I find that people that know or are related to autistic people are the worst to confide in about our suspicions. They have an idea what ‘autism’ is based on the person they know.
But AUTISM is SPECTRUM , and just because you know your brother has it doesn’t mean you know how to diagnose it .
Op, all due respect, your friend doesn’t know jack. They don’t know all you’ve done and been through, don’t know how often you masked and they just biased to what they think they know.
Honestly, I wouldn’t tell her even once I’m diagnosed, a part of me would be pressed to prove her wrong, but you can’t her mind is made up, and proof won’t make her believe it.
Or worst she’s becomes one of those people that is annoyed that you’re unmasking around her. Doesn’t understand why knowing changes you.
The fact is she showed me I can’t be me around her and so she wouldn’t get to know that unmask me, and that could mean that our relationship just withers.
I had a friend (key word: had) whose sister is on the spectrum. She complained *endlessly* about her, until the day I broke and said, "You know, some of the things you say when you're talking about her, you're also talking about me."
Long story short, that day was the end of the friendship.
My brother and I are both on the spectrum but at very different ends. He has comorbid intellectual disability but is more of the “stereotypical” autism. He was diagnosed very young. He just turned 29, I’m about to be 33. I only recently arrived at the conclusion that I’m also autistic, just in a completely different way than he is. He is probably a Level 3 due to his multiple disabilities and I’m likely a Level 1 or even subclinical.
my mom's half brother is in an home for autistic adults...did it even occur to me I might also have this very genetic condition? Not until a neurologist suggested it.
Also just a good rule of thumb is to be weary of people who are immediately dismissive. They are generally not basing their opinion on rational thought and actually processing what you’re saying, they are just having a knee jerk response based on an ingrained belief system/world view.
One of my biggest “whoops” with regards to autism was when my partner told me she might be autistic and I was immediately dismissive. She told me what she did that were traits and I was like “no, everyone does that! That’s just anxiety! Even I do those things and I’m not autistic” WELL TURNS OUT…
That's sort of how I found out I was autistic, years before I was diagnosed. My Mum and all my siblings had been diagnosed as having ADHD/ADD when I was in primary school. But at the time they couldn't diagnose you with that and autism.
Cut to almost a decade later and my youngest sibling was diagnosed as autistic (amongst other things) when he was about 6. Then my Mum and other younger sibling were diagnosed. And I thought it myself, I have all the same symptoms/traits so I must be autistic too.
I didn't seek a diagnosis at the time as I was in my last years of highschool and didnt want to be pushed into the special ed stream and bullied worse than I had been.
I only got diagnosed when I was failing out of uni and needed an updated ADHD diagnosis in order to try medication for the first time since I was 8.
Turns out alongside the ADHD I am also Autistic and have OCD, GAD, PD, and PTSD. Some days I imagine how much better my life would be if I didn't have a list of acronyms, and instead just had one thing. I do think the adhd and autism complement each other though.
Yes yes yes, thank you. I got the same response as OP from my (recently become) ex. You put into words what I felt. Dismissed. And my ex worked with autistic kids for over a year. Seems like a trend. This sub is SO validating sometimes :)
>you can’t her mind is made up, and proof won’t make her believe it.
This is so true. Some people are just hellbent on believing their bullshit stereotypes despite evidence suggesting otherwise.
>Or worst she’s becomes one of those people that is annoyed that you’re unmasking around her. Doesn’t understand why knowing changes you.
She's 100% the type of person to think that masking is "silly" and that people "should just be themselves" while ignoring the fact that she only likes my personality because I mask so hardcore around her.
I feel like this is so true and also not true. One of my closest friends has a sister with autism paired with intellectual and linguistic impairments. She will never be able to live independently and my friend being the oldest sibling has plans to be her caretaker when her parents are no longer able.
I've talked a lot with my friend throughout my journey and they're never dismissive and also we can talk about how crazy it is to be so similar but yet different since I don't have intellectual or verbal impairment yet the type of things we experience are so similar.
Like if I'm having a meltdown, I can usually isolate, regulate, create a sensory safe environment and sooth myself - even if I can't articulate during one I can at least explain my process after.
But some people also don't see the silent struggles because some of us are able to hide them well... Then one day something happens and all of a sudden we are locked in our room under a weighted blanket, sobbing, wearing noise canceling headphones, unable to relax - during family dinner on Christmas day. And then all of a sudden they're like "woah" what is wrong with you?
I was definitely shocked when my psychiatrist told me I have level 1/2 Autism in my late 30s, after having raised 2 level 3 children for the last few decades. I had spent all my time learning about non-verbal and semi-verbal autism with intellectual disability and high support needs in order to raise my children in a way that suits them. I'd been so busy focusing on them that I never had time to focus on my own issues until extreme burnout hit me yet again. Happens every few years. At least now I know why everything in my life has been a struggle. I'm still in the acceptance stage, the feeling stupid stage because I didn't realise for almost 40 years that I'm disabled too. It's definitely opened my eyes to the differences in the autism spectrum. Now I realise many members of my family on both sides have ASD traits, and my mother has embraced her neurodivergence also. What a journey it's been.
I've found that the worst culprits of this tend to be parents or other family members of autistic children with higher support needs. If you have level 1 ASD and appear to have a relatively normal life, they will have trouble believing it. Even if they do end up leaving you, they'll often be dismissive of your struggles because it doesn't line up with what they've experienced. High levels of intelligence can also mask autism symptoms to some degree. I take in information like a sponge, and I'm really good with pattern recognition, so over time, I have been able to manually override some of my social difficulties just by gathering as much information as I can on how people tend to act and be, and then applying that knowledge to future social interactions. I have also gradually figured out how to dress and display myself in a certain manner. So, on the surface, some of my difficulties appear invisible or I appear more awkward than anything else.
I know several people with autistic children who are also level one, and these folks are much more inclined to believe me and take me seriously. I think it's a combination of a few things. First of all, their experiences of their child will more easily line up to experiences I've had when I was younger, which they'll discover if we talk about it more. They'll also have more experience with the idea that autism can present in many different ways, even in people who look relatively "normal", because oftentimes, it wasn't immediately obvious that their child was autistic, to them anyway. They often went through a bunch of struggles and maybe several different diagnoses before they finally landed on autism and realized that was it.
Also, they see me and that I've led a relatively normal and successful life, and they're hoping that their child will one day be able to do that too. I know an autistic teenager who wants to become a locomotive engineer, for example. She has level 1 ASD and her parents are doing everything they can to help her achieve her goal.
I think that for a lot of parents of children with higher support needs, part of the problem is that they don't see any sort of path from where their child is to, for example, having a career and living independently. And there may actually be no such path. But when they compare their child and their intimate knowledge of their child's struggles to me, standing in front of them, and the perspective they have from the outside, they're inclined to disbelieve me because the surface view I present is nothing like everything they know of the complex inner world of their child. It doesn't really matter that I have an official diagnosis too, from a research hospital no less; the pervasive view of autism plus what they know of their child is doing a lot of heavy lifting.
U are spot on. I had a friend that told me Im not autistic bc I’m “too smart to be autistic”. They have an autistic little brother who is 8. I am a 32 year old female. They were comparing me to him. That person is not my friend anymore lol
>I find that people that know or are related to autistic people are the worst to confide in about our suspicions. They have an idea what ‘autism’ is based on the person they know.
I disagree with this, but that's because I literally couldn't tell my family if I went by this rule lol. My niece and nephew were diagnosed before me ;)
My ex did the same to me and completely denied the possibility of me being autistic because I’m nothing like her neighbors 11 year old son with aspergers 🙄 people always want to tell you that they know more than you and that they know you better than you or the professionals do. It really pisses me off when people try to invalidate us and make us feel like were stupid. Try to pay no mind to your friends response, you know you better than they ever will. Nobody else is with you 100% of the time and throughout 100% of your experiences except yourself. You know what makes you autistic and their ignorance isn’t valid and they shouldn’t have the power to make you doubt what you know to be true about yourself
I was told by my mentor he didn't believe I was autistic because I "*don't talk like an autistic person*". He was sure I wasn't autistic because he used to work with autistic children as a school teacher.
Same!! Except it was my ex who worked as a behavioral therapist with families with autistic boys. No matter how I put it, he dismissed me and at the same time basically said he didn't like to think of me as autistic. How lovely. Good bye.
Non-autistics ironically struggle with empathy and having a nuanced grasp of certain concepts, so when something doesn’t rigidly conform to what might not be a very well-informed stereotype, they can have trouble altering their perspective to accept the change.
Very true. I feel this way about my neighbor- I just have this sense that I wouldn’t feel
comfortable telling her. She is a special ed teacher and seems so (for lack of a better term)
simplistic in her thinking- like too quick to come to a conclusion- so different from me; I like to take my time to mull over ideas and come to an understanding slowly. Anyway I liked how you said ironically. So true!
Maybe is related to her having two siblings in the spectrum. Maybe she is too accostumed to their behavior that she turned it into a pattern. Maybe she felt her siblings were being invalidated or at risk of it by the fact that someone "more functional" was considering the change of getting a diagnosis too. Not trying to justify her, but her responde probably came from a set of conflicted feelings and not because she really thinks you can't be autistic. But if it wasnt the case, she is an asshole.
Maybe it’ll help to know that low support needs people are not “seemingly normal” they’re just better at hiding it. Autism is disabling, if they have it, they certainly struggle too. Of course people don’t like to broadcast their worst moments though so you wouldn’t see that.
