Should you share your autism diagnosis? What if they invalidate or gaslight you?
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- เผยแพร่เมื่อ 30 มิ.ย. 2024
- Should you share your autism diagnosis? What if they invalidate or gaslight you? #autism #latediagnosedautistic #autisticmom #momonthespectrum #audhd #autismdiagnosis
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How did/do they treat you without the diagnois? If they've always treated you like crap for the way you are, it's not going to make a bit of difference. If someone can stand there, while you're crying and shaking, begging to be allow to leave an event, and shame you for not fighting your 'social anxiety' to stay there... then they're a narcissist and the very last thing you want to do is give them that information. They'd turn it against you in a heartbeat. Judge your audience, especially if they're already judgmental of you.
I kind of agree with this but it's important to learn how to manage this kind of stress (assuming anyone with autism can do it, which is probably not true) but there are ways to introduce this properly.
@Catbehindthecurtain Excellent point ❤
@@vitordelimaImagine you are in a room packed with loud people dancing to heavy rock music, bumping into you regularly, with bright strobe lights flashing in your eyes randomly, while smelling the heavy aroma of skunk roadkill and being given a vaccination at random intervals to random parts of your body every minute or two. How long could you last before cracking? This isn’t “stress”; it’s torture. Autistic people are easily overwhelmed by sensory inputs of all kinds, though precisely which kinds vary from autistic to autistic; and it isn’t something we can “get used to” from repeated exposure, either. The only solution is to minimize exposure.
@@misspat7555 With some training you can dissociate and stay there for a long time. Learning this is similar to developing a new mental illness but if you need a higher degree of autonomy it's important.
@@vitordelima telling a stranger on the Internet to dissociate in order to deal with traumatized autism is terrible advice. We need to be in our bodies and have the right to agency over our bodies. If that means leaving a loud obnoxious barbecue or event then so be it.
I would suggest not sharing with anyone significantly older, like parents, or anyone who can't or won't use the information to help you. Sharing to coworkers, parents, and acquaintances for the sake of sharing gives you that short-term dopamine hit, then you will regret oversharing to people who may respect you less in return. I've heard everything from "There's nothing wrong with you, you're just smart" to "You don't look autistic." You may have just had your entire life flipped upside down, but to everyone else it's Tuesday.
🤍
In my family apparently only boys can be in the spectrum.
But I have zero doubt about my diagnosis.
I appreciate this video, Taylor. Thank you for being such an insightful promoter for us autists.
I don’t share my diagnosis with most people. Those who happen to mention to me that they are neurodivergent receive my positive feedback.
Any topic of conversation about neurodivergence may encourage me to talk about my diagnosis.
My late diagnosis at 80 HAS made a significant impact on how I see myself. I recognize that many of my sensitivities and health issues are not just due to childhood abuse, but are directly influenced by my neurodivergence. Much of my life contained efforts to deal with processing challenges.
The fact that I found ways that worked for me, astonishes me, as I had no “accommodations” in education or work situations.
So many things make sense now!
I connect so much with your comment, thank you. I am just now realizing that I have autism, and blamed much of my struggles and problems on emotional abuse received as a child, and never knew why I couldn’t get past it. I’m 70. And now I can finally feel proud of my coping, instead of shame for not being able to put it behind me and get over it.
@@randicatt13
Yeah.
“Just get over it”, “handle it”, “you think too much”, “what sound/smell/taste are you talking about?” are some of the things I’ve heard in my life, which deny my sensitivities or my processing challenges.
I’m surprised that I lasted in several of my earlier jobs and went 24 years as an educator.
I’m glad to know that you are doing better.
In the beginning I wanted people to know. It made such a huge difference for me to finally understand why I was so different and I felt like I had something to explain. I can't say sharing this information has worked out well in one single case. Not one. I enjoy isolating now more than ever.
Yep, I learned to keep my mouth shut too. The information has improved my own understanding of life, but very few others will use that information to benefit me.
My sharing my autism diagnosis with my family resulted in them gaslighting and attacking me and cutting me off because they have very ableist views. So now I have no friends, no family and no support from social care. So much for my diagnosis improving my life and helping me to access support in order to actually have a life. There is no support for autistic adults in the UK unless you have the highest support needs and learning disabilities.
