A's: Adam Austin, Aries, Astrologer, Autistic, Anarchist, Author, (Artist) living in Arizona =)
Thanks for this. Despite being a dude, the labor story was super relatable. So difficult to get taken seriously until its too late or almost too late. Nearly died of heart issues because people around me acted as if i just had a cold.
Yikes, that is scary. Maybe we need an emergency whistle or something. I would hate to blow the whistle, though, because my words would almost certainly fly away when I actually did get attention.
Thank you !!
THIS. yes, I so relate. One story among countless stands out in my mind. I was on a team & we were doing an obstacle course race type thing - there were multiple teams & we were all completing different challenges & tasks, which also involved hiking & such. There was one challenge where you had to light a fire & the fire had to get tall enough to be able to burn the twine above. All the team members on my team were scrambling, raising voices, demanding to try it their way. I kept trying to voice that I really felt like I could do it & I wanted to try. But I wasn't as loud as them & wasn't as demanding as they were. After four failed attempts to have them let me give it a try, I gave up. Finally, they all gave up. They all kinda backed away & I said "okay, now I would like to have a turn." Literally, within a matter of a minute, I had the fire lit. I knew I was able to do it & I did it. No one said a word... they all just scrambled back towards the flame, no longer room for me, & they tried to coax the flame higher & higher. No one said thank you. No one even acknowledged the part I played. It was almost as if I wasn't even there. Still to this day, all these years later, I can remember how that felt. It's a feeling I've felt countless times in all sorts of situations, all throughout my life. There's tension in being thankful I'm not alone & also hating that there are others who know very well what that feels like.
I know exactly what you are talking about! I've been in group classes where the instructor gives a task and everyone works alone. I'm the first to complete the task, but the instructor never notices. Just walks around and announces and congratulations every single person in the class as they finish... EXCEPT ME! As I've gotten older I've started announcing myself when no one notices. I might say "Hey, I did it!!! YAY ME!" Then everyone thinks I'm just really weird...
Thank you so much for this video. I'm going through some crap myself and listening has been so helpful. I love what you're doing and never change. ❤
Taylor, totally relate to everything you say. Thanks so much for everything you share. Diagnosed at 62 last year, a host of autoimmune illnesses, recurrent infections, gastro issues and food sensitivities since childhood (T1D, M.E., Fibro, shingles, heart arrhythmias etc). Periodic health crashes which now looking back seem suspiciously like repeated autistic burnouts. The delayed processing, the not being heard, the gaslighting and minimising own needs - thank you for being vulnerable and voicing struggles so many of us face daily and reminding us we're not alone. ❤
I'm so with you... I hate the way people are always downplaying ADHD and Autism, and now it seems like everyone is tyring to claim it. It's maddening.
Now we're talking, Tay. As many unedited, raw talks as you are inspired to do are very appreciated. And your new plan for scheduling your classes is just great. And your passion/enthusiasm comes through without the over-the-top "RUclips Song & Dance." Trust it. Also your autistic Momming of your autistic 4th grader AND figuring out how to navigate school culture/power systems as a parent is soooooo valuable for all of us. Beautiful work.
People are either high or low energy. I’m normally high, but sometimes my social anxiety &/or depression deplete my spoons, & even the concept of faking a smile is exhausting.
I can’t imagine how frustrating it would be if that were my barrier to being heard 🫂
Thank you! When you speak so authentically like this, it clears my head and makes me feel like trying harder.
Glad it is helpful to you. Thanks for your comment.
You are an elegant person bringing forth a quality discourse. Drama is useless and tiring. Learning to assert ourselves is valuable and it doesn't have to be dramatic. I am an autistic 66 year old woman who figured out 10 years ago that there was terminology for my quirky and odd personality. I spent most of my life working around the planet, feeling comfortable and doing well in other societies and, only recently, realized that a big part of it was that ,in a different culture, no one expects you to fit in. Listening to you has made me feel more peaceful in this American culture. Thank you.
46yr old late diagnosed here. I totally understand this. ❤
Keep doing what you are doing, and know you have experiences to share with the world. No regrets or remorse. You are our sunshine and light and love.