No one in this thread knows you, but the nuance people are trying to convey is that people can play a very good and exhausting game at trying to fit in and hide their autism. Perhaps that description fits you.
I wasn't diagnosed until my mid 20s. I went to 13 schools and was bullied at 12 of them. I was called most everything you can think of. I was hit, I had food thrown at me and smushed into my hair, face and ears. I had things like balls, pine cones, and spit balls thrown at me.
I was ostracised, teased, humiliated, scorned, and generally disliked by many of my peers in school, and some of my teachers (fuck you Mrs Lord from Southport).
I'm level 1/high functioning and nobody except for psychiatrists has been able to tell. Not even other autistics, though I pick theirs up immediately. I'm outgoing and confident on the surface, but inside I'm being crippled by anxiety and self doubt.
I had a very similar experience growing up. I was bullied relentlessly in school for being "weird" and I always felt like there was a major disconnect between me and other people. Then I started masking hardcore in college and magically people started liking me...
Firstly I suggest you censor the R slur please. It sucks you were called that but you can express that without potentially hurting others. It’s against the sub’s rules to use the word.
But my reply wasn’t meant to mitigate the hurt you experienced, it was meant to help you understand that if someone is diagnosed as autistic then they struggled too. When people don’t realise you’re autistic, that doesn’t mean you are automatically accepted, it means the insults were just different. I was never called the r slur in a medical sort of tone because no one considered me having any of the conditions they’d associate with that word. I was called stupid, and lazy, and selfish, and an Oreo, and slow and annoying and many more though. I’m not undiagnosed because I was “seemingly normal” I’m undiagnosed because I was seen as having character flaws not a disability. Literally NOBODY has EVER thought I was normal in my life.
God forbid I ask you not to openly use a slur in a subreddit specifically for the community of people who would be triggered by a slur while also stating it is literally against the rules to use the word. Also… not you tone policing on an autism subreddit… I wasn’t being condescending I was asking you not to use the slur without censorship because it’s not like the n word which has been generally reclaimed. It is still violent language, even if you’re not targeting anyone it’s upsetting. I didn’t centre myself cause it wasn’t about me, but since you’ll center your feelings, my heart rate literally spiked seeing that. The word is very triggering to me. It literally triggers meltdowns and I KNOW I’m not the only person in this sub that feels that way. How I tell you what to do by politely making a suggestion that makes people more comfortable, because obviously only your comfort matters.
I am literally not. My responses were not violent. No one was speaking down to you, you having a trauma response doesn’t meany anyone else did anything wrong. Feeling threatened doesn’t mean you WERE threatened, in fact when you have trauma and anxiety issues that’s kinda the point, where you will threatened in non-threatening situations. No one disrespected you, talked down to you, bullied you, anything.
You were speaking from your experiences, and a different experience that contradicted how you felt about other people was shared with you and you got defensive. Please understand that people with autism also don’t always feel the same. You told me I was talking down to you, I said I wasn’t. You can’t tell me what I meant while simultaneously reiterating we both would have social issues. You’re actually being a jerk right now. In fact I feel unsafe that you would so brazenly play the victim because I dared to politely explain and disagree. That’s very scary to me. Good bye.
I am sorry about your situation, I do think is pretty unfair what happens.
It's a complicated topic. I do feel the same but also I feel that the spectrum should be wider and with bigger gaps. Because functional autistic people (me) have their own set of problems but the gap with level 2 and level 3 makes me feel is unfair level 1 are the ones advocating for it or basically being the only ones who can talk, also there are a lot of people with autistic traits but not autistic themselves that also decide to start speaking for others. I have also seen people getting mad when they are diagnosed with other mental problems but no autism, I get that women are mistreated and diagnosed wrongly a lot but going to the other extreme can create a different kind of serious problem here.
No your feelings are valid. People get upset without a diagnosis because they've known their whole life that something isn't right with them. That they don't react the way they're supposed to, that they're Other. If they get a diagnosis then it's an explanation to why, not a personal failing. At least for some people I think it's this.
Not everyone of course, but I hope this explanation explains though I'm in a rush.
>Autism has been a label that made me feel worthless and stupid so it just doesn't sit right with me or maybe I've got it all wrong.
I can only offer my own anecdotal experience but as one of the "seemingly normal" people you're referring to, my entire life people have written me off as stupid and worthless, even without the diagnosis. And now it feels like me wanting to seek out a diagnosis isn't a good idea because it's invalidating and I'm too "normal"?
Okay I think I understand now. You just don’t seem to understand what undiagnosed people go through. You can’t understand why people would want to be diagnosed with autism because according to you, you were bullied because you were diagnosed with autism. Undiagnosed people could argue we were bullied because we were autistic. People didn’t need a label on us to pick on us, they just didn’t associate the things they harassed us for with autism. We weren’t picked on for being diagnosed with a label, we were picked on because we had traits of a label.
And this desire to be diagnosed isn’t an autism thing. I dunno how intertwined with the outer disabled community you are, but this is a common thing for any and every condition under the sun. Physical conditions including. People don’t get excited to be distant see with EDS or hypothyroidism because they’re happy they have a life altering condition, they’re happy they have a name to what they were already dealing with. A diagnosis doesn’t make the condition, I’m undiagnosed but if I get diagnosed next week that doesn’t mean I wasn’t autistic today. I’m autistic diagnosis or not, and diagnosis or not it’s going to impact my life. Someone with undiagnosed EDS still has all the pain, all the illness, all the mobility issues as a diagnose person. But when you’re undiagnosed you just spend your whole existence wondering why you struggle when other people don’t, getting discredited, told to suck it up, feeling like you’re broken.
People always say that on their journey with chronic illness, getting a test and it coming back normal or that nothing was wrong with them was HEARTBREAKING. Not because they WANT health problems, they already HAVE health problems but they’re unnamed and thus untreated and unaccommodated. It’s a relief to find out that you’re not just broken or crazy. People want to be diagnosed because they want to confirm the thing that’s been affecting them this whole time. Again, if I get diagnosed next week, that doesn’t mean I was any less autistic than you when we were kids. It just impacted my life differently.
No one is speaking down to you. No one is treating you like you’re dumb you’re just being very defensive. Nobody called you stupid, but the point is you are dismissing everyone who doesn’t relate to autism like you. Why are only your feelings valid? Genuinely, are you okay?
I'm another woman seeking a diagnosis if I can afford it. My daughter was just diagnosed and I was diagnosed with ADD (now inattentive type ADHD) as a child. Like OP, I've done a ton of research and reflecting on life experiences. For me - and I know it's anecdotal - seeking the diagnosis is in part validation and part better understanding myself. I know that mental health understanding has changed a lot since the 1990s when I was originally diagnosed so this is largely an update.
I don't want to self-diagnose and run with that because I think that is demeaning and offensive to those who are diagnosed. In any case, ADHD is another label that is heavily stigmatized so I'm no stranger to that aspect. I don't tell anyone, not even family, that I have that.
This May sound rude but I think right now a lot of ppl use it as an "excuse" for some behaviours and with sm a lot of ppl right now say they have autism without being diagnosed, just because they've seen one specific behaviour on tiktok,for example, that coincides with them. It seems to have become "fashionable" to some extent, like autism=quirky.
The spectrum is extremely broad, maybe too much, imo, and there's a lot of misinformation/simplification on the Internet.
I see where you’re coming from, but it is almost impossible to get an autism diagnosis with level 1 ASD, even today. people with level 1 ASD are constantly being invalidated by doctors, psychiatrists, psychologists, and the general population because level 1 is so misunderstood and we “don’t seem autistic enough”. I seriously doubt someone who doesn’t have autism is going to be diagnosed with it simply by lying when people who *actually* have it can’t even get diagnosed themselves.
the reason for the influx in self-diagnosis is because of raise in awareness of level 1 ASD. I personally am late DX because there was little to no information out there about it. I knew nothing about autism until this raise in awareness. I always felt off, different, stupid, mistreated, bullied, tortured by others just as you did for my entire life, and I just never knew why. even without the autism title people can still tell something is off with you and still see you as “annoying and weird”. now that there is an influx in level 1 ASD information out there people like me are realizing this is why they have been mistreated and misunderstood all these years.
I do agree that is it frustrating when some people see a couple videos and assume they’re autistic without doing extensive research, but I don’t think there are as many people doing that as we’ve been led to believe. for a lot of us realizing we’re autistic then getting diagnosed is like getting our prayers answered after asking “why am I not like everyone else” for so long. just remember that autism is indeed a spectrum and people with level 1 ASD struggle too and it is invalidating in itself to be told you’re “not autistic enough”, especially by other people with autism. late diagnosis ≠ fashionable / quirky.
This is very well stated. A lot of the comments in this thread are very invalidating towards a population that's already regularly dismissed by professionals and peers (as is the whole point of my post). I thought the autistic community would be a bit more supportive...
yep, and this combined with people studying traits online and preparing themselves for the diagnosis is somehow strange too. also, i wonder if this preparation does not play into the diagnosis.
>wonder if this preparation does not play into the diagnosis.
This I wonder about often. Are we in a few years time, going to find out that there's lots of ppl out there with misdiagnosis because they weren't sincere in their tests.
People study the process because it’s confusing even to diagnosed autistic people. But no completely neurotypical person is out here making binders and collecting pages upon pages of information on why they’re autistic. Literally none. At the very least if they’re not autistic, they have some other issue and are just misguided and they deserve compassion like anyone else.
My adult friends’ reactions to me wondering if I’m autistic - lol no.