Hate to hear that. Mine cut me off too.
same happened to me here in the US sadly
I fear my family would do the same. 😢 It is so sad to see how easily family would cut off for this reason.
Same in Belgium, an autistic person without intellectual disability is as if they were not autistic at all... and must do everything as if they were not. Same with the rest... no friends, no family, nothing... But at this point, it's okay. It's better like this than being with human predators like narcissists.
I relate to this, family gaslit me too and I'm done with it, can't do it anymore. I cannot stand the fools who keep saying people want autism diagnosis to get stuff. What stuff? First of all, if one is autistic then they are autistic, whether they got a diagnosis or not. I'm diagnosed and I work for a healthcare company - you'd think that would be the best type of employer for understanding autism and accommodations. Nope. Their HR dept doesn't even include me in discussion! They didn't even talk to my providers. No it's a bunch of HR people and some "employee health" nurse who never include me instead making decisions about me. My accommodation doesn't even make sense to my deficits, but it covers the employers butt I guess. They can go oh we did our legal part. That's all that has mattered, the employer covering their ass. No inclusion, no understanding, I'm still struggling at work, and yeah there is NOTHING else to help. I'm in the US too and autism is on the DOL and ADA but there is literally no help. I'm expected to perform the same as someone who isn't autistic. This employer didn't even talk to my providers. They have the forms but that's it. Employer totally cut me out of my own accommodation case. There is no help. And many of us have families that are not like a family so there you go. There is no glory being autistic and anyone saying crap like that had never known an autistic person.
I know this is going to sound crazy. Back in 2018 I shared my diagnosis with my birth family and adult nephew. I have struggled terribly in life, realized being neurodivergent was why, and thought that it would help them understand me. My oldest sister actually worked with autistic children at a public school, and denied that I was autistic because I wasn’t like the nonverbal kids she’d seen. How intelligent of her 🙄. They believe my difficulties are from me being “no good” or defective. Things worsened over time, and now I have been completely cut off by them. I had a heart attack 4 months ago, and they never contacted me. Well, my mom did eventually, but it was literally to complain about me.
Doesn't sound crazy to me. I've heard and read this same story many times, from people all over the world. I'm sorry that you had that experience.
I'm sorry, that sounds terrible. I hope you're doing well regardless ❤
I will never understand how people could treat someone this way.
😞it's take a lot of courage and strength for ourselves. You are obviously (strong and brave)
@@chloe-sunshine7Honestly, this is nothing compared to some stories I’m aware of! Not to belittle this persons experience in ANY Way! It’s just that human beings can really go below ANY bar you set, no matter how low it is! We can be truly despicable and evil! 😢
I find it's best to share _symptoms_ not diagnosis. Remember that _for you_ an autism diagnosis brings a sense of _belonging_ but for them, _it definitely won't._
At most, I'll excuse myself as "a bit on the nerdy side," which people are more prone to understand and identify with.
"Autism" comes with a whole host of misunderstanding and bias.
Another fantastic video, thank you.❤
I like this and I am going to borrow your approach. I made the mistake of telling my manager in my new role that I am newly diagnosed autistic and ever since, he has treated me as if I am stupid and incapable. I thought he would have an understanding of the struggles of autistic people (as we work in a related field), but he clearly doesn't. Thank you for sharing your experience.
Very well said. One of the first things I did when I learned I was autistic was to start sharing that news with almost anyone who would listen! I know, not exactly the right thing to do. But I was so excited because it had made such a difference to me in my life explaining why I am the way I am, I just wanted to tell the story over and over. But, yea, I don't anymore.
I feel literally the opposite. I'm terrified to tell anyone. I feel like they won't understand, and they'll be too infantilizing
Oversharing is a classic autistic trait.
@@chloe-sunshine7 I was in my mid 50s when I learned I was autistic and in a stage of life where I pretty much didn't care anymore what people thought of me. 😆 But it also does get tiring with me when dealing with those people who don't understand or belittle you for it.🙄
I just found out last year that I'm an high functioning autistic. I told several people, and they don't believe it because I've learned to mask so well. I'm 70 years old. My brother poo-poohed the whole idea. That's okay; my brother's never treated me very nice to begin with. I don't expect finding out I'm autistic to outwardly change anything in my life. But it helps me to understand why I behave or feel certain things in different situations. It also explains to me why I was treated so poorly by my family growing up and why I was so socially awkward.