Omg, this is exactly my conclusion about why I'm not heard or why I'm misunderstood all the time or even disbelieved! Thank you for talking about this.
u are so brave for doing this. i’m still unable to process traumas that happened over a year ago so i know it’s difficult. i really respect you for this! ❤ also, i rlly relate to u on the anxiety of having health problems during education and trying to navigate that. before getting a surgery in 2020 (i was around 12), i had scoliosis so i would have to wear a back brace to school and while i slept pretty much al throughout my childhood. it was very stressful trying to participate in gym and trying to hide the fact that i was wearing a brace. it’s nice to see someone who relates to that… makes me feel less alone.
Yes. Yes. Yes. At the beginning of my relationship with my ex-husband, I explained to him that up until then, people hadn't heard me unless I broke down or fell apart, and I really wanted this relationship to be different. It didn't work out that way, but I was aware of this. When I say something, I mean it, and it's important. If I say this is too much for me, or I'm in pain (I have auto-immune chronic things too), or this doesn't feel right, I mean it. And I don't want to have to create drama for it to be important.
Lately, I've also been thinking of simply going unedited (and live?) on my channel because I feel that pressure of putting on an energy that is sometimes (not always) not true of the moment. But because my message is important and I want it to be heard, I feel I need to. I'm not done thinking about this!
I also can totally relate with my insights and ideas being used by other people who then take credit for it.
Thanks for this video.
Thank you for sharing.
I enjoyed the unedited video format. You are heard and your feelings are valid. Very relatable. Hugs!
A Quiet Bleeding was felt deep inside me. Thank you for sharing and being vulnerable for us. You are helpful.
My daughter is almost 7 and we can not figure out what is going on with the social situations at school a lot of the time. Motherhood is so hard.
Thank you❤❤❤❤
25:47 I think it’s bogus for people to say that. You’re here to speak largely to the lower support need community. The only time I could understand that complaint is if there are specific support groups or specific school meeting etc aimed at high support needs autistics and a lower support needs autistic was dominating the conversation and not allowing the others to speak. Otherwise, I think it’s just projection or something from PARENTS of high support needs autistic children that say this because they consider themselves warriors or martyrs against autism, so anyone that puts doubt to that narrative has to be shut up, or it would make them have to examine their whole worldview, which they absolutely do not want to do.
Great talk!😁
I am so thankful for your content!! Without your videos, I would never have explored an autism diagnosis for myself (just diagnosed in April). Please don’t lose sight of all the good you’re doing for people like me. Low-support needs and late-diagnosed folks are still in need of community and support. Truly, thank you for putting yourself out there and doing all that you do! You totally inspire me. ❤
Thank you - I absolutely concur with this. I have felt unheard all my life, to the point of feeling invisible... very painful. I don't want to be artificially animated - it's exhausting and unnatural. I don't like it in others either. Quiet, calm narration is just so much better.
I completely and totally get it with not feeling I have a powerful enough voice, if feeling unheard and/or ignored. It feels really invaliditing, embarrassing, and frustrating.
I hear you and everyone who responds here, and I so love this community because we're all so real and helpful and belong.
when youre so used to survival mode throughout your lifetime as an undiagnosed autistic, its like trying to fundamentally change your beliefs to then suddenly be able to/comfortable with the whole display of emotions and social skills that are required so often. aka, it will be almost impossible to perform physical or emotional pain in a way thats not natural to you. i feel this too, and it often seems like im setting myself on fire just to be heard. i wish you didnt have to perform these things and could just experience them the way that feels natural, but theres no alternate autistic society yet where we can just be and be seen and heard. ♡ hoping something changes in the world for us
I've had life long chronic illness, seeing 4 medical professionals this week alone. I'm pretty sure I'm going into perimenopause and I'm only 38. People don't understand how exhausting it all is.
You're such a precious soul ❣️🤗 Thanks so very much for doing this !! 🙏🙏🙏
Your voice and the way you speak so calmly (like myself 😊), gives me comfort and calms my anxiety, when I feel lost in this world.
Hearing about your experiences helps me learn more about myself, while I am still waiting for my assessment. Only 3 weeks more until the first interview, not that I need others to tell me, but for my kids sake I think it is important.
I’m 47 and my oldest daughter of 13 just got her Asperger’s diagnose, that is why I got the notion that it fits me as well.
But hearing your struggles with your kid, resonates so hard, with my own 2 daughters of 10 and 13 and what they struggle with in their social lives.
I also have trouble finding my time to say stuff in these meetings, I feel like nobody is seeing me, or they do and think why is he not saying something?
So believe me you are heard and felt, by those that need to hear you 🥰.
