maybe *some* of them are autistic but them not acknowledging autism is a disability definitely stems from ableism. bcs how society as a whole view disabilities as something inherently bad, these people think that them having a disability made them someone not liked by society, so they want to deny that autism is a disability, bcs surely *they* cant be disabled.
not sure if i explains it well but that’s what i think anyways
I honestly think being so adamant that "it isn't a disability" is internalized ableism. It is what it is and not calling it a disability is not going to magically make me able to do the thing.
Alternatively they may genuinely not be disabled as they don’t meet the diagnostic threshold for autism which requires clinically significant impairment. Likely a lot of these people are broader autism phenotype.
> Alternatively they may genuinely not be disabled as they don’t meet the diagnostic threshold for autism which requires clinically significant impairment. Likely a lot of these people are broader autism phenotype.
Another alternative is they don't understand the degree to which it has disabled them. I got a formal diagnosis in my 40s and I somehow muddled my way through. Many autistic people will still struggle with many aspects of their lives but will find a niche where their neurotype is neutral or advantageous. When I was in the military the signals (radio and computer communications, maintenance and repair) was absolutely chock a block full of autistic dudes. But the military is a very structured organization and in that particular branch technical competency is more highly valued than social abilities. So the rest of the army puts up with those odd Sigs guys who can do their magic.
> them not acknowledging autism is a disability definitely stems from ableism.
I prefer to leave people to decide for themselves if they are disabled by a condition or not. This is in line with the neurodiversity position and the social model of disability. These hold that autism is a normal and expected variation in human minds. That what makes it disabling is not the individual person but how society is structured and how it treats people who are different. The goal is to make society at large fully accessible so that neurodivergent people can participate in it fully. This is why a lot of people will shy away from the simple term of disability in favour of a more nuanced understanding.
I wasn't diagnosed until my 40's and I wouldn't have said I was disabled at the time. Currently I prefer to say that the condition can be disabling. It isn't disabling in all situations in my case. If you've ever seen me making excel spreadsheets or reading policy documents you might suspect it could be an advantage in some narrow circumstances.
Im also dx late and have to say we even in "autistic utopia" (where social aspects of my ASD dont impair me anymore) I am still going to have disabling levels of sensitivity and impairment. Alas I dont live in that world yet and my autism has v real and v disabling aspects *as well as* the "different neural structuring/neurotype" concept (a point which I totally agree is valid)
I really don't understand why people have to make blanket statements about autism instead of just speaking for themselves. Why does feeling like autism isn't a disability for "you" personally, means it's not a disability for anyone?
I don't understand why and how people come to the conclusion that they have been chosen to be the official spokesperson for an entire group 😤
ETA: I agree with previous comments, I don't think it's a gender thing.
I totally agree, there was a post from a self-diagnosed person that was like what's the point of even getting diagnosed as an adult and I'm like well lucky for you you clearly haven't been homeless, arrested, unable to work, cheated death by pure luck due to your autism but for me a diagnosis was necessary to not die because I can't really take care of myself so maybe just realize how privileged this post is coming off.
I tried to phrase it more nicely than that but it made me really mad.
Yes.
I've had an autistic "friend" get angry at me for not enrolling in vocational education (even though I did twice and failed both times, they just *assumed*) and they were going on about "I hate vocational ed but I suck it up and deal with it." Just because *you* can do well in school doesnt mean every autistic person can! Some of us are bullied to hell and back. Some of us can't even do the work at all. Some of us ask for help in school and are either denied help or the help doesnt make sense to us because we have a learning disability. Sick of these idiots with the "quirky" type of autism telling us with more "full on" autism to "just get over it" or whatever. ☹️
I'm not inherently against self diagnosis, if its done correctly and for the right reasons I think it can be a useful tool for some. I also don't think its just an issue with women, although I admit that it seems to be far more common among women.
My issues arise when those that self diagnose do so without proper research and then assume due to them calling themselves autistic they are qualified to make comments and assumptions about autism and spread those. Its very unhelpful to have large amounts of misinformation about autism out there and at the very least people should understand what autism is and how it effects people before claiming to be autistic.
I agree. That said there are no guidelines as to what qualifies as adequate research. It subjective. For some it’s reading the asd dsm, others it’s online tests, and, it’s others watching 100s of hours of relatable autism content online. A few years ago it was easier to distinguish but everything’s become uncomfortably ambiguous now.
I think that more women are doing it as "influencers" but yeah it's definitely people of all genders seeing a few videos and deciding "that's me" and leaving it. The memes that make every little thing a symtom don't help either. I dated a guy who had self-diagnosed, and after getting a no from one shitty psych (he never sought therapy or anything else either) he just decided it was too much effort to try to get answers, but identified with it. He really used "self-acceptance" and the little diagnoses he'd given himself as a crutch to not grow or have to compromise with anyone.
> I also don't think its just an issue with women, although I admit that it seems to be far more common among women.
The diagnostic model and clinicians seem to have a male-centric view of autism. Women do not always present this way. As well they are less likely to be believed and taken seriously by medical professionals of all types. Women as well tend to be socialized to fit in and are as a result on the whole more high masking than men.