Share it if you want to. I never thought my family would invalidate my experience, but they did. Don't have that family anymore, but was that family worth having?
Wise advice. I could never tell my father and step-mother due to their history of invalidating and minimizing my experiences. I said it my partner once who said "no you're not" - Then he worked with a couple of people who are diagnosed and their quirks/experiences and said "you really are" 😂🤷♀️
my counselor suggested to frame it in things I'm sensitive to or need help with, rather than saying autism right away. I think it helps neurotypicals grasp it before we drag them in the weeds with DSM jargon
That’s great advice ❤
Yes, especially if they already have a false preconceived notion about what autism is (and a lot of people still do).
I have recently shared my diagnosis with my mum, son who is 20 and my husband. They were surprised as I masked my struggles so well but they have been very supportive. They are trying to learn and understand but it is alot to take on board as we know ourselves. I am still learning too. I will only tell those closest to me but I have had to tell work as I am needing some allowances, I have asked them to keep it confidential for now, but apart from that I will keep my diagnosis to myself for now as I am processing and learning still.
I just say, "That's one of my autistic (or ADHD) traits" when something naturally comes up with someone. Then they can take it from there or leave it at that and start connecting the dots themselves. 🤷🏼♀️
This works for everything, I learned this lection finally twenty years ago:
If someone doesn't want to understand You can say what You want, it doesn't matter.
It's hard, frustrating, but helps saving spoons.
Sometimes You have to break up with people.
make it a haiku
@@melancholiadementia Pardon?
Yep, now, in my second burnout cycle, I decided doing the same. No more explanations when the other person is not willing to listen properly and still wants me to function her way.
I just recently discovered that it is autistic burnout, and what really causes the exhaustion. So, if I want to prevend the same thing happening in the future again, I just need to put myself first, stop being the nice girl and take care of my spoons.
I always tell it. Doesn't matter how people react, that is their problem and ignorance.
Not with colleagues at work. And with family and friends, it depends on their state of awareness of reality. And knowing that their reactions could be "everybody is a little autistic" or "you can't be autistic because... (fill with whatever)". That would be my advice. And if relatives have abused you before not even to them. They would feel free to abuse you even more.
Yep, made that first mistake and wish I could undo it. Nothing bad happened, but it just wasn't necessary to share something that private to people who don't really know me that well.
I decided to tell my doctor about my autism suspicions. I couldn't believe his response! Apparently I'm too sociable to be autistic and I'm obviously saying it to get a disability pension and the NDIS (here in Australia).
Yep, medical gaslighting: it's a thing. 😢😢😢
Yeah, same here, just not an Aussie.
I've told all my medical providers. Not only do they need to know about me, they need to know about autism for the sake of other people, too.
@@marthamurphy7940 I have been considering my autistic ways for over a decade now and have not done anything about it. I have not told anyone about my thoughts, even though I've had a few comments about it, I have never been diagnosed.
A few months ago, I finally decided that it was time to start making enquiries to, perhaps, get an official diagnosis. Extremely stressful for me.
So... the very first person I tell is my doctor. And the above was his response.
😢
In my experience the worst thing you can tell a doctor is “I think I may have X”. They immediately take offense that you (the patient) feel qualified to diagnose yourself. I’ve literally had residents tell me to not use those words. Residents know. They deal with doctor egos. Instead you’re supposed to flounder around, obliquely hinting until the doctor (hopefully) lands on the the diagnosis you made long ago. This goes for autism but also all other medical issues. It is infuriating but that’s the system our culture has nurtured.
@@SunnySunshineField Ahhh, you're spot-on! How did I not see that? Thank you. ❤ NOW I understand.