And this raw view of you, makes it so much more real and connecting. Your courage to do it, still knowing there are voices that will speak badly of it, is so impressive. I can’t find the words to describe what I think of that, but bravo 😊
Thank you for this!! You are not alone ❤
Thank you so much for sharing your struggles, you have been an enormous help to me.. You put into words things that I have a hard time expressing correctly .I have always felt like the most misunderstood person in the world. maybe what I have said has really not been heard at all. i am 73 years old and have only realized that I am autistic for a couple of years.. So much of my life now makes sense to me.
Thank you.
Thank you for being brave and vulnerable here. It helps.
(TW, anger at medical system)
I’m wrestling with similar anger rn. I’m dealing with health issues related to immune system/inflammation etc etc etc, and so angry and grief filled that ALL of my diagnoses (AuDHD and medical) have happened in the last 6 years (I’m 55), and they are ALL conditions I had for my entire life that gradually got more and more problematic. And I couldn’t get a professional to really listen and help despite literally DECADES of trying. I didn’t know the game rules of how to get the system to respond. But WHY is it a game with rules?? Why couldn’t I say it and be heard and believed?! Why do we have to Prove ourselves? And now my body is metaphorically a multi system small fire, and it didn’t have to be… And I need better ways to help my now-young-adult kids for when their bodies start being more problematic.
Taylor, it’s so comforting to be here where others go through this too. Your Voice Helps Us.💫
12:55 I say that too sometimes, “I feel so autistic right now.” When it’s emotional, when you’re filtering fast, processing with all your will, rehearsing and memorizing to hit all the key points… GAAAAHHHHHH!!!
“What are they wanting from me” is such a difficult question sometimes. But “should haves” are too big to beat ourselves up with…
I think we get so used to trying to present as calm and sane, and so used to gaslighting ourselves, that we don’t know how to strongly communicate when something is very wrong.
I’m sorry you’re going through so much right now, it’s especially worse when it’s for our kids. You’re not alone either 💜💖Sending hugs and/or lots of positive vibes ✨
I really resonated with how you described not being heard and feeling like you have to be externally loud to be believed. Im not someone who shows how im feeling on the inside externally very well and i dont know how to without feeling like im being dramatic which then leads me to gaslighting myself because im pretending with my actions even though the feelings im expressing are legitimate. Its such a frustrating feeling, especially when you need help or medical attention and your words arent enough. Acting out of whats natural to you is also just impacting you mentally and there just doesnt seem to be a simple, straightforward way to express your needs and be responded to adequately.
I also love the 'real' videos. Its a different kind of real to your edited and scripted videos and i get what you mean by how this kind of realness hits different. The same way that people dressed up for a formal event are still being their real selves for that setting, but they have other real selves for different settings that all have slightly different vibes.
Anyway, thank you for posting this video and doing everything you do
I am also this way with most new situations. Doctors appointments are so hard for me to navigate, especially bc it's a one on one with direct attention and focus and eye contact and slow processing.
And the slow bleed thing is such a good description. Thanks for letting us in.
Your empathy, which is a beautiful quality, leads you to come across as apologetic. Trying to take everyone’s perspective into account leaves you vulnerable to those who use forcefulness to gain control of others and situations. You don’t have to come in to a situation “guns blazing” or angry. You just need to be clear and firm. Decide ahead of time what you will and won’t accept and stick to it. Write it down if you need to. You have really great instincts, but you feel so much of others’ stuff that it can cloud your ability to think clearly. Try to shift your perspective from trying to take everyone else’s needs into account to trying just to be clear about your own perspective. Genuine people will appreciate knowing where you stand and what your boundaries are so they can deal effectively with you without the frustration of trying to guess where you stand. You are such a strong woman. It’s ok to hold yourself and your family first. I am truly holding best wishes and hope for you and your daughter to get through this. My daughter went through a really rough time in school around that same age. It was TOUGH to see her so hurt. She is 35 now and has her own family. We are pretty sure her oldest daughter is on the spectrum and will be starting kindergarten next year. Mom is grappling with lots of questions about putting her through testing and creating more stress and possibly stigma for her. Your channel has been so helpful and comforting. Heartfelt thank you ♥️
sometimes fun videos are not what we need to see. there is a shortage of videos like this. so thankyou :)
one autistic is not more important than another, that includes needs. we all just need to remember that.