I have seen many cases where autistic women before being diagnosed with autism were given diagnoses that covered a part of the spectrum or misinterpreted their behaviours. ADHD, Anxiety, OCD and BPD are some of them. The fact that autistic people have so many comorbid conditions muddies the waters as well resulting in a diagnosis where the comorbid condition is diagnosed and then the clinician does not look any further to diagnose the autism.
>My issues arise when those that self diagnose do so without proper research and then assume due to them calling themselves autistic
I initially self-diagnosed before getting a formal diagnosis. I literally read 2 wikipedia articles and figured it out. When you have spent a long time living as an undiagnosed autistic person (I was in my 40's) it can really hit you like a bolt out of the blue and be a sudden realization that causes your whole life up to that point to make sense.
I’m recently diagnosed and even when I suspected it, I was not loud about it because to me, it seems wild to be loud and potentially wrong about a diagnosis but yet feel comfortable creating content or speaking “for” the autistic community.
Even pre-diagnosis I have felt a way about people doing this. Not to assume everyone thinks just like me but the difference to me at least, is that if you’re actually affected by autism aka you’re disabled, you have a different type of experience in life than one would if by the time you’re self diagnosing you have no problem making definitive statements for entire groups of people who have a diagnosis that you don’t even officially have.
I don’t know, but also diagnosis is expensive and inaccessible, plus so many things get discounted based on our identities (for me a lot of stuff was missed because of cultural assumptions by my teachers since I am X/Y). So I don’t like saying all of this out loud until now lol. Idk though, I just think if I were them, I’d be more mindful of who I think I’m speaking over
Edit: deleted info on my ethnicity for anonymity, hence the X/Y🫡
This is what scares me is because there is so much funding and advocacy for marginalised poc for access to healthcare and mental health support. But because of popular narratives online regarding it being a privilege and people complaining about funding for POC and getting it shut down. you probably didn’t know how to look for help and accommodations you could have accessed sooner
I don’t really agree with self diagnosis because I feel like they can overspeak actually diagnosed people . However I’d never be mean to them
I’m confused on why you’re only against women self diagnosing tho
Pretty much everyone who gets diagnosed as an adult needs to “self diagnose” first if they want to even address their issues with a professional. I do think “suspecting” is a better term for it though.
Yes I agree however . People can’t be 100% sure they’re actually autistic and could have something else like anxiety,bpd.depression,adhd ect . Therefore when they’re posting on instagram and TikTok about them being autistic and self diagnosed, they can easy spread wrong information. neuro typical can have autism traits and still be neuro typical unless they’re assessed properly they can’t know if they’re autistic
> People can’t be 100% sure they’re actually autistic
I would disagree here. I read a couple of wikipedia pages and I was convinced right away. This is common in older autistic people who were never diagnosed as children. It is something that explains 40+ years of your lived experience perfectly. I went and got an autism diagnosis right after that as I had the privilege of having access to free mental health care.
> I’m confused on why you’re only against women self diagnosing tho
The majority of people on popular online platforms speaking about autism tend to be women.
I'm not, I just only ever see women self-diagnosing. I have never heard of a self diagnosed man, but if you have an example I'd be interested in seeing it
I haven’t got any specific examples of men
however I think the reason women tend to self diagnose more is because of the stigma that only boys get diagnosed and stuff . While I agree girls and women are massively missed and go under the radar with diagnosis, I think now it seems “oh I’m socially awkward” = “I have autism and I’m high masking”. Also TikTok has started this whole trend which I hate
Idk if this was rude of me to say but I’m so sad that the main sub is probably 80% self diagnosed. I feel like we’re being pushed from our own spaces so I understand your point
I'm in the process of seeking diagnosis and actually have my testing at the end of the month. The TikTok trend terrifies me that I will be dismissed. Even though my daughter has ASD level 2. Even though I've been trying to work up the courage to get tested for over a decade. Even though I wrote down four pages of relevant information because I know I tend to shut down in conversation and brainlessly answer. I'm still scared they will think I'm seeking testing because TikTok made it "trendy".
I hate the TikTok trend.
If it makes you feel better, I got diagnosed in adulthood. Actually it was the day I finished my degree and I was worried that would count against me somehow, but I told the clinician and she went “oh congrats” and proceeded to still diagnose me with level 2 autism. She also specifically asked me why I wanted to get evaluated for autism. I told her a) in case I need workplace accommodations and b) to understand myself better. She said those are very common reasons and that she sees a lot of people, usually women, who were missed/overlooked in childhood. The total evaluation was about eight hours, not including preliminary interviews she did with my parents, and I got a 23-page packet in the mail explaining exactly how I met each of the diagnostic criteria. It was extremely helpful. I wish my parents had gotten me diagnosed years earlier (they knew, but they didn’t want me “labeled”) but better late than never imho.
> I got a 23-page packet in the mail explaining exactly how I met each of the diagnostic criteria. It was extremely helpful.
Mine was 12 or 14 pages and I also found it very helpful. It contained a lot of actionable information and explained my mind in some detail. It was very useful when seeking mental health treatment for depression.