But I cannot forgive the injustice... 🥺
Recently, I realized that I have been doing a lot of research on autism, hours, days and months...years. Because I am directly concerned. And because I'm like that, when a subject fascinates me. When I received my diagnosis, at first "the sky opened", finally I had the explanation for everything... and I would be able to explain to others... and they would understand me... But no, absolutely not. For two main reasons: 1. they don't know about autism, and they "don't care" and 2, because most of them don't dig into it... and don't seek more information.. .because they are also like that... in general. In fact, I had "but no, you don't look autistic", or people who started talking to me as if I was deaf, and suddenly deprived of intelligence. I've given up saying I'm autistic, most of the time. But, socially, on my CV for example, I note it, and I stick to it... because it's heavy to be, without having either the right or the legitimacy to do so.
I am exactly the same: it has been one of my special interests for over a decade now (back when it was called high functioning Asperger's). I would read and study and reflect, then put it aside, always going back to scratch at it like a scab that isn't healing... 😂 I find it fascinating!
You're right about how people either don't care or treat you like there's suddenly something very wrong with you. 😮
This is a great topic. It is hard. We can't make people understand sometimes and it's not our job to educate them. I only spend the extra energy getting to educate close family❤
I'm not sure how to speak, if not for the sake of clarity. Maybe I shouldn't because it seems like people do not care about clarity so much.
It really struck a chord for me when you said it seems like people don't care about clarity.
I find that clarity of communication is one of the major deficits among allistic / non-neurodivergent people.
Many people just don't understand that they are not conveying information clearly, and don't respect me or my questions when I show an interest in what they're saying by working to make sure I understand what they mean. It's so frustrating.
Yeah, exactly, everything and nothing has changed!
With some family maybe all I know that I can't because I think she has autism to but has no idea. She's very intelligent with a great job but, could someone be a narcissist and autistic..I've heard this on one of the channels or several. I will sign up v
soon. I told my oldest sister that I think our mother had autism. She had emotional disregulation, what looks like autistic inertia, melt downs etc. We could never understand why and she was never diagnosed with anything. My oldest sister looked kinda surprised and maybe even a little sad thinking about it. Mom did have 5 kids lol that's a lot. I had 3 and it was difficult just folding all of those tiny clothes.
My parents denied my autism diagnosis when I was diagnosed twice as a child. My parents told me growing up those professionals went to a bad school and didn't know what they were talking about. My parents refused to accommodate my needs. My father graduated from one of the best medical schools in the country and still denied my autism diagnosis. Because my family refused to take my diagnosis seriously and get me taken care of I am paying the price for their mistake and going to have to get services as an adult. Another doctor diagnosed me again at 32 and after finding out again I was enraged and I decided I'm going to have to cut off the rest of my family and move on with my life. It's time to heal. I hope none of you ever have to experience this. I decided I'm not going to tell my family that I have autism again because they aren't going to believe me. I don't owe them an explanation. I'm going to move on with my life.
I want to tell and I don’t for this very reason. I know it won’t go well. Especially because I am self-diagnosed and don’t plan to pursue it in an official capacity. But I really want to also vlog about my experiences here on TH-cam. Sigh. I might start another channel that people don’t know. Or not. Haven’t decided. But yeah, my experience is that it rarely goes well when you divulge anything that makes you different, even worse when it’s family and possibly genetic. They could take it extra personal. Humans can really suck. Thanks for being truthful about it.
One reason I often share is to help normalize neurodivergence, especially when there is another ND person around, especially if they are younger, more vulnerable, or have higher support needs than me.
For example, when a child is vocal stimming and maybe the adults are being judgemental or unsure what to think, I'll say something like "I do that too, though always in my head when there are people around. I'm so happy this kid has the freedom to self-soothe the way they need, instead of having to mask around others!"
I was applying for a place for my son (who has autism) in a kids fun gymnastics class. In that situation, I felt it was appropriate to share his diagnosis. They immediately said he couldn’t attend the class as they didn’t have any teachers trained to deal with autism. I doubt they would have even know if I had not told them - they would have just thought he was a bit distracted and quirky. I told them I was shocked they would reject him without even meeting him. They didn’t care. So I left it at that. But THAT sort of thing does not encourage me to share his diagnosis, but sometimes I feel I don’t have a choice but to share 😢 ps I live in Singapore at the moment.
Similar thing happened with me recently, I took this consultancy for my abroad master’s education help. Everything was great until I told them about my autism diagnosis. They straight up ghosted me.