I have recently decided to not go back to the local medical center. I have been gaslit and it has been made clear to me that they don't care one little bit about me. Medical negligence has led to four months of illness severe enough that I can't work --- and this negligence was noted and brought to attention and challenged multiple times. NO response whatsoever. I've got a new little doc who is now doing mop up for his cohorts with me, but despite his efforts he as only 15 minutes with each patient and is constantly forgetting why I am there and insulting my intelligence by treating me like whatever patient came before me, forgetting who I am, repeating the misdiagnosis made earlier (and so I have to correct him) and I start to get really, really angry and that makes me exhausted for two days. So . . . yeah, I get it.
Go to alternative therapies like Accupuncture and chiropractic! They are a must! And these sweet people tend to actually listen!
I relate. They've almost killed me twice, but my entire life is filled with terrible experiences from these psychopathic medical cretins. It's exhausting, frustrating and traumatizing. Try to float.
@@JohnTheRevelator11 Yep, have always done that. My late mother was an RN and a licensed nutritionist who studied natural medicine all her life, my niece is a newly minted nutritionist, my other niece is a somatic therapist and I too have studied all three of these fields (personal study, no intent to become licensed). However, I live in a very remote, rural place and we only just got our first naturopath -- who I am obviously seeing. But . . . America . . . medicaid/medicare doesn't cover my naturopath or my acupuncturist or the very talented physical therapist (he doesn't bill them) or nutritionists or somatic therapy or . . . you know.
I don't know if I am autistic but have always been quiet/ introverted and relate so much to the frustration that this world is built around who shouts the loudest wins. It's just not a fair way to treat people.
I'm so glad to have found you! I'll be catching up on all videos and 99% of what you list, say, and describe is stuff I fully resonate with. Thank you!
Not a mother part but this is exactly how my life has been going for years and it doesn’t seem to matter even when at extremes.
You are a lovely human.
Your honesty is appreciated. This all resonates. I was diagnosised adhd at age 46 and autism at and autism at 57. I was also married to a man for 23 years that was a passive aggressive covert narcissist. A lot is coming out.
Regarding those saying that your voice is talking over those who need more support: bullfuckingshit
I am less adept at masking and therefore higher needs than you. I don't have a channel or other platform. Because I couldn't speak from it if I did. RUclips channels are literally free.
Your voice helps me. I use the things I learn from you and other creators to know what help I should be asking for. What names and terms to use to get my meaning across.
You take nothing from me. You cast no shade over me. Those who say otherwise are trying to emotionally manipulate you into silencing yourself - because they are uncomfortable with your message and don't want to hear it. And are not satisfied with just watching something else instead, but want to make it so that no one else can hear you either.
I couldn't agree more. In this well-thought-out and well-written response, you've covered many of the things I was trying to find the right words for. Thank you.
Thank you
This has affected me to my core lately. People solely interpret me by the tone of my voice and my demeanor/intensity... no one hears what I am actually saying or trying to convey. This works in two ways. The way you are describing, and also, because I am very passionate and can get caught up in the subject matter, people think I'm being dramatic or losing my mind about something, when I am literally just talking about it. The end result is always the same, I am just dismissed. And I empathize so badly with not being grounded in the ability to assert yourself, or structure your own communication in a way that neurotypicals will view as fitting. I feel like a different species.
I’ve felt this exact same feeling so many times. It’s like… it’s already hard for me to express my emotions and feelings, so when I do I really need to be heard… and often people downplay it or don’t fully believe it as I haven’t “made a big deal about it” and it makes me want to do it even less, like a cycle that never ends. It leaves a scar every time
Oh and I had the same experience when in labour. Birthed 3 kids and in all situations midwives didn’t believe how close I was to delivering as I wasn’t making a scene. For my third it was a very tricky delivery and 1st epidural didn’t work and I only “realised” as I was about to deliver as they kept asking if I was feeling pain or pressure and in my mind I am just making bullet points about how to differentiate between the 2 while having full blown contractions
I think it's difficult for us to help other autistic people to navigate because that's our issue. We just communicate differently, see the world differently. It's difficult to know what to do when dealing with neurotypicals. Big hugs.
THIS IS WHAT WE WANT. I am too unedited. I look totally crazy in some of my videos but it actually me. I was called crazy and weirdo growing up, which I a really took as a compliment.