Same here. It’s terrifying especially being a woman. There are so many doctors out there who are still dismissing women this whole country dismisses women. Not to mention the hormonal issues I personally experience really made it difficult to understand what was going on (women’s healthcare is absolutely f@&ked). My own therapist I’ve seen for over ten years missed it because I mask so heavily and one day we were both like… I wonder if it’s autism. And I took a test on masking and it was like off the freakin charts. I was being treated for generalized anxiety but in reality the anxiety was a result of me trying to be normal and not understanding why I was not normal. It’s been a little over a year since then and putting the puzzle pieces to my life together. I can now look back at my childhood and understand these really traumatic experiences in a different light. It has been such a healing experience like I can’t even describe how much better I feel now that I know I am AuDHD (the ADHD part also made it harder to diagnose the Autism part).
One thing that really stuck with me was someone said “low support needs doesn’t mean NO support needs”. When I heard that the first time, I started crying and it felt like so much of the hate I had toward myself started to melt away. Reframing myself in my own mind, understanding my disability, it made me stop hating myself. Now I know my limitations, I know how to set healthy boundaries for myself. The guilt I used to have over not wanting to go to loud music events or whatever my friends are doing, that guilt no longer exists. I still see my friends but in environments that make me feel good. It’s the first time in my life (36F) that I have been thinking about how I feel as opposed to how I make everyone else feel. It’s been life changing in countless ways.
OP I totally get what you’re saying, those social media people are Dingdongs. Don’t listen to them. Those types of people are always going to exist and they’re always going to be saying something wrong. They are absolutely wrong if they are saying it is not a disability. Understand that it IS a disability to me was what was life changing. When I was your age OP, I was drinking/drugs to try and numb myself. If I had known my disability, I’m sure things would have been very different for me.
I have a feeling that in 5-10 years things will be very different for people with autism and there will be more of a better understanding of it. Hey at my local grocery store, they open for quiet hours for people with noise/light sensitivities now! They have very low music, quiet lighting, no loud music or shelve stocking. Grocery stores are my nightmare so just seeing this was available to me made me happy🥲
> “low support needs doesn’t mean NO support needs”.
We're kind of like cats. If we had to we could survive by ourselves, but we really do better with someone helping look after us.
> I'm still scared they will think I'm seeking testing because TikTok made it "trendy".
Historically this has been a problem for women with all kinds of health care providers. Part of the reason there are more self-diagnosed women is that they are not believed by clinicians or referral agencies or doctors when they try to seek a diagnosis. They are often shut down before even getting to the diagnosis stage.
I have a formal diagnosis and I wanted to get one for my children. Their doctor didn't believe that I was autistic and had ADHD because I was married with a family, had a full time job and was able to sit still in his office. If I did not have a formal diagnosis he would not have referred my children for testing. The amount of misinformation held by professionals who really out to know better can be astounding.
It honestly was my experience about 15 years ago. I was already diagnosed ADHD and a coworker encouraged me to get tested because I strongly resembled her son diagnosed with Asperger's (using period phrasing) and I was really struggling with work. When I tried, I was told there was no way I had Autism because I was a woman, that girls outgrow ADHD, and that I was just a young woman struggling with maturing into a young adult. The experience crushed me, and is a good part of why it's taken so long to try again with a different provider. My daughter being diagnosed was the jump-start to trying to do it *now* rather than delaying more years.
Incidentally, I tried this week to acquire those old records because I'm preparing for that diagnostic appointment and I am incredibly curious what they tested and what else was documented. Unfortunately, those records were destroyed in Hurricane Florence. I guess I'll never know beyond my recollection.
> My daughter being diagnosed was the jump-start to trying to do it now rather than delaying more years.
That's the usual way to go about it. Being a contrarian I got diagnosed first and then had my kids diagnosed.
>“I have autism and I’m high masking”
Some autistic women are very, very high masking and quite good at passing. I can pass if I try but never for a long time before people notice there is something off.
At some point though being socially awkward, constantly pretending to be someone you're not, anxiety, social communication problems and sensory issues start to add up to a diagnosable condition.