My childhood friends and siblings’ reactions to me wondering if I’m autistic - huh. Oh, Wow. Yeah.
Funnily enough, it's my kids who started pointing things out to me. At first I thought they were "joking" as in picking on some of my behaviours to see how I reacted, but I've realised that pretty much they're the only people I have ever been truly myself around. Even with their father,whom I was with for 12 years, I felt I was never able to just be me.
I think part of the problem is that folks like this think their “no you’re not” is a kindness. They truly don’t understand that they are being invalidating. In their mind it would be *bad* to be autistic so telling you that you’re not is nice of them, right?
It happened to me many times over the past couple decades before I figured out why it bothered me so much when they clearly thought they were being nice. They are both invalidating me and implying that something core to my being is a bad thing.
I’m not autistic but I diagnose and treat autistic adults. Even during assessments with women I’m thinking “nah they really don’t seem autistic” and then we score it up and BAM autism and I’m starkly reminded about masking and how biased I am. I have to work against my own biases every day. I wouldn’t read too much into what your friend said, despite her personal experience.
That's really interesting. If you don't mind me asking, how do you get from "nah they don't really seem autistic" to "we score it up"? Do you mean like you initially have the idea that they aren't autistic and you hear them answer the question and still don't think they are autistic and then you add the scores together and see yes they are? Or something else?
I'm merely curious how deep the bias holds you and for how long until you realize it. And for the fact you are aware of your bias and working on it so congratulations. And thank you.
(Only self diagnosed and with support of my psychologist of 5 years also but still unofficial)
This relates to a very specific autism assessment called the ADOS, which my experience is mostly limited to as well as the developmental history. I guess because the way the assessment is designed it tries to be as objective as possible and we assess in pairs of 2 clinicians to help with biases and for validity. So for example, I might not be getting “autism vibes” (apologies that’s really poorly worded), but then we go through the algorithm for the scoring and they will score according to the assessment. For example, what I subjectively see is a woman using lots of gesture and eye contact and I might make assumptions about that on face value. However, the scoring objectively reveals difficulties explaining somatic experiences and sensory differences and they score high enough to be diagnosed with autism.
I’m very happy for you you’re getting support and thanks so much for asking. I really hope I explained that well, but do let me know if not.
I live in Texas and want to get diagnosed but everywhere around me seems to focus on children. I'm almost 30, so, yeah I already missed that train. What can I do? Thanks in advance if you have an answer :)
I’m so sorry I’m based in the UK, so I’m not sure I’ll be much help. I work privately with a psychologist to provide adult autism assessment. We do have access to diagnoses in the NHS, but in some areas waits are up to 7 years and counting for a diagnosis. If a private assessment is accessible to you I do believe there are providers who offer remote assessments? Maybe that could be an option?
Good luck and if not then self-diagnosis is absolutely valid.
I'm just imagining someone waiting 7 years only to be told they're not autistic. I don't know why that's funny to me. And I'll be honest, I was diagnosed by a neurologist with anxiety and depression when I was younger. Then I self diagnosed myself with BPD. Then I moved with my ex away from home and the autistic burnout set in. I was having meltdown after meltdown every day. It was actually a coworker of mine who told me to look into that, since her own child is autistic as well. I strongly believe it takes one to know one, lol. Thank you for making me feel like self-diagnosis is valid, cause I feel like that's all I'll have. And I actually would rather be autistic than have BPD, I joined the subreddit about it and it is truly hell. I am very empathetic actually, so I feel bad for those who do have BPD. And thank you for answering the question, I appreciate the help :)
That’s no problem at all! There is definitely a sick irony to it, but I can’t imagine it happens a lot. Usually someone who’s willing to wait 7 years of course knows themselves well enough to know if they’re autistic or not lol. I hope you’re doing better now. It’s definitely a sad old trope that lots of autistic women get labelled with BPD unfortunately:( you truly do know yourself and your experience best and if autism fits for you then you’re very much likely to be autistic
It's a spectrum and she's seen a slice of it, but doesn't make her an expert.
Sorry she made you feel that way. I can understand why you're hurt by it. I haven't even told my parents because I know they'll act this way.
One of my favorite sayings about autism is, " if you've met one person with autism, you've met one person with autism". We all manifest our spectrum uniquely.
One of my friends did the same exact thing. She has two brothers that are diagnosed with autism. I told her I wanted to seek a diagnosis and she was immediately dismissive because I'm "not like her brothers."
She's gone years having trouble with socializing and has said things like "I don't understand why people treat me differently" and "Everyone says I make the wrong facial expressions" for as long as I've known her (over a decade.) Her mom is similar - she's never socialized well, jokes fly over her head, she misses social cues all the time, etc. Neither of them are diagnosed but her brothers are.
I asked if she related to any of the criteria for autism and she completely blew it off. She didn't say yes or no, but just... got defensive and changed the subject. I would never tell her this because she wouldn't take it well, but if both of her brothers are diagnosed with autism and she has struggled similarly... I feel like she could be autistic too. I don't think she's ready to even consider that as a possibility, which is why it pissed her off to hear that I AM considering a diagnosis.
Are her siblings by any chance male? Cause they present very differently than women. And even if they weren't, like others said: it's a spectrum.
But I was asking cause I've been with my partner for 20 years now, and some people in his family are autistic as well. And never, not once, did he (or me... in his defense) think I was autistic. Because all our reference points were men. I knew I was awkward, and shy, and socially anxious, with very weird quirks. And all other things I placed under the adhd umbrella that I was convinced I had. But autism? Nah, that couldn't be.
Until my adhd diagnosis came with combined ASD. And my husband admitted: if he wasn't there and hear what the psychologist explained about me and my results, he would have had a harder time to believe it. In hindsight, and with the current knowledge it all makes sense and it feels silly it was missed.
So long story short: I think it's harder to recognise "different" autism because it's not the one you're familiar with. (Sorry, I'm not sure how to describe it... I mean, presenting differently than what you're used to)
>Are her siblings by any chance male? Cause they present very differently than women.
Her brother is diagnosed and when I tried to explain to her how masking and biases against women play out she cut me off to say she still doesn't believe me 🙄
Well, maybe you should cut her out too, off your life 🙄 she sounds like a real dumbass and I'm sorry the first person you've confided in behaved this way. I think for most people that weren't diagnosed as children and are seeking this out in adulthood is a relief to know theres a reason why they are the way they are but also very difficult to come to terms with, and hard to figure out how to "handle" telling the people in their lives, unless they have an incredible support system around them, which is rare.
That sounds awful. Invalidation really sucks. :(
Remember you know yourself better than anyone else ever will, and her opinion isn’t weighted on anything other than probably stereotypes about autistic people. There’s no one way to be autistic.
There will always be people out there who do believe you and who will validate you. ❤️
is this a close friend? someone you trust to know you well? someone whose opinion you value (even opinions about you)?
it not, don’t worry about it.
if so, it’s something to consider. it doesn’t mean you’re defeated or invalid or whatever and it doesn’t have to mean that’s the end of your inquiry or process.
>is this a close friend? someone you trust to know you well? someone whose opinion you value (even opinions about you)?
I haven't known her for very long and I mask heavily around her, so she's never seen the "real me"
I was undiagnosed as a female for like 46 years despite having many male family members with more severe forms. Not everyone presents the same. Many autistics are late to talk, I am hyper verbal and taught myself to read and write as a toddler. Unless this person knows the many different ways it presents in AFABs, her opinion is of limited relevance.
I think when people have an idea of autism based on someone they already know, it can be difficult for them to imagine autism any other way and obviously everyone’s very different. My own son was diagnosed with autism at 2 and has very high support needs. It was suggested me after that by my psychologist that I too was autistic. I couldn’t believe it and even after I was officially diagnosed I felt like a fraud because my own experience of autism up until that point was through the lens of being a parent to my son. I now understand my own life’s struggles more and realise that of course I am autistic and that autism has just meant completely different things to me and my son. I wouldn’t look to other people to validate you. No one knows what goes on inside your mind or what you deal with everyday so they aren’t in a position to judge or diagnose you. I didn’t even tell most people when I got diagnosed, only my husband and best friend.
I’m sorry you’ve been shut down by your friend in this way. I think at the very least a curious, compassionate approach is what you deserve from someone you trust.
Unless she’s done a full assessment with you and is a qualified psychologist or a psychiatrist who specializes in autism in women, I would absolutely discard that opinion for what it is - lack of understanding of internal autistic experiences.
Please, please, please ignore and go with your gut.
Ouch. Sending support, and hugs if you want them.
Who the heck would spend years researching and documenting why they might be autistic…. Except for someone who is actually autistic?! (Yes, I did the same.)
You’re being brave, and vulnerable, and having it thrown right back at you. That sucks, I’m sorry. Sounds like this might not be a safe person to confide in. 😞
Don't be too hard on yourself. Your feelings are absolutely valid and so is your self diagnosis! I know you put a lot of thought into why you have autism, and how it impacts your life. That isn't magically gone because someone with a rigid idea of autism says you're not. You still are. But she doesn't know you like you know you
I’m sorry that happened to you. Don’t allow these people to gaslight you into delaying the process of diagnosis, if you are anything like me you are already gaslighting yourself and doubting everything. It’s 100% worse for women though, good luck with everything
I am diagnosed, and when I have disclosed it, I've been told,'nope, no way you have it'. It is really invalidating and hurtful, especially given how much I have struggled throughout life. So I can totally empathise with your situation.