This has been me. while I don't have kids to defend, I've had to defend myself at work whenever someone complains about something I've done that was Autistic (hyperfocus, being to the point which they thought was rude). I've had leaders I told about my diagnosis who responded with "I still don't know what that means" after I've had to remind them for the umpteenth time. It's so frustrating and exhausting. Thank you for sharing your struggle and making me feel less alone.
And not to mention that the social dynamics are always changing with new generations
I remember being in fourth grade and feeling lost, out of place, scared, and just straight confused everyday. I just didn't know what to do with the other kids. It was like they all changed over the summer. I had two friends. One didn't like me any more and the other one would play with me sometimes. They were all breaking up into groups and I couldn't be in any of them. I couldn't tolerate teasing. It was awful. I didn't have a diagnosis everyone just thought I "had mental problems" or was a discipline case. So I feel for your daughter. She has something I didn't have. A mother to go to bat for her and a diagnosis to point to. You stood up for your daughter and when you struggled you aught help and support. To me that is incredible. I am in awe of you. I hope you realize how amazing you are. Also, having that diagnosis helps in many ways. When you first started talking about the situation, I thought was this is why I don't have kids. How could I take care of them? How would I be able to deal with situations like that. By the end I was thinking maybe I could do that.
Yes the teasing! I hope this doesn't sound weird but I'm a 5'4" man working with cars and I don't know what to do with teasing or ball busting. I know I'll come off too "sensitive" if I say anything but I also don't know what to respond with so they call me quiet and it's like I don't know what to talk to about with my coworkers and it's just so frustrating they have this view of me and it's not me but I don't want them to know me as well out of fear.
I don’t know if I have ever heard anyone else express so perfectly exactly how I felt the first 40 or so years of my life about dealing with most situations regarding speaking to almost anyone. I’m now in my early 50’s. And I’ve had more experiences where because I wasn’t even aware I was autistic at the time, but instead I was simply working on developing all parts of me, I determined I’d be more assertive in expressing myself. I’ve had to confront people both hardly known as well as those in closer relationships to me. And I know this. People who WANT TO HEAR YOU, they will listen. People who want to prove a point, can’t listen. Determine whom you are speaking to and you will know whether or not you are wasting your time. And in answer to your question, yes, Taylor, sometimes you DO HAVE TO LIGHT YOURSELF ON FIRE SO TO SPEAK. You have to decide that you are important enough to CLAIM ENOUGH SPACE AND ATTENTION that a fire would require from other people in the moment that you require some assistance. If you’re having a mini-crisis without physical harm having happened to you, you can ask someone for emotional support right now. That’s why you have your best friend on speed dial, isn’t it? But if you don’t know how to put yourself first, then no one else is going to know that you need to be put first in the line. Claim first when you need to. Otherwise you become a martyr. And as for anyone who tells you that you are speaking “louder” than others who can’t say anything, what nonsense! First of all, those people simply do not know if this is the case. Are they inside of every other person’s internal experience? You cannot replace or “take up” someone else’s space here on this planet. Other autistic people, regardless of their level of need, will determine for themselves in their own way and time, how to either speak up or not for themselves regardless of what you do or say in your lifetime. And you shrinking away in the shade serves NO ONE. Having the courage to stand up for your children, yourself and other autistic people (whether we are considered high functioning or whatever other label we are given) - is your sovereign, god-given right as a human being. You choose. You elect to serve others with your voice. It’s a powerful, clear voice. You’re using it wisely. Other people who throw out shame like this are projecting their own powerlessness, guilt and shame for not doing more onto you. They are blaming circumstances outside of themselves and you are an easy target due to your empathy. I experienced the same thing when I was your age. You’ve got to claim your own power. It’s there. I see it whenever I have come here to get some good information. I do not allow other people to do this to me anymore. When I hear nonsense like this, I call it nonsense. How could your videos be blocking anyone from getting help? The person accusing you of this is angry, jealous, frustrated and you are being asked to stand up for yourself the same way you would do for one of your children. It took me so long to defend myself to the same degree that I did for either of my kids who are now grown. Why? Didn’t I deserve just as much protection as the two of them? And if I hadn’t been protected, WHO WOULD BE THERE FOR THEM?! Be sure you remember that when it comes to your kids. You can’t protect them if you don’t claim what you need for yourself.
I completely and totally get it with not feeling I have a powerful enough voice, if feeling unheard and/or ignored. It feels really invaliditing, embarrassing, and frustrating.