@@NikhilSawantIN I'm sorry that happened to you. Being rejected like that feels terrible. I will never understand why they can't just give us a chance. I mean if we can't do it (and we CAN) they can just say it has not worked out. And most of the time I KNOW they would be pleasantly surprised (maybe even blown away) by what people in this community CAN do.
@@LexMouse I guess It’s because of false stereotype of autism being portrayed in media (for example: Sia’s movie called “Music”). More awareness needs to be spread about the spectrum of autism, people usually imagine the extreme end of it. And they see it as a disorder which I think is completely wrong, they should see it as a “different way of being”.
This is very well said. Thank you ❤
i just dont say anything... 99% of the time people go off on me and invalidate/gaslight...
I had hoped it would keep my family from continuing to exclude me, but now it seems to have gotten worse. I’m in therapy, waiting to get the actual test because I need that validation before I really tell people. Also, in therapy to help me accept that my family doesn’t want me around and that will never change.
Thanks so much Taylor.
Good tips thanks!
Thank you for the video, unfortunately in my country you need someone from your childhood to speak to the assessor in order to get a diagnosis. I haven't asked my parents yet. They are a big part of my life but i can't bring myself to say I'm going through an autism assessment because they have been very dismissive of mental health in the past...my current therapist says i should tell them but I'm not sure...😔
Thank you, I'll take what you say in to account when it's time. Love you videos.
Wise words and while I’d love to share with my parents, based on their reaction to my stance on the vax, it doesn’t bode well.
Maybe I am odd, even for an autistic person, but I once had a suspicion on my autism and I was dismissed totally and so I tried to not think about it anymore. Way later I was sure, I self diagnosed myself, still had doubt, despite me being sure (yep, that happend) and then got my official diagnosis. Now it's like an armour. I tell people and see how they react. For me it's a positive. Since my diagnosis early march, my life had turned around and I feel better than (then?) ever.
In my country, the employer only needs to pay 30% of the salary if they hire a neurodivergent person, and the government pays the rest, so I kind of have to tell them. Fortunately, I don't have to say I'm autistic, just the basic definition, which in here is; "central nervous system disorder which affects neural connections". Some guess what I mean, some don't. Ironically, my employers have been much more understanding and supporting than my family...
All I can say is. Yup.
I shared that with my general doctor and she dismissed me because I make it to my doctor appointments and I'm nothing like her autistic nephew
Generally, there is no point. Only person, who needs to come in terms with your diagnosis, is YOU.
Looking for validation from others is also somewhat meaningless. The only person, whom you need to validate you, is again YOU.
At the same time, the first and most important person in your life, who is supposed to love you, is YOU. And no, it´s not selfish (before you can love anyone else, you need to love yourself). Not narcissistic either (they hate themselves).
At the moment, I'm only self-diagnosed. Sort of officially, from childhood, but it got all convoluted with many misdiagnosis. I've had ABA, OT and all other stuff done to me.
Sometimes I feel weird telling people. I realize, that information, will not be interpreted as it means to me. So, it's almost a moot point sometimes.
I wish I’d seen this video when I got my diagnosis a number of years ago. There are a number of “ Uncle Joe’s” in my husbands family. It was such a letdown telling them. Fortunately, I have my “tribe” and I am so happy about that.
🌟 👉 Download my FREE Ultimate Guide to Understanding Autism here: momonthespectrum.life/guide 🥳
If you do tell, the reactions tell you so much about that person. Its the ultimate Are You An A$$hole test. But this goes for any reveal of a chronic diagnosis that doesn’t have society’s sympathy.
The ableism is strong sadly :/ Problem for me is that once they know and react poorly... what now? Coooool, I have to interact with this person at work after I realize they do not understand me/invalidated me... what a hellscape I walked into? Same for the family, you better hope to never meet that relative ever again because I won't be able to be cordial. They will see it on my face, clear as day, that I'm disappointed in them.
Well, I have a second date coming up with a new guy. I wonder at what point I'll tell him.
Sharing it just makes you look like one of those TikTokers who wants to be autistic because it's 'trendy.' No need to risk anyone gas lighting anyone. We have gas-powered stoves and old-fashioned water heaters for such purposes. No matter how you phrase it, the other person is going to think along the lines of you being a stove or water heater with the pilot light out and feeling as if it is their job to re-ignite your pilot light. Alternatively, if you desire the opposite, you are better off achieving this by singing or playing 'Light My Fire' by The Doors. YMMV. I wish everyone the best with reaching their decision along with their future endeavors.