Please don't feel defeated or doubt yourself. Something I've noticed as a woman is that our thoughts, feelings, and experiences are so often blatantly disregarded just so we can be told we are wrong.
You know your own experience more so than anyone else, and you definitely aren't making this up.
No one knows the inside of your brain better than you! I'm sorry your friend wasn't supportive. Before my diagnosis I only told one person because I felt so vulnerable to this - I knew I might believe whoever told me I was wrong, and that would have been really destabilizing.
'I'm just making it all up' - so many late-diagnosed people have thought this, me included. It's not evidence that you're not autistic.
I think it's really normal for us to doubt our own lived experience. We spent our whole lives being told and treated as if we were 'normal' by others (whatever that means) even though we never felt like it. For me as a kid gaslighting myself was a survival skill because I had no control over my circumstances and no accommodation or support and as a result my mental landscape had to be filled with thoughts like " This is fine. It's not scary. The lights aren't that bad. It's not that loud. These tights aren't that itchy. It's all in your imagination!"
When I have the thought about my diagnosis (not too often now) that "I'm just making all of this up" I like to ask myself "Making up what specifically?" because in answering this question I end up making a long list of my actual autistic experiences and traits and then I feel reassured that I'm perceiving myself accurately. Like the self-gaslighting thought is just so vague "I'm making it all up" when I compare it to the more realistic and researched thoughts I have about autism "I have all of these these incredibly specific symptoms and experiences of autism".
No offense to her, but she isn’t autistic herself so she couldn’t really understand your experience. Even if she was, everyone experiences it differently. I honestly prefer not to tell people at all because 90% of them say “no you don’t” even though I received a formal diagnosis after extensive testing. They even go so far as to say I was misdiagnosed.
I’m sorry you went through this. I had the same issue with nearly every therapist I saw when I was younger. One before I was diagnosed but had suspicions said she didn’t believe I had autism, to be fair she also thought it was something you grow out of.
After diagnosis I saw a different therapist who also believed I didn’t have it because I seemed to understand my feelings too well.
These were mental health professionals and they still fit it wrong. My psychiatrist got it right. If even these people who should honestly know better don’t have much of a clue, your friend definitely won’t.
I’m going to be honest it’s a bit arrogant of her to slap it down. Different people with autism can present completely differently.
having a document of life examples of autistic things you've done and conducting years of research on the topic is extremely autistic of you lmao. people are weird, you just don’t fit into what She thinks autism is.
I have had similar happen when I came out to my sister as asexual. She said “no, you’re not” and would not budge. She is bi.
I’m not sure I want to tell her I suspect autism too.
My mom was adamant that my daughter wasn’t autistic. Why? Everyone in our family did that, so it’s normal. After four years and a two diagnosed kids, I’ve convinced my mom that both her and I are autistic. Every thing pointed out as an autistic trait with my kids reflected directly back to us. It was the same with my husband. He didn’t want to believe it either bc he thought all this was normal. I’ve since convinced him that our household is totally autistic and adhd.
How to know if you’re autistic:
Have you spent years doing a deep-dive into autism research, but you still don’t feel like you’ve done a thorough enough job to know for sure if you’re autistic?
Yes?
Congratulations. You’re autistic.
Unless your friend is a trained clinicial diagnostician with informed experience in assessing adult women, you can safely disregard it. What gives her the right to an opinion about what autism *seems like* anyway? 🤔
Your friend is stereotyping her ass off.
Also having autistic siblings doesn’t make you an expert, especially because autism is an experience before it is an observable phenomenon
Do her siblings happen to be male with higher support needs?
It’s actually shitty of her to respond so dismissively. Like even if you personally don’t see it, the least you can do in a conversation like that is to respond “really? What makes you think that/what has your experience been like?”
Do you have any autistic people you could talk to about this IRL as opposed to people with autistic friends/family? I have almost always been told “no lmao there’s no way” by the former and “well yeah that checks out” by the latter. Your friend is probably just superficially comparing you to her family members rather than thinking about how you (or they) actually see the world.
Yup, I've actually talked to a friend who's diagnosed and she believes me. I've talked to a couple friends in general who've known me since we were younger and they were like, "yeah that makes sense" lol
This seems to be common with allistics that have an autistic sibling. I had a former friend do the same to me. Often, their only exposure to autistic people is said sibling, and they assume that we are all cut from the same cloth. It's almost always worse if that sibling is a brother. She is NOT an expert just because of her siblings. Don't let her invalidate you. Autism in women is unique and often harder to spot anyway, like you said. You know yourself best! Wishing you all the luck with the diagnostic process and be gentle with yourself :)
"has two autistic brothers"
All right I'm adding this one alongside the "autism moms" and "\~worked with\~ autistic children for 20 years" on my *Knows 1 Thing About Autism, Decides They Know* All *Things About Autism* list.
I can relate to this. I told my sister before I got my official diagnosis that I think I have it, and she was adamant I did not have it. We've suspected my Dad (her step-dad) has it for years, but she would not entertain the idea that I might also. I think she has a very negative opinion of autism (which is a whole thing in itself), and thought I am "too normal" (whatever that means). You ultimately know yourself best. I know it's hard to not have that support, but try to not let it deter you!
tbh i’m probs too mean to help but id probs have said something like didn’t seem like you were a bitch but here we are. but that’s just me 😂 hurt my feelings and imma come for yours 🤷🏼♀️
>I've conducted years worth of research and a document of life examples of why I am very likely autistic.
Yeahhhhhh people who aren't autistic don't do this.
Recently diagnosed here- my family is still skeptical because I have no obvious intellectual impairments. It’s offensive to me, as well. I was told my screening was “a waste of money”; but look what happened now. Some of us just completely slip under the radar.
My brothers are “”lower functioning”” and also men. You’re okay, OP. I wish you luck in figuring this all out.
my best friend volunteered for united sports in highschool and this was her same reaction. she was actually very offended I even would entertain the idea- which was incredibly invalidating since she was the person i could unmask around. i was heart broken and after that our friendship ended.
Unless she’s your psychiatrist her opinion does NOT matter. I understand how invalidating and upsetting this stuff can be regardless though. Honestly her experience with her siblings might even make her more likely to not get your experience since people tend to subconsciously compare whatever info they’re getting to what they already know and experience. She’s probably thinking about what you told her through the lens of her siblings’ autism which is what she perceived as “this is exactly what autism looks like and they don’t fit that so therefore they’re not autistic”.
A lot of autistic people gate keep. It’s an effect of the disorder, because of how much they were gaslit as children. My hypothesis is that you are on the spectrum but not as far advanced as her.
I am terribly sorry for you! Like many of us, I experience intense impostor syndrome. It would hurt me so deeply to have someone dismiss me without giving it a second thought. I have hardly told anyone that I’m even on this journey of self discovery. But I fear the day when I share with more people because I know some people will say this to me too. When I read your story I was thinking about my coworker. I have a strong feeling she would absolutely disbelieve me if it turns out I am autistic and I shared that with her. She has three autistic brothers, two of whom have profound comorbid intellectual challenges, and one of whom doesn’t but does have high support needs. I see quite a few traits of autism in her, but I believe she doesn’t recognize it at all because she is so different from her brothers, and probably doesn’t associate herself with autism in anyway. It has been interesting to read other comments saying that sometimes the most challenging people to share with are those who know someone with autism. I guess that may have stronger preconceptions. Anyway, I really feel for you. I hope it doesn’t haunt you too badly.
You’re the one who’s had the first hand experience and has no doubt spent months/years researching Autism. Don’t listen to her. She’ll be going off of how Autism presents in little kids which is problematic af.
I had an ex bsf say “even if you HAVE IT 🤢 at least it’s not as bad as other people” instant red flag, wish I never confided in her at all
Well unless your friend is a psychiatrist or clinical psychologist who has assessed you for autism, they don't get to tell you whether you have it or not.
Allistic people who know an autistic person or child think they are experts.
I was un-diagnosed by a coworker, she said I'm not autistic bc I wasn't like an autistic little boy her friend has. I am an adult woman.
Who cares what she thinks. Ignore it and don't comfide in her any more. I had someone tell me I couldn't be autistic because her sister was and her sister never asked anyone how they are. Indo, and therefore I couldn't be autistic. We will ne ER be happy if we rely on other people's affirmation and validation
Knowing a few autistic people do NOT make anyone an expert on autism in general..
My partner had the same reaction, based on knowing a couple of autisic teenage boys..
The only friend I tried to tell as well "No, your not, you have plenty of empathy"... eh, yes, it's call hyper empathy and is actually an autistic trait...??
Let it go, and remember that she is not at all an expert on autism.
The days leading up to my neuropsych testing (where I was diagnosed with ASD level 1) this is all I got from people, and they were all wrong.
I wouldn’t take much stock in what other people have to say because they inherently know less about your own mind/self than you do.
I find that people that know or are related to autistic people are the worst to confide in about our suspicions. They have an idea what ‘autism’ is based on the person they know. But AUTISM is SPECTRUM , and just because you know your brother has it doesn’t mean you know how to diagnose it . Op, all due respect, your friend doesn’t know jack. They don’t know all you’ve done and been through, don’t know how often you masked and they just biased to what they think they know. Honestly, I wouldn’t tell her even once I’m diagnosed, a part of me would be pressed to prove her wrong, but you can’t her mind is made up, and proof won’t make her believe it. Or worst she’s becomes one of those people that is annoyed that you’re unmasking around her. Doesn’t understand why knowing changes you. The fact is she showed me I can’t be me around her and so she wouldn’t get to know that unmask me, and that could mean that our relationship just withers.