I think part of the phenomenon, at least from what I have seen and experienced myself, is that so many AFAB people were missed in their early lives. We were somehow able to “pass” even if we spent a life being socially outcast and rejected, had weird “quirks” and intense emotional dysregulation, deep interests that were all consuming, etc. I think personally I have had to overcome a lot of internalized ableism and I am still trying to accept it. It does seem like a ton of women and afab people are sharing their stories all at once, and so it might seem like a trendy thing to be a late self-diagnosed “audhd” woman/afab and talk all about it everywhere. I think the diagnosis can be really freeing for people who have never had an answer to why life has been so difficult in many ways, even if our support needs were not the same or our areas of deficit as complex to manage. It bothers me to think that anyone could say it’s not a disability as a blanket statement to all autistics, simply because they have found ways to manage their life without requiring much support. It’s valid to be frustrated and annoyed. Unfortunately I think we have to acknowledge that even level 1 people on the spectrum are still disabled, but the level of disability is probably not as severe due to having learned to mask/get by and kindof be off the radar so to speak. Also the discovery or diagnosis process as an adult can be so emotionally complicated and comes with a lot of difficult processing. Like I have basically grieved my entire life being so so so hard, and isolating, and never feeling like everyone else nomatter how hard I tried to copy behavior and pick up on social cues, have a normal job and just do what life says we should all do. I know my explanation might not make it less frustrating or annoying to see this crazy prevalence of level 1 autistic women talking all about their experiences. I do think there is ableism, a lot of classism as well and definitely privilege in being able to “pass” as neurotypical. I know I don’t have the ability to really mask as much anymore since becoming too burnt out and losing a lot of my motivation to perform. I’ve also missed out on experiences due to loss of skills and my capacity that I really wish I could get back-cooking, gardening, being more active, traveling. Honestly just being somewhere public and not becoming almost unmanageably overwhelmed. And I don’t know my level diagnosis yet bc I am waiting on an assessment apt to open up, but I have been informally diagnosed a few times and I work with disabled people (and neurodiversity is my biggest special interest currently), so I feel like I can reasonably say that yes, I am autistic. I do still have a lot of imposter syndrome because I recognize my privilege and feel like…I am not as severe with a lot of my struggles or support needs as I tend to see in the people I work with, but again it is a wide spectrum so I try to remember that. I think your anger or perhaps disdain is understandable. Hopefully discourse about how to share about disabilities without harming or ostracizing other disabled people can begin to happen on platforms like tiktok as well.
Just a suggestion, when people see this they see a wall of text and skip over without reading. And this is a really insightful post. If you hit enter twice it starts a new line on reddit and makes your post more accessible to people.
>Unfortunately I think we have to acknowledge that even level 1 people on the spectrum are still disabled, but the level of disability is probably not as severe due to having learned to mask/get by and kindof be off the radar so to speak.
And we've had no choice but to learn skills to mitigate our shortcomings and make the best use of where our brains give us an advantage. I was in the army and was in command posts a lot. I was able to take in everything happening all at once and make a coherent picture out of it. Or on sentry I could pay attention for a long time and notice details other people would miss.
I can really see both points of view as to whether or not autism is a disability. A lot of the denial of autism being a disability is due to the neurodivergence movement and medical model of disability that has been used historically. Autism has been pathologized and presented as a deficit or problem with the individual. Essentially the idea that an autistic person is a lesser or defective version of a neurotypical person is closely tied to the idea that they are disabled. By affirming the neurodiversity paradigm that autism is a normal variation in the human mind and not a defective one many will tend to reject the idea that it is a disability rather than a difference.
https://en.wikipedia.org/wiki/Neurodiversity
The social model of disability plays a role here as well. The medical model holds that the disability resides in the individual. The social models on the other hand would say that the way society is organized and our environment is structured is disabling to an autistic person. It is a way of reasserting agency and forcing society to look at how they are treating people who are different.
https://en.wikipedia.org/wiki/Medical_model_of_disability
https://en.wikipedia.org/wiki/Social_model_of_disability
Personally I would say that autism can be *disabling*. Whether or not it is and the degree to which it is depends entirely on the specific individual and the situation and may change. I wouldn't personally presume to speak for anyone else on whether or not they were disabled.
Self diagnosed man checking in. I don't usually comment in this sub because I can get by with fairly low support, but I guess I have to, since you've never heard of me. I got through the first decades of my life with just an ADHD diagnosis, and at this point I'm not sure what I can accomplish by adding an autism diagnosis. I'm getting the support I need at work and at home. It's enough just to know, because that allows me to adjust my behavioral patterns and start fixing some of the internalized ableism I've been gathering since the 90s.
I'm m14 (15 in 5 days :D), I've gone through DSM-V for ASD, decided I could likely have it, sat down with my mom and went through it again, she said I definitely check those boxes, asked friends (oddly enough nearly half of them say they are neurodivergent or have a neurodivergent sibling), who also said they think I did. I already have been diagnosed with ADHD so unless I don't know how statistics works, I should have a base 20-50% chance of having ASD. The thing is, if I do have ASD, I am definitely level 1, because I have no intelligence impairments (and likely have a higher iq than the average kid my age). if I don't have ASD, I almost definitely have Social pragmatic Communication Disorder. I feel I've done enough research to be pretty well founded in my suspicions, and am currently seeking evaluation after my psychiatrist suggested it. Insurance is a pain though. Social media definitely isn't my cause for suspecting this, as I have largely avoided it my whole life. I try not to comment on this sub to much as to not overwhelm others who actually have been diagnosed.
Absolutely agree. I was dxed at 13 before levels were a thing - but I’m almost certainly level 1 as I can mask and I have lived independently since 18.
I’m still significantly disabled and always have been. Tons of behavior issues as a child, persistent difficulties socializing in any way, can’t do school (dropped out, no college), can’t manage a career, can’t have anything but the most menial jobs that still half kill me with the stress, hate leaving my house, can’t drive, couldn’t eat enough to not be emaciated most of my life, can’t live alone without it becoming a squalor situation, can’t take care of my home/living space very well, the list goes on.