I hear increasingly how NT people are dismissive of ND diagnoses "everyone is coming out with an 'ism'" . My counter to that is to say I didn't realise the diagnosis was rationed and how does it affect you in any case? It almost sounds like a jealousy as though they want to brag about their own 'special-ness'.
Anyhow, I had an uncle who completely dismissed my diagnosis, but he's always been a jerk so I shouldn't have expected anything different.
Yea because the folks that's for ya are that
Wanting/not Wanting to understand you. Wow
You can't "self-diagnose" a disorder. That's not a real diagnosis. If you need other people to validate your mental health disorder diagnosis, then you need therapy. I would not want anyone knowing I had a disorder and I would do everything possible to overcome the symptoms. I would not want to stick out like a sore thumb. Sharing diagnosis with the world appears to be for attention. These days people WANT disorders to feel special. They identify as their disorder. They identify as "autistic" instead of just being "someone with autism". That's not normal. A disorder is not an identity. If your disorder is your identity, then you need therapy. No one is "autistic". That's not the socially acceptable speech. The socially acceptable way to say it that does not offend, is to say a person "has autism" not that they "are autistic". It's something you have, not something you are. People with autism fought long and hard for many years to be respected by society and no longer be called "autistic" and instead be called "a person with autism". It's a disorder (DIS-order, a lack of order) not an identity. Now suddenly people are back to the old offensive way of referring to people with autism as "autistic". It's incredibly disrespectful. I don't understand why younger people are trying to change the speech that people with autism fought so long and hard for society to respect them and stop calling them their disorder (autistic). Please stop. It's rude. You're confusing people, especially children who are now identifying as their disorder. A disorder is not who you ARE, it's just something you HAVE, and you can get help to overcome your symptoms and live an easier more fulfilling life IF you're willing to put in the hard work and not be lazy and just expect society to cater to your disorder symptoms.
If you have autism/are autistic and this is your perception of autism and society's response to it, of course you are entitled to it. But you must come to terms with the fact that not everyone views things the same way you do. Some people prefer to be called autistic because they do not view it as a disorder, but just a different way of being human. It being "who they are", in that sense, is validating to them and helps alleviate the feeling of being broken/"disordered". This shift in perspective brings a shift in the language they use for themselves and wish others to use in relation to them. Whatever your opinion or view may be, you ought not and cannot prescribe the views or language at other people hold and use about THEIR lives and experiences.
To be honest, if you are autistic you kind of sound like you hate yourself. If you aren't, you kind of sound like a hateful, ignorant, and judgemental person who wishes to ascribe all the struggles autistic people have to "laziness". How awful of you.
Please bear in mind that for many people, for many reasons, a self diagnosis is the only thing available to them. As a case study I invite you to explore the statistics for women diagnosed with autism as adults. The majority whom are eventually diagnosed have had to wait through years of medical gaslighting and ignorance, only to be told that yes, they were in fact autistic all along. If they wait for an official diagnosis they will live for years without the access or understanding that would help them live better lives. Whereas if they self diagnose they can use that understanding to support their wellbeing and improve their relationships and quality of life.
The irony of you saying that people are not capable of determing for themselves if they may be autistic while you are capable of determing that complete strangers need therapy is staggering.
Sharing diagnoses with the world is a way to access assistance and accommodations that improve quality of life. Sharing diagnoses with loved ones is a way to facilitate greater understanding and deeper relationships. Neither of those are for the sake of getting attention or being "special". The fact that you think that is the ony reason for sharing a diagnosis indicates a profound lack of understanding.
No one wants a disorder. Everyone just wants to be known, valued, and understood for who they are. Being autistic isn't something to be ashamed of, something to hide to "avoid sticking out like a sore thumb".
If you aren't autistic/don't have autism, then your opinion of what autistic people should do or how they refer to themselves is irrelevant, and your pretense of wishing to prevent offense to autistic people by telling THEM how THEY should refer to themselves is just laughably absurd.
Needed this🥲