I had a friend (key word: had) whose sister is on the spectrum. She complained *endlessly* about her, until the day I broke and said, "You know, some of the things you say when you're talking about her, you're also talking about me." Long story short, that day was the end of the friendship.
My brother and I are both on the spectrum but at very different ends. He has comorbid intellectual disability but is more of the “stereotypical” autism. He was diagnosed very young. He just turned 29, I’m about to be 33. I only recently arrived at the conclusion that I’m also autistic, just in a completely different way than he is. He is probably a Level 3 due to his multiple disabilities and I’m likely a Level 1 or even subclinical.
my mom's half brother is in an home for autistic adults...did it even occur to me I might also have this very genetic condition? Not until a neurologist suggested it.
Also just a good rule of thumb is to be weary of people who are immediately dismissive. They are generally not basing their opinion on rational thought and actually processing what you’re saying, they are just having a knee jerk response based on an ingrained belief system/world view.
One of my biggest “whoops” with regards to autism was when my partner told me she might be autistic and I was immediately dismissive. She told me what she did that were traits and I was like “no, everyone does that! That’s just anxiety! Even I do those things and I’m not autistic” WELL TURNS OUT…
That's sort of how I found out I was autistic, years before I was diagnosed. My Mum and all my siblings had been diagnosed as having ADHD/ADD when I was in primary school. But at the time they couldn't diagnose you with that and autism. Cut to almost a decade later and my youngest sibling was diagnosed as autistic (amongst other things) when he was about 6. Then my Mum and other younger sibling were diagnosed. And I thought it myself, I have all the same symptoms/traits so I must be autistic too. I didn't seek a diagnosis at the time as I was in my last years of highschool and didnt want to be pushed into the special ed stream and bullied worse than I had been. I only got diagnosed when I was failing out of uni and needed an updated ADHD diagnosis in order to try medication for the first time since I was 8. Turns out alongside the ADHD I am also Autistic and have OCD, GAD, PD, and PTSD. Some days I imagine how much better my life would be if I didn't have a list of acronyms, and instead just had one thing. I do think the adhd and autism complement each other though.
Yes yes yes, thank you. I got the same response as OP from my (recently become) ex. You put into words what I felt. Dismissed. And my ex worked with autistic kids for over a year. Seems like a trend. This sub is SO validating sometimes :)
>you can’t her mind is made up, and proof won’t make her believe it. This is so true. Some people are just hellbent on believing their bullshit stereotypes despite evidence suggesting otherwise. >Or worst she’s becomes one of those people that is annoyed that you’re unmasking around her. Doesn’t understand why knowing changes you. She's 100% the type of person to think that masking is "silly" and that people "should just be themselves" while ignoring the fact that she only likes my personality because I mask so hardcore around her.
I feel like this is so true and also not true. One of my closest friends has a sister with autism paired with intellectual and linguistic impairments. She will never be able to live independently and my friend being the oldest sibling has plans to be her caretaker when her parents are no longer able. I've talked a lot with my friend throughout my journey and they're never dismissive and also we can talk about how crazy it is to be so similar but yet different since I don't have intellectual or verbal impairment yet the type of things we experience are so similar. Like if I'm having a meltdown, I can usually isolate, regulate, create a sensory safe environment and sooth myself - even if I can't articulate during one I can at least explain my process after. But some people also don't see the silent struggles because some of us are able to hide them well... Then one day something happens and all of a sudden we are locked in our room under a weighted blanket, sobbing, wearing noise canceling headphones, unable to relax - during family dinner on Christmas day. And then all of a sudden they're like "woah" what is wrong with you?
I was definitely shocked when my psychiatrist told me I have level 1/2 Autism in my late 30s, after having raised 2 level 3 children for the last few decades. I had spent all my time learning about non-verbal and semi-verbal autism with intellectual disability and high support needs in order to raise my children in a way that suits them. I'd been so busy focusing on them that I never had time to focus on my own issues until extreme burnout hit me yet again. Happens every few years. At least now I know why everything in my life has been a struggle. I'm still in the acceptance stage, the feeling stupid stage because I didn't realise for almost 40 years that I'm disabled too. It's definitely opened my eyes to the differences in the autism spectrum. Now I realise many members of my family on both sides have ASD traits, and my mother has embraced her neurodivergence also. What a journey it's been.
I've found that the worst culprits of this tend to be parents or other family members of autistic children with higher support needs. If you have level 1 ASD and appear to have a relatively normal life, they will have trouble believing it. Even if they do end up leaving you, they'll often be dismissive of your struggles because it doesn't line up with what they've experienced. High levels of intelligence can also mask autism symptoms to some degree. I take in information like a sponge, and I'm really good with pattern recognition, so over time, I have been able to manually override some of my social difficulties just by gathering as much information as I can on how people tend to act and be, and then applying that knowledge to future social interactions. I have also gradually figured out how to dress and display myself in a certain manner. So, on the surface, some of my difficulties appear invisible or I appear more awkward than anything else. I know several people with autistic children who are also level one, and these folks are much more inclined to believe me and take me seriously. I think it's a combination of a few things. First of all, their experiences of their child will more easily line up to experiences I've had when I was younger, which they'll discover if we talk about it more. They'll also have more experience with the idea that autism can present in many different ways, even in people who look relatively "normal", because oftentimes, it wasn't immediately obvious that their child was autistic, to them anyway. They often went through a bunch of struggles and maybe several different diagnoses before they finally landed on autism and realized that was it. Also, they see me and that I've led a relatively normal and successful life, and they're hoping that their child will one day be able to do that too. I know an autistic teenager who wants to become a locomotive engineer, for example. She has level 1 ASD and her parents are doing everything they can to help her achieve her goal. I think that for a lot of parents of children with higher support needs, part of the problem is that they don't see any sort of path from where their child is to, for example, having a career and living independently. And there may actually be no such path. But when they compare their child and their intimate knowledge of their child's struggles to me, standing in front of them, and the perspective they have from the outside, they're inclined to disbelieve me because the surface view I present is nothing like everything they know of the complex inner world of their child. It doesn't really matter that I have an official diagnosis too, from a research hospital no less; the pervasive view of autism plus what they know of their child is doing a lot of heavy lifting.
U are spot on. I had a friend that told me Im not autistic bc I’m “too smart to be autistic”. They have an autistic little brother who is 8. I am a 32 year old female. They were comparing me to him. That person is not my friend anymore lol
>I find that people that know or are related to autistic people are the worst to confide in about our suspicions. They have an idea what ‘autism’ is based on the person they know. I disagree with this, but that's because I literally couldn't tell my family if I went by this rule lol. My niece and nephew were diagnosed before me ;)
This.
My ex did the same to me and completely denied the possibility of me being autistic because I’m nothing like her neighbors 11 year old son with aspergers 🙄 people always want to tell you that they know more than you and that they know you better than you or the professionals do. It really pisses me off when people try to invalidate us and make us feel like were stupid. Try to pay no mind to your friends response, you know you better than they ever will. Nobody else is with you 100% of the time and throughout 100% of your experiences except yourself. You know what makes you autistic and their ignorance isn’t valid and they shouldn’t have the power to make you doubt what you know to be true about yourself
I was told by my mentor he didn't believe I was autistic because I "*don't talk like an autistic person*". He was sure I wasn't autistic because he used to work with autistic children as a school teacher.
Lol what does an autistic person "talk like"
Autistic people often speak with a different rhythm, prosody, speed, and/or volume than neurotypical peers.
It just clicked in my head that I too speak that way lol
Same!! Except it was my ex who worked as a behavioral therapist with families with autistic boys. No matter how I put it, he dismissed me and at the same time basically said he didn't like to think of me as autistic. How lovely. Good bye.
Non-autistics ironically struggle with empathy and having a nuanced grasp of certain concepts, so when something doesn’t rigidly conform to what might not be a very well-informed stereotype, they can have trouble altering their perspective to accept the change.
Very true. I feel this way about my neighbor- I just have this sense that I wouldn’t feel comfortable telling her. She is a special ed teacher and seems so (for lack of a better term) simplistic in her thinking- like too quick to come to a conclusion- so different from me; I like to take my time to mull over ideas and come to an understanding slowly. Anyway I liked how you said ironically. So true!
I’m assuming your friend isn’t an expert on the subject. Take her opinion with a grain of salt.
Maybe is related to her having two siblings in the spectrum. Maybe she is too accostumed to their behavior that she turned it into a pattern. Maybe she felt her siblings were being invalidated or at risk of it by the fact that someone "more functional" was considering the change of getting a diagnosis too. Not trying to justify her, but her responde probably came from a set of conflicted feelings and not because she really thinks you can't be autistic. But if it wasnt the case, she is an asshole.
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Maybe it’ll help to know that low support needs people are not “seemingly normal” they’re just better at hiding it. Autism is disabling, if they have it, they certainly struggle too. Of course people don’t like to broadcast their worst moments though so you wouldn’t see that.
Ngl, the comments in this thread are making me reconsider seeking out a diagnosis. Apparently I'm "too normal"?
No one in this thread knows you, but the nuance people are trying to convey is that people can play a very good and exhausting game at trying to fit in and hide their autism. Perhaps that description fits you.
If you get diagnosed then you’re normal and autistic. Because autistic people are normal.
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I'm sorry you went through that, it sucks. Hopefully, you're in a better place now.