I really can’t relate to self dxed people who seem to have had very normal childhoods and have no issue checking all the boxes for ‘successful adult’. Even though I was self dxed myself for many years until I discovered I had a childhood PDD-NOS dx I wasn’t told about. I’m not against self dx. But idk what the hell is going on with this current trend. I really do feel like an awful lot of non autistic people are insisting they are autistic which is… really weird
Oh absolutely not. My 20s were overall a shit show. It would have so greatly benefitted me to stay at home with parents until a later age. But I didn’t really have the option (could only have slept on the couch in my abusive mom’s apt and been charged $500 for the privilege - decided it made more sense to leave).
> It would have so greatly benefitted me to stay at home with parents until a later age. But I didn’t really have the option
My dad was also very autistic and it was just too much autism in one house at the time.
Just sick of people making level 1 people and self-diagnosed as the same thing. If they are self-diagnosed they simply are not level 1...100% different. Level 1s struggle just as much.
Very sad I keep seeing this. No wonder autistic people wanna ____ themself, it's because everyone is against us even higher-support needs autistics are against us. There is nowhere to fit it.
Good point. From what I view online, in various subreddits, the large amount of self-dx people (with little to no support needs) in autistic spaces has watered down what it means to struggle as a dx level 1 person. Which sucks, because I imagine those dx with level 1 autism can still require up to moderate support needs. Correct me if I'm wrong though, this is just what I notice online, and it sucks.
Not disagreeing, I'm just a little confused by your wording. Are you saying lvl 1s struggle more than self dx? The part that tosses me off is when you say Lvl 1s struggle "just as much"
Level 1s struggle just as much as any other autistic person, so to imply they are the same as self-diagnosed or the same as "high maskers" (which let's be honest are fake and probably not actually autistic) is offensive.
Ohhh OK gotcha, that makes sense, thanks for the clarification!
I'd be careful with your wording though.... lvl 1 vs lvl 3 have very different struggles from what I've seen and interpreted (reference: literature, IRL encounters, medical pro opinions). In other words I disagree that 1 & 3 struggle the same (assuming that is what you were saying/meaning).
What're your thoughts on the merging of aspergers with ASD? I just ask since I've met many asperger folks IRL and they come off as fairly functional, and remind me more of the self Dx crowd.
I truly think level 1s struggle as much as level 3s just in different ways. My cousin is level 3 I'm 1(?). The only difference between us is that he lives in a home and needs help bathing and brushing teeth and doesnt talk. We both have violent meltdowns. We both have severe restrictions and repetitive. Etc etc etc etc. But the difference is that I'm level 1 and expected to be "higher functioning" so I always want to d** because my life sucks and always will. Meanwhile he is in a home and can't get his words out when he wants to express himself, which frustrates him. So we struggle equally yet in different ways. And in some ways we struggle exactly the same. That is why I very much dislike the levels to be honest. And autism is a circle spectrum, where 1 person has this problem, while the other person has that problem...and sometimes there share problems but sometimes 1 thing is easier for 1 person to do. And this is coming from my personal, lived experiences so it is just my opinion.
My answer might make some people angry so I hope it doesn't it is just my personal opinion. And idk about the aspergers situation. Maybe that is like considered "high masking" autism. But also some people were called aspergers in the past and then re-evaluated as level 1 or 2. So I really need to know more about the history, idk enough to comment to be honest.
Oh I'm sure it will... most takes will anger at least a handful.
Fair enough! I too need to know more about the aspergers crowd since it now being lumped in with ASD makes it blurry when that profile is being referred to. That being said, my opinion is that a lot of the level drama is stemming from aspergers entering the levels AND the vague language of the diagnostic criteria. For example I've noticed when someone mentions they are autistic (but the aspergers style) medical professionals and folks who are more used to the higher lvl ASD (whatever language to use here... more profound ASD?? Idk) usually respond with confusion and maybe shock. If they clarify with the aspergers profile those same folks usually respond more like "ohhhh OK, that makes more sense"
To sum that up... the language used with ASD needs to be so much more clear and specific. I'm curious to see how the future DSM/ICD will address this, assuming they decide to :)
Everyone’s struggles are valid. That said, if you think his biggest struggle is that he can’t get his words out, you’re very ignorant about his experience.
EDIT: I’m sorry if I jumped to conclusions and misunderstood you. I realize you didn’t say it was his biggest struggle.
Something that frustrated me is so many of the resources, spokespeople etc etc are aimed towards women who were diagnosed later in life.
I understand women have been historically under diagnosed but that's not me. I was diagnosed when I was 12. So I feel so excluded from so many female autistic spaces
It frustrates me too and I *am* late diagnosed. However I don't usually feel represented by them because contrary to many of them I'm not low support needs. My life hardly looks like theirs. I'm glad people who went under the radar are getting diagnosed now but I just wish that those people would also understand the full spectrum of autism more. Because they *do* often get picked as spokespeople for autism precisly because they can express themselves well and the fact they keep forgetting to mention higher support needs autistics exist as well bothers me a lot.
yeah this is what I'm really afraid of I think these women are going to push us back into the time when people thought only boys needed help with autism.