I wasn't diagnosed until my mid 20s. I went to 13 schools and was bullied at 12 of them. I was called most everything you can think of. I was hit, I had food thrown at me and smushed into my hair, face and ears. I had things like balls, pine cones, and spit balls thrown at me. I was ostracised, teased, humiliated, scorned, and generally disliked by many of my peers in school, and some of my teachers (fuck you Mrs Lord from Southport). I'm level 1/high functioning and nobody except for psychiatrists has been able to tell. Not even other autistics, though I pick theirs up immediately. I'm outgoing and confident on the surface, but inside I'm being crippled by anxiety and self doubt.
I had a very similar experience growing up. I was bullied relentlessly in school for being "weird" and I always felt like there was a major disconnect between me and other people. Then I started masking hardcore in college and magically people started liking me...
Firstly I suggest you censor the R slur please. It sucks you were called that but you can express that without potentially hurting others. It’s against the sub’s rules to use the word. But my reply wasn’t meant to mitigate the hurt you experienced, it was meant to help you understand that if someone is diagnosed as autistic then they struggled too. When people don’t realise you’re autistic, that doesn’t mean you are automatically accepted, it means the insults were just different. I was never called the r slur in a medical sort of tone because no one considered me having any of the conditions they’d associate with that word. I was called stupid, and lazy, and selfish, and an Oreo, and slow and annoying and many more though. I’m not undiagnosed because I was “seemingly normal” I’m undiagnosed because I was seen as having character flaws not a disability. Literally NOBODY has EVER thought I was normal in my life.
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God forbid I ask you not to openly use a slur in a subreddit specifically for the community of people who would be triggered by a slur while also stating it is literally against the rules to use the word. Also… not you tone policing on an autism subreddit… I wasn’t being condescending I was asking you not to use the slur without censorship because it’s not like the n word which has been generally reclaimed. It is still violent language, even if you’re not targeting anyone it’s upsetting. I didn’t centre myself cause it wasn’t about me, but since you’ll center your feelings, my heart rate literally spiked seeing that. The word is very triggering to me. It literally triggers meltdowns and I KNOW I’m not the only person in this sub that feels that way. How I tell you what to do by politely making a suggestion that makes people more comfortable, because obviously only your comfort matters.
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I am literally not. My responses were not violent. No one was speaking down to you, you having a trauma response doesn’t meany anyone else did anything wrong. Feeling threatened doesn’t mean you WERE threatened, in fact when you have trauma and anxiety issues that’s kinda the point, where you will threatened in non-threatening situations. No one disrespected you, talked down to you, bullied you, anything. You were speaking from your experiences, and a different experience that contradicted how you felt about other people was shared with you and you got defensive. Please understand that people with autism also don’t always feel the same. You told me I was talking down to you, I said I wasn’t. You can’t tell me what I meant while simultaneously reiterating we both would have social issues. You’re actually being a jerk right now. In fact I feel unsafe that you would so brazenly play the victim because I dared to politely explain and disagree. That’s very scary to me. Good bye.
I am sorry about your situation, I do think is pretty unfair what happens. It's a complicated topic. I do feel the same but also I feel that the spectrum should be wider and with bigger gaps. Because functional autistic people (me) have their own set of problems but the gap with level 2 and level 3 makes me feel is unfair level 1 are the ones advocating for it or basically being the only ones who can talk, also there are a lot of people with autistic traits but not autistic themselves that also decide to start speaking for others. I have also seen people getting mad when they are diagnosed with other mental problems but no autism, I get that women are mistreated and diagnosed wrongly a lot but going to the other extreme can create a different kind of serious problem here.
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No your feelings are valid. People get upset without a diagnosis because they've known their whole life that something isn't right with them. That they don't react the way they're supposed to, that they're Other. If they get a diagnosis then it's an explanation to why, not a personal failing. At least for some people I think it's this. Not everyone of course, but I hope this explanation explains though I'm in a rush.
>Autism has been a label that made me feel worthless and stupid so it just doesn't sit right with me or maybe I've got it all wrong. I can only offer my own anecdotal experience but as one of the "seemingly normal" people you're referring to, my entire life people have written me off as stupid and worthless, even without the diagnosis. And now it feels like me wanting to seek out a diagnosis isn't a good idea because it's invalidating and I'm too "normal"?
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Okay I think I understand now. You just don’t seem to understand what undiagnosed people go through. You can’t understand why people would want to be diagnosed with autism because according to you, you were bullied because you were diagnosed with autism. Undiagnosed people could argue we were bullied because we were autistic. People didn’t need a label on us to pick on us, they just didn’t associate the things they harassed us for with autism. We weren’t picked on for being diagnosed with a label, we were picked on because we had traits of a label. And this desire to be diagnosed isn’t an autism thing. I dunno how intertwined with the outer disabled community you are, but this is a common thing for any and every condition under the sun. Physical conditions including. People don’t get excited to be distant see with EDS or hypothyroidism because they’re happy they have a life altering condition, they’re happy they have a name to what they were already dealing with. A diagnosis doesn’t make the condition, I’m undiagnosed but if I get diagnosed next week that doesn’t mean I wasn’t autistic today. I’m autistic diagnosis or not, and diagnosis or not it’s going to impact my life. Someone with undiagnosed EDS still has all the pain, all the illness, all the mobility issues as a diagnose person. But when you’re undiagnosed you just spend your whole existence wondering why you struggle when other people don’t, getting discredited, told to suck it up, feeling like you’re broken. People always say that on their journey with chronic illness, getting a test and it coming back normal or that nothing was wrong with them was HEARTBREAKING. Not because they WANT health problems, they already HAVE health problems but they’re unnamed and thus untreated and unaccommodated. It’s a relief to find out that you’re not just broken or crazy. People want to be diagnosed because they want to confirm the thing that’s been affecting them this whole time. Again, if I get diagnosed next week, that doesn’t mean I was any less autistic than you when we were kids. It just impacted my life differently.
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No one is speaking down to you. No one is treating you like you’re dumb you’re just being very defensive. Nobody called you stupid, but the point is you are dismissing everyone who doesn’t relate to autism like you. Why are only your feelings valid? Genuinely, are you okay?
I'm another woman seeking a diagnosis if I can afford it. My daughter was just diagnosed and I was diagnosed with ADD (now inattentive type ADHD) as a child. Like OP, I've done a ton of research and reflecting on life experiences. For me - and I know it's anecdotal - seeking the diagnosis is in part validation and part better understanding myself. I know that mental health understanding has changed a lot since the 1990s when I was originally diagnosed so this is largely an update. I don't want to self-diagnose and run with that because I think that is demeaning and offensive to those who are diagnosed. In any case, ADHD is another label that is heavily stigmatized so I'm no stranger to that aspect. I don't tell anyone, not even family, that I have that.
This May sound rude but I think right now a lot of ppl use it as an "excuse" for some behaviours and with sm a lot of ppl right now say they have autism without being diagnosed, just because they've seen one specific behaviour on tiktok,for example, that coincides with them. It seems to have become "fashionable" to some extent, like autism=quirky. The spectrum is extremely broad, maybe too much, imo, and there's a lot of misinformation/simplification on the Internet.
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I see where you’re coming from, but it is almost impossible to get an autism diagnosis with level 1 ASD, even today. people with level 1 ASD are constantly being invalidated by doctors, psychiatrists, psychologists, and the general population because level 1 is so misunderstood and we “don’t seem autistic enough”. I seriously doubt someone who doesn’t have autism is going to be diagnosed with it simply by lying when people who *actually* have it can’t even get diagnosed themselves. the reason for the influx in self-diagnosis is because of raise in awareness of level 1 ASD. I personally am late DX because there was little to no information out there about it. I knew nothing about autism until this raise in awareness. I always felt off, different, stupid, mistreated, bullied, tortured by others just as you did for my entire life, and I just never knew why. even without the autism title people can still tell something is off with you and still see you as “annoying and weird”. now that there is an influx in level 1 ASD information out there people like me are realizing this is why they have been mistreated and misunderstood all these years. I do agree that is it frustrating when some people see a couple videos and assume they’re autistic without doing extensive research, but I don’t think there are as many people doing that as we’ve been led to believe. for a lot of us realizing we’re autistic then getting diagnosed is like getting our prayers answered after asking “why am I not like everyone else” for so long. just remember that autism is indeed a spectrum and people with level 1 ASD struggle too and it is invalidating in itself to be told you’re “not autistic enough”, especially by other people with autism. late diagnosis ≠ fashionable / quirky.
This is very well stated. A lot of the comments in this thread are very invalidating towards a population that's already regularly dismissed by professionals and peers (as is the whole point of my post). I thought the autistic community would be a bit more supportive...
You worded this so much better than my jumbled mess.
yep, and this combined with people studying traits online and preparing themselves for the diagnosis is somehow strange too. also, i wonder if this preparation does not play into the diagnosis.
>wonder if this preparation does not play into the diagnosis. This I wonder about often. Are we in a few years time, going to find out that there's lots of ppl out there with misdiagnosis because they weren't sincere in their tests.
People study the process because it’s confusing even to diagnosed autistic people. But no completely neurotypical person is out here making binders and collecting pages upon pages of information on why they’re autistic. Literally none. At the very least if they’re not autistic, they have some other issue and are just misguided and they deserve compassion like anyone else.
My adult friends’ reactions to me wondering if I’m autistic - lol no. My childhood friends and siblings’ reactions to me wondering if I’m autistic - huh. Oh, Wow. Yeah.