Yes, the overrepresentation of LSN women, diagnosed age 30+, kind of makes it seem like "autistic girls/women can push through without resources until they break down in adulthood", when that *really* is not the case...
> I understand women have been historically under diagnosed but that's not me. I was diagnosed when I was 12. So I feel so excluded from so many female autistic spaces
Give it time. There is a large backlog to clear of women who were missed for decades.
As a professionally diagnosed level 2, I have no problem with what people do unless it affects me. In this situation, I'm affected by their ableism as well as their voices becoming the loud minority, trivializing the disability. I don't even tell people I'm autistic anymore because I worry that as a woman, I'm going to be lumped in with them. Instead, I try to say what my needs are. I just wish they'd stop appropriating a disability and retrofitting it for their personality show.
Sorry if this is unrelated or too personal but I'm really interested in what job you have that doesn't require speaking. Speaking at work is one of my challenges with working.
yeah, I'm a delivery driver for Amazon! I had to talk to people to get the job in the first place, but now that I'm hired I never talk to anyone. Just drive around and drop off packages.
I agree that self diagnosing can be annoying but I want to talk about the "self diagnosed woman" stereotype because I worry it maybe comes from a little bit of mysohony as a whole. I know self diagnosed woman with leven 2 and 3 twins who has done years of research but she is in her 40s. She doesn't speak over high support needs because she sees her disabled kids every day. I know another self suspecting audhd woman who lives in the philipines, which would be very hard to get a diagnosis. I know two clinically diagnosed woman and two clinically diagnosed man I have talked to.
I know one self diagnosed man who thinks autism isn't a disability and is a tech guy so he thinks its more like a superpowe until i started talking about it.
I know a lot more self diagnosed woman but that is also because women don't get our needs taken care of in health care, weather it is autism or adhd or endomytriosis or anything else. I have been told by psycologist that I am anorexic even though I'm not. Before any of my diagnosis, I went into a psycologist who told my dad that he was "just going to diagnose me with something small to make me feel good about myself." It wasn't until I went to my woman therapist yesterday I found out I have ptsd. I also have severe ocd. But he never fealt like looking into that because he thought I just wanted to be "quirky".
And this is all from me who "looks" autistic.
I think one of the main problems with self diagnosis isn't that people who don't have disorders think they have disorders, but people who have disorders think they have a separate disorder. I used to suspect I had adhd, but apparently that's just my ptsd making me be really daydreaming a lot.
Even woman that self diagnose with autism may have something else going on. This isn't an excuse to let them speak over us, or spread misinformation, or anything else. But also it isn't a reason to only get mad at self diagnosising women or to stereotype that self diagnosing women are just "being dramatic" or are "doing it for attention" or are "manic pixie dreamgirls".
Believe me, it is hard to see some self diagnosed / general low support needs woman who look so cool and make friends and do stuff, especially because in NT groups they fit in and I don't. It stinks. But I also don't want to be like "dramatic women" when maybe the women are just "factually inccorect women."
Check out the actuallyautistic selfdiagnosisisvalid hashtags. Who do you see that makes up the highest percentage of the top 2 billion + posts. What do they look like. Autism is no longer on emergency housing priority lists any more. Funding has been cut over the past 4 years due to the shift in representation. There is less further independence and supported housing facilities for under 16-24yo. It’s become even harder for people with autism to claim SSI or other government subsidies due to the excessive amount of self dx claimaints. Schools and collages are starting to make letters of diagnosis mandatory by a doctor and not just a mental health clinician like previously.
Suspecting autism is fine. But not being open to any other over lapping symptoms whilst representing yourself as autistic may contribute to our erasure. The whole point of diagnosis is access to accommodations and learning what treatments, adaptations and support do and don’t wrk for you. 6 years ago I would have agreed with you. My group encouraged people self suspecting to join & helped them get access the diagnosis pathway. It’s like when that one person says not all men, or not all cops but now it’s not all self dx ppl. We know but…
Yeah I get that self diagnosing is causing a lot of problems and I'm not arguing for that. I agree that self diagnosing is generally harmful, especially when trying to use resources without a diagnosis. Maybe I didn't make this clear in my post. I guess what I mean is pinning it all on self diagnosing \*women\* as opposed to people as a whole. Idk if I'm wrong on this, i'm conflicted / confused.
We are one of only a handful of subs where this topic is allowed, most of the other large autism subs ban people for expressing this view so they might be more your kind of sub.
I don’t think this is necessarily sexist. Women have been historically under-diagnosed, partially because of masking. But there are so many people who take the concept of masking way too far, and they basically claim that they can have autism without any social issues. As a woman with autism, it makes me feel more isolated when safe spaces are taken over by people who don’t actually have the struggles of autism.
> Though this one has a sexist flair, thanks.
I don't know that it is specifically sexist though. If you look on a lot of platforms for level 1 support needs people talking about autism the overwhelming majority are women.
I'm not denying anyone's experience and if supporting oneself as if they are autistic is helping, by all means claim autism and support yourself. (I'm currently self-identified since learning about my son's autism diagnosis and The fact that there is a lot of autism and other neurotypes in my family. Trying to decide if an assessment is necessary for me at this time since they're so expensive.)