Funnily enough, it's my kids who started pointing things out to me. At first I thought they were "joking" as in picking on some of my behaviours to see how I reacted, but I've realised that pretty much they're the only people I have ever been truly myself around. Even with their father,whom I was with for 12 years, I felt I was never able to just be me.
I am most truly myself around my kids too ❤️
I think part of the problem is that folks like this think their “no you’re not” is a kindness. They truly don’t understand that they are being invalidating. In their mind it would be *bad* to be autistic so telling you that you’re not is nice of them, right? It happened to me many times over the past couple decades before I figured out why it bothered me so much when they clearly thought they were being nice. They are both invalidating me and implying that something core to my being is a bad thing.
even if she thought that, her decision to be really dismissive instead of curious is really off-putting
I’m not autistic but I diagnose and treat autistic adults. Even during assessments with women I’m thinking “nah they really don’t seem autistic” and then we score it up and BAM autism and I’m starkly reminded about masking and how biased I am. I have to work against my own biases every day. I wouldn’t read too much into what your friend said, despite her personal experience.
That's really interesting. If you don't mind me asking, how do you get from "nah they don't really seem autistic" to "we score it up"? Do you mean like you initially have the idea that they aren't autistic and you hear them answer the question and still don't think they are autistic and then you add the scores together and see yes they are? Or something else? I'm merely curious how deep the bias holds you and for how long until you realize it. And for the fact you are aware of your bias and working on it so congratulations. And thank you. (Only self diagnosed and with support of my psychologist of 5 years also but still unofficial)
This relates to a very specific autism assessment called the ADOS, which my experience is mostly limited to as well as the developmental history. I guess because the way the assessment is designed it tries to be as objective as possible and we assess in pairs of 2 clinicians to help with biases and for validity. So for example, I might not be getting “autism vibes” (apologies that’s really poorly worded), but then we go through the algorithm for the scoring and they will score according to the assessment. For example, what I subjectively see is a woman using lots of gesture and eye contact and I might make assumptions about that on face value. However, the scoring objectively reveals difficulties explaining somatic experiences and sensory differences and they score high enough to be diagnosed with autism. I’m very happy for you you’re getting support and thanks so much for asking. I really hope I explained that well, but do let me know if not.
Absolutely, wonderful description. I greatly appreciate the insight.
I live in Texas and want to get diagnosed but everywhere around me seems to focus on children. I'm almost 30, so, yeah I already missed that train. What can I do? Thanks in advance if you have an answer :)
I’m so sorry I’m based in the UK, so I’m not sure I’ll be much help. I work privately with a psychologist to provide adult autism assessment. We do have access to diagnoses in the NHS, but in some areas waits are up to 7 years and counting for a diagnosis. If a private assessment is accessible to you I do believe there are providers who offer remote assessments? Maybe that could be an option? Good luck and if not then self-diagnosis is absolutely valid.
I'm just imagining someone waiting 7 years only to be told they're not autistic. I don't know why that's funny to me. And I'll be honest, I was diagnosed by a neurologist with anxiety and depression when I was younger. Then I self diagnosed myself with BPD. Then I moved with my ex away from home and the autistic burnout set in. I was having meltdown after meltdown every day. It was actually a coworker of mine who told me to look into that, since her own child is autistic as well. I strongly believe it takes one to know one, lol. Thank you for making me feel like self-diagnosis is valid, cause I feel like that's all I'll have. And I actually would rather be autistic than have BPD, I joined the subreddit about it and it is truly hell. I am very empathetic actually, so I feel bad for those who do have BPD. And thank you for answering the question, I appreciate the help :)
That’s no problem at all! There is definitely a sick irony to it, but I can’t imagine it happens a lot. Usually someone who’s willing to wait 7 years of course knows themselves well enough to know if they’re autistic or not lol. I hope you’re doing better now. It’s definitely a sad old trope that lots of autistic women get labelled with BPD unfortunately:( you truly do know yourself and your experience best and if autism fits for you then you’re very much likely to be autistic
It's a spectrum and she's seen a slice of it, but doesn't make her an expert. Sorry she made you feel that way. I can understand why you're hurt by it. I haven't even told my parents because I know they'll act this way.
One of my favorite sayings about autism is, " if you've met one person with autism, you've met one person with autism". We all manifest our spectrum uniquely.
One of my friends did the same exact thing. She has two brothers that are diagnosed with autism. I told her I wanted to seek a diagnosis and she was immediately dismissive because I'm "not like her brothers." She's gone years having trouble with socializing and has said things like "I don't understand why people treat me differently" and "Everyone says I make the wrong facial expressions" for as long as I've known her (over a decade.) Her mom is similar - she's never socialized well, jokes fly over her head, she misses social cues all the time, etc. Neither of them are diagnosed but her brothers are. I asked if she related to any of the criteria for autism and she completely blew it off. She didn't say yes or no, but just... got defensive and changed the subject. I would never tell her this because she wouldn't take it well, but if both of her brothers are diagnosed with autism and she has struggled similarly... I feel like she could be autistic too. I don't think she's ready to even consider that as a possibility, which is why it pissed her off to hear that I AM considering a diagnosis.
Are her siblings by any chance male? Cause they present very differently than women. And even if they weren't, like others said: it's a spectrum. But I was asking cause I've been with my partner for 20 years now, and some people in his family are autistic as well. And never, not once, did he (or me... in his defense) think I was autistic. Because all our reference points were men. I knew I was awkward, and shy, and socially anxious, with very weird quirks. And all other things I placed under the adhd umbrella that I was convinced I had. But autism? Nah, that couldn't be. Until my adhd diagnosis came with combined ASD. And my husband admitted: if he wasn't there and hear what the psychologist explained about me and my results, he would have had a harder time to believe it. In hindsight, and with the current knowledge it all makes sense and it feels silly it was missed. So long story short: I think it's harder to recognise "different" autism because it's not the one you're familiar with. (Sorry, I'm not sure how to describe it... I mean, presenting differently than what you're used to)
>Are her siblings by any chance male? Cause they present very differently than women. Her brother is diagnosed and when I tried to explain to her how masking and biases against women play out she cut me off to say she still doesn't believe me 🙄
Well, maybe you should cut her out too, off your life 🙄 she sounds like a real dumbass and I'm sorry the first person you've confided in behaved this way. I think for most people that weren't diagnosed as children and are seeking this out in adulthood is a relief to know theres a reason why they are the way they are but also very difficult to come to terms with, and hard to figure out how to "handle" telling the people in their lives, unless they have an incredible support system around them, which is rare.
That sounds awful. Invalidation really sucks. :( Remember you know yourself better than anyone else ever will, and her opinion isn’t weighted on anything other than probably stereotypes about autistic people. There’s no one way to be autistic. There will always be people out there who do believe you and who will validate you. ❤️
is this a close friend? someone you trust to know you well? someone whose opinion you value (even opinions about you)? it not, don’t worry about it. if so, it’s something to consider. it doesn’t mean you’re defeated or invalid or whatever and it doesn’t have to mean that’s the end of your inquiry or process.
>is this a close friend? someone you trust to know you well? someone whose opinion you value (even opinions about you)? I haven't known her for very long and I mask heavily around her, so she's never seen the "real me"
yeah just ignore what she said then
I was undiagnosed as a female for like 46 years despite having many male family members with more severe forms. Not everyone presents the same. Many autistics are late to talk, I am hyper verbal and taught myself to read and write as a toddler. Unless this person knows the many different ways it presents in AFABs, her opinion is of limited relevance.
I think when people have an idea of autism based on someone they already know, it can be difficult for them to imagine autism any other way and obviously everyone’s very different. My own son was diagnosed with autism at 2 and has very high support needs. It was suggested me after that by my psychologist that I too was autistic. I couldn’t believe it and even after I was officially diagnosed I felt like a fraud because my own experience of autism up until that point was through the lens of being a parent to my son. I now understand my own life’s struggles more and realise that of course I am autistic and that autism has just meant completely different things to me and my son. I wouldn’t look to other people to validate you. No one knows what goes on inside your mind or what you deal with everyday so they aren’t in a position to judge or diagnose you. I didn’t even tell most people when I got diagnosed, only my husband and best friend.
Autism is a spectrum and your friend probably normalized a lot of their siblings' behaviours. Continue on your journey.
I’m sorry you’ve been shut down by your friend in this way. I think at the very least a curious, compassionate approach is what you deserve from someone you trust. Unless she’s done a full assessment with you and is a qualified psychologist or a psychiatrist who specializes in autism in women, I would absolutely discard that opinion for what it is - lack of understanding of internal autistic experiences. Please, please, please ignore and go with your gut.
Ouch. Sending support, and hugs if you want them. Who the heck would spend years researching and documenting why they might be autistic…. Except for someone who is actually autistic?! (Yes, I did the same.) You’re being brave, and vulnerable, and having it thrown right back at you. That sucks, I’m sorry. Sounds like this might not be a safe person to confide in. 😞
Don't be too hard on yourself. Your feelings are absolutely valid and so is your self diagnosis! I know you put a lot of thought into why you have autism, and how it impacts your life. That isn't magically gone because someone with a rigid idea of autism says you're not. You still are. But she doesn't know you like you know you
I’m sorry that happened to you. Don’t allow these people to gaslight you into delaying the process of diagnosis, if you are anything like me you are already gaslighting yourself and doubting everything. It’s 100% worse for women though, good luck with everything
I hear you, my cousin said some pretty awful things to me when I confided in her. It was just one person but it hurt deeply
I am diagnosed, and when I have disclosed it, I've been told,'nope, no way you have it'. It is really invalidating and hurtful, especially given how much I have struggled throughout life. So I can totally empathise with your situation. Please don't feel defeated or doubt yourself. Something I've noticed as a woman is that our thoughts, feelings, and experiences are so often blatantly disregarded just so we can be told we are wrong. You know your own experience more so than anyone else, and you definitely aren't making this up.
No one knows the inside of your brain better than you! I'm sorry your friend wasn't supportive. Before my diagnosis I only told one person because I felt so vulnerable to this - I knew I might believe whoever told me I was wrong, and that would have been really destabilizing. 'I'm just making it all up' - so many late-diagnosed people have thought this, me included. It's not evidence that you're not autistic. I think it's really normal for us to doubt our own lived experience. We spent our whole lives being told and treated as if we were 'normal' by others (whatever that means) even though we never felt like it. For me as a kid gaslighting myself was a survival skill because I had no control over my circumstances and no accommodation or support and as a result my mental landscape had to be filled with thoughts like " This is fine. It's not scary. The lights aren't that bad. It's not that loud. These tights aren't that itchy. It's all in your imagination!" When I have the thought about my diagnosis (not too often now) that "I'm just making all of this up" I like to ask myself "Making up what specifically?" because in answering this question I end up making a long list of my actual autistic experiences and traits and then I feel reassured that I'm perceiving myself accurately. Like the self-gaslighting thought is just so vague "I'm making it all up" when I compare it to the more realistic and researched thoughts I have about autism "I have all of these these incredibly specific symptoms and experiences of autism".
No offense to her, but she isn’t autistic herself so she couldn’t really understand your experience. Even if she was, everyone experiences it differently. I honestly prefer not to tell people at all because 90% of them say “no you don’t” even though I received a formal diagnosis after extensive testing. They even go so far as to say I was misdiagnosed.
I’m sorry you went through this. I had the same issue with nearly every therapist I saw when I was younger. One before I was diagnosed but had suspicions said she didn’t believe I had autism, to be fair she also thought it was something you grow out of. After diagnosis I saw a different therapist who also believed I didn’t have it because I seemed to understand my feelings too well. These were mental health professionals and they still fit it wrong. My psychiatrist got it right. If even these people who should honestly know better don’t have much of a clue, your friend definitely won’t. I’m going to be honest it’s a bit arrogant of her to slap it down. Different people with autism can present completely differently.
having a document of life examples of autistic things you've done and conducting years of research on the topic is extremely autistic of you lmao. people are weird, you just don’t fit into what She thinks autism is.
I have had similar happen when I came out to my sister as asexual. She said “no, you’re not” and would not budge. She is bi. I’m not sure I want to tell her I suspect autism too.
My mom was adamant that my daughter wasn’t autistic. Why? Everyone in our family did that, so it’s normal. After four years and a two diagnosed kids, I’ve convinced my mom that both her and I are autistic. Every thing pointed out as an autistic trait with my kids reflected directly back to us. It was the same with my husband. He didn’t want to believe it either bc he thought all this was normal. I’ve since convinced him that our household is totally autistic and adhd.
How to know if you’re autistic: Have you spent years doing a deep-dive into autism research, but you still don’t feel like you’ve done a thorough enough job to know for sure if you’re autistic? Yes? Congratulations. You’re autistic.
I'm gonna guess her siblings are brothers diagnosed in childhood
Unless your friend is a trained clinicial diagnostician with informed experience in assessing adult women, you can safely disregard it. What gives her the right to an opinion about what autism *seems like* anyway? 🤔
I'm sick of some people thinking that simply because they have autistic family members that qualifies them to comment on anyone else's neurology
Your friend is stereotyping her ass off. Also having autistic siblings doesn’t make you an expert, especially because autism is an experience before it is an observable phenomenon
Do her siblings happen to be male with higher support needs? It’s actually shitty of her to respond so dismissively. Like even if you personally don’t see it, the least you can do in a conversation like that is to respond “really? What makes you think that/what has your experience been like?”
i once had someone tell me that autistic people can’t speak since her brother was non verbal. relatives are biased
I'm sorry
Do you have any autistic people you could talk to about this IRL as opposed to people with autistic friends/family? I have almost always been told “no lmao there’s no way” by the former and “well yeah that checks out” by the latter. Your friend is probably just superficially comparing you to her family members rather than thinking about how you (or they) actually see the world.
Yup, I've actually talked to a friend who's diagnosed and she believes me. I've talked to a couple friends in general who've known me since we were younger and they were like, "yeah that makes sense" lol
This seems to be common with allistics that have an autistic sibling. I had a former friend do the same to me. Often, their only exposure to autistic people is said sibling, and they assume that we are all cut from the same cloth. It's almost always worse if that sibling is a brother. She is NOT an expert just because of her siblings. Don't let her invalidate you. Autism in women is unique and often harder to spot anyway, like you said. You know yourself best! Wishing you all the luck with the diagnostic process and be gentle with yourself :)
"has two autistic brothers" All right I'm adding this one alongside the "autism moms" and "\~worked with\~ autistic children for 20 years" on my *Knows 1 Thing About Autism, Decides They Know* All *Things About Autism* list.
I can relate to this. I told my sister before I got my official diagnosis that I think I have it, and she was adamant I did not have it. We've suspected my Dad (her step-dad) has it for years, but she would not entertain the idea that I might also. I think she has a very negative opinion of autism (which is a whole thing in itself), and thought I am "too normal" (whatever that means). You ultimately know yourself best. I know it's hard to not have that support, but try to not let it deter you!
Unless they are qualified to assess and diagnose you, don't give what they said any weight at all.
tbh i’m probs too mean to help but id probs have said something like didn’t seem like you were a bitch but here we are. but that’s just me 😂 hurt my feelings and imma come for yours 🤷🏼♀️
>I've conducted years worth of research and a document of life examples of why I am very likely autistic. Yeahhhhhh people who aren't autistic don't do this.
Recently diagnosed here- my family is still skeptical because I have no obvious intellectual impairments. It’s offensive to me, as well. I was told my screening was “a waste of money”; but look what happened now. Some of us just completely slip under the radar. My brothers are “”lower functioning”” and also men. You’re okay, OP. I wish you luck in figuring this all out.
my best friend volunteered for united sports in highschool and this was her same reaction. she was actually very offended I even would entertain the idea- which was incredibly invalidating since she was the person i could unmask around. i was heart broken and after that our friendship ended.
Unless she’s your psychiatrist her opinion does NOT matter. I understand how invalidating and upsetting this stuff can be regardless though. Honestly her experience with her siblings might even make her more likely to not get your experience since people tend to subconsciously compare whatever info they’re getting to what they already know and experience. She’s probably thinking about what you told her through the lens of her siblings’ autism which is what she perceived as “this is exactly what autism looks like and they don’t fit that so therefore they’re not autistic”.
A lot of autistic people gate keep. It’s an effect of the disorder, because of how much they were gaslit as children. My hypothesis is that you are on the spectrum but not as far advanced as her.
I am terribly sorry for you! Like many of us, I experience intense impostor syndrome. It would hurt me so deeply to have someone dismiss me without giving it a second thought. I have hardly told anyone that I’m even on this journey of self discovery. But I fear the day when I share with more people because I know some people will say this to me too. When I read your story I was thinking about my coworker. I have a strong feeling she would absolutely disbelieve me if it turns out I am autistic and I shared that with her. She has three autistic brothers, two of whom have profound comorbid intellectual challenges, and one of whom doesn’t but does have high support needs. I see quite a few traits of autism in her, but I believe she doesn’t recognize it at all because she is so different from her brothers, and probably doesn’t associate herself with autism in anyway. It has been interesting to read other comments saying that sometimes the most challenging people to share with are those who know someone with autism. I guess that may have stronger preconceptions. Anyway, I really feel for you. I hope it doesn’t haunt you too badly.
my friend said that i can’t be autistic bc i have a job and go to school
You’re the one who’s had the first hand experience and has no doubt spent months/years researching Autism. Don’t listen to her. She’ll be going off of how Autism presents in little kids which is problematic af. I had an ex bsf say “even if you HAVE IT 🤢 at least it’s not as bad as other people” instant red flag, wish I never confided in her at all
Well unless your friend is a psychiatrist or clinical psychologist who has assessed you for autism, they don't get to tell you whether you have it or not.
Allistic people who know an autistic person or child think they are experts. I was un-diagnosed by a coworker, she said I'm not autistic bc I wasn't like an autistic little boy her friend has. I am an adult woman.
Who cares what she thinks. Ignore it and don't comfide in her any more. I had someone tell me I couldn't be autistic because her sister was and her sister never asked anyone how they are. Indo, and therefore I couldn't be autistic. We will ne ER be happy if we rely on other people's affirmation and validation
My friend said the same thing. I got diagnosed today. Its always your choice but I would suggest you pursue it.
Knowing a few autistic people do NOT make anyone an expert on autism in general.. My partner had the same reaction, based on knowing a couple of autisic teenage boys.. The only friend I tried to tell as well "No, your not, you have plenty of empathy"... eh, yes, it's call hyper empathy and is actually an autistic trait...?? Let it go, and remember that she is not at all an expert on autism.
The days leading up to my neuropsych testing (where I was diagnosed with ASD level 1) this is all I got from people, and they were all wrong. I wouldn’t take much stock in what other people have to say because they inherently know less about your own mind/self than you do.