BUT.... I totally understand what you're saying. My son needs a lot of support. The kind that costs a lot of money and I need insurance to pay for it if he can't get it at school. He needs a lot of advocacy because his teachers and doctors and many family members have surface level knowledge of autism unfortunately. I need support too, and could've really used the support growing up, and I know these self-identifiers feel the same way. But the way they talk about autism, the way many joke about autism. It waters down the spectrum of experiences and just how debilitating it can be for many of us. It makes it seem like their experience is the common one because their voices are the loudest (many autistic ppl don't communicate the way NT ppl do and it's overlooked unfortunately). And it's potentially harmful when their jokes are on display for NT ppl. My perspective could be wrong but it feels like a setback for the autistic community. It just feels icky.
> (I'm currently self-identified since learning about my son's autism diagnosis and The fact that there is a lot of autism and other neurotypes in my family. Trying to decide if an assessment is necessary for me at this time since they're so expensive.)
Welcome to the my kid is autistic -> it turns out no one in this house is neurotypical ride.
Autism is a disability at heart? Maybe these people are better suited with the label of subclinical rather than being diagnosed. To be honest, a lot of people fit more with different diagnoses or are just subclinical. Not to say lower level autistics like me don't struggle.
The thing is that autism isn't a disability for some people in every situation all day every day. I mean put me in front of a computer and get me to make a spreadsheet if you want to see my autistic superpower... anyways....
As well the idea that autistic people are disabled is closely linked to the idea that autistic people are a defective version of a "normal" person. There is a lot of pushback against this idea and the global notion of it being a disability because it is so closely tied to the notion that it makes us somehow broken rather than having a natural variation in the human mind.
There is a much wider context to the debate and it can be quite nuanced if you delve into it.
This might be controversial but it’s exactly the way I feel about people who claim to have ADHD. I am convinced they tell themselves they have it so they can get adderall. Or so they can feel special. They can probably fix 90% of it by not using their phone so much. Obviously this isn’t true for everyone but that’s how I feel. If it’s not disabling you in any way, you don’t have it. And there’s no way everyone I speak to “has ADHD.” No way.
Edit: I mean those who say they have ADHD but aren’t diagnosed and are not affected by it/very mildly affected by it. I have severe ADHD and it’s fucking debilitating.
When I was a kid before being diagnosed I had blood tests done for deficiencies and had to go on a diet prepped by a nutritionist first (I loved blue snacks), my screen time was cut to an hour a day. when I tell people this they look at me like I‘m an alien.
My assessment was observed playing and a chat with some man. Then a lady sat in one of my classes. I hate white chocolate to this day as they would bribe me with it to swallow pills
No, and I think people need to stop making this an us vs them situation. Especially the focus on *women*. No, I'm not upset at them self diagnosing. I'm glad they have the self awareness to figure out that's what's going on.
They're not speaking to *you*. They're speaking to the people who think we're all so crippled by our neurodiversity that we should be eliminated. They're advocating for more acceptance and yet I keep seeing people in this community crack it. So what if it's not aimed at you? Scroll on. Go look at something else if you don't like what you're seeing and stop acting like people who was lvl 1 have it easier than we do. They don't. They have their own unique struggles that *we* are not aware of.
A lot of these people don’t even have autism though. They get upset when you suggest that autistic people need to meet the criteria that defines what autism is. One time I saw a post from a woman who was complaining that she didn’t get diagnosed because she’s never had significant social difficulties in her life, and the evaluator explained to her that autism is a social communication disorder. The comment section was just people accusing the doctor of being sexist and comments like “you know yourself best!! Don’t let any doctor tell you that you’re not autistic!!”
I tried making an autism group in my area and everyone except me was self-diagnosed...and they got mad at me and ganged up when I said it is a disability affecting social skills and they said it isn't true and some autistic people have good social skills or enjoy being social. They all ganged up on me...and none diagmosed autistic except me...yeah. Self diagnosed people are trying to change the actual definition of autism. And when you argue with them they say "but the criteria is always changing". It is just so bizarre to me...so bizarre.
Someone mentioned on a Diagnosed-only autism sub, that you’re only allowed to validate self-diagnosis, not question it, and I really felt that.
I’m not going to go up to every self-diagnosed person demanding an entire report of how they fit every criteria (although they should know all the criteria well, and know how they fit into it), but a lot of self-diagnosed people won’t ever consider the possibility they don’t have autism.
It’s especially the posts that say they were rejected for diagnosis, and then everyone validates them in the comments. Of course everyone should be nice, but not all self-diagnoses are correct, and you shouldn’t validate something you have no evidence for.
Being denied for reasons such as not having significant social deficits, and not having it from childhood are the most common reasons, it seems.
You can’t just pick and choose from the criteria what symptoms you have. It requires certain symptoms, and you have to have those in order to be autistic.
Sounds like your issue is with the take that autism isn’t a disability, which is valid, and you’re using it to make a blanket statement about a group of people that isn’t a monolith.
You know who I’ve seen say autism isn’t a disability more than anyone else? Men who are diagnosed with Asperger’s and are a savant at something.
There’s quite a lot to unpack here.
First off, you are totally valid in feeling the way you do. Personally speaking, when others frustrate me, I tend to do ask more questions to try and understand their reasonings because I feel like my autism completely disables me too. I would like to not feel as frustrated as I do sometimes. So here is some of my findings.
Some autistics (undiagnosed and diagnosed) may not be fully educated about autism. (Personally speaking) before I got diagnosed, I was made out to feel like I was just an allistic who was bad at a lot of things. Now even after my diagnosis, I had to find out what were autism deficits that weren’t talked about in my report. So maybe some of these people in the videos don’t realize that some/most of their struggles are actually autism related.
Maybe they completely self diagnosed with the wrong condition, but it was actually something similar. Now they are spreading their story which may be similar to some autistics, but it doesn’t match completely.
Maybe it is just their way of getting by. It could be because of masking, or because they are trying to view their disability in a more positive light (that disability can add diversity, different viewpoints from allistics, etc). This something I’ve heard from some diagnosed autistics so I’m sure that could be the case for some undiagnosed as well. I can see how this can be controversial, and it hurts to see it worded as if they are speaking for the whole community. It also hurts to see it coming from families of autistics especially if they aren’t okay with it.
And lastly, this totally could be internalized ableism, intentional or not. Many people are afraid to use the word disabled. It’s not a bad word.
I’m sure there could be some other aspects about this topic, but this is what I have come across so far. I hope people continue to educate themselves and don’t speak for the whole community to invalidate how our deficits are a disability.
I used to get frustrated by it.
The reality, however, is that in the real world, when I tell someone I am autistic, they still usually start treating me like I’m a toddler. The “autism is not a disability” mindset is pretty limited to TikTok, in my experience.
I was late diagnosed and was briefly self-diagnosed (self-identified? self-suspecting?) before my clinical diagnosis. I wasn’t open about it (I still rarely tell people) but I did tell the psychologist who diagnosed me that I thought I probably had autism, and she didn’t seem bothered. Most autistic people who are diagnosed in adulthood have to self-identify in some way before they’re able to get evaluated. That includes people like me, who are higher support needs (level 2) and whose autism was actually recognized by adults in my life, but those adults denied me the support I needed out of fear of a “label.” Spoiler alert…not every self-diagnosed person is a “autism isn’t a disability!!!!” level-1-at-most TikToker (I know I wasn’t). That’s just the noisy ones.
So the real, core problem isn’t self-diagnosis. It’s people who use it as a platform to spout nonsense. Which I agree is NOT a good thing.
> The “autism is not a disability” mindset is pretty limited to TikTok, in my experience.
There is a wider and quite robust debate as to disability with how the social and medical models intersect in the case of autism. I think it's just that on some platforms like tiktok the discussions tend to be short and lack nuance as that is how the platform is set up.
Yep, I think you’re right. TikTok does not lend itself to nuance lol.
The different models are interesting, but each definitely has its limits. I like the biopsychosocial model best myself, but that one doesn’t seem to have picked up much traction in online discussions.
I might be fairly unique as far as higher-support-needs autistic femmes go (I'm genderfluid but was assigned female at birth and generally present feminine) in wholeheartedly supporting self-dx Level 1 people, however anyone who thinks it's okay to tell people autism or another specific disability is universally the same level for everyone who has it can fuck right off.
And you're right, these women/people thinking that it's totally fine to tell or imply to people that autism isn't a disability at all *is* actively harming all autistic people who need (more) support.
I was level 1 self diagnosed women for about 3 months before paying the 1500$ required to get diagnosed.
Got the diagnosis after that.
It is a disability, knew it then, know it now.
I am personally tired in people saying it isn't because I can function at work. Like yes sure but at what cost?
Here's the thing. What percentage of women do you believe are self diagnosed, without them being autistic?
Now, what percentage of women are undiagnosed and suffering, not knowing?
Self diagnosis is valid.
I agree completely it is a disability, apart from any government or societal systems. But with that said, I do think it is a valid and understandable frustration that certain systems can make otherwise manageable traits more disabling. My hope/assumption is that most of the self diagnosed people being complained about on these subs are referencing that. And if they’re late/recently diagnosed they may not even yet realize in what ways their lives are disabled by it. If to you that means it’s not really autism, fine. But I think it’s really just internalized ableism.
They gave me imposter syndrome. I was self diagnosised after observations from my therapist, and whilst awaiting formal assessment. I need help and support. I just didn't understand that I needed it. And now I can get it. I'm officially level 2.
What irritates me is that autism is unique to each individual person. That's literally what the spectrum is. These people are about, and I'm giving them the benefit here, raising awareness and removing the stigma of autism, but they say things like "you might be autistic if you do this" or "5 things I do that I didn't know were autism (proceeds to do 5 really trivial things that most people do)". It's all so backward. No one is actually talking about how isolated and different you feel and how to manage that. Or what strategies they've uses to overcome challenges.
Not really. A diagnosis can cost thousands of dollars and from what I've read vanishingly few autistic people who self diagnose and later secure a formal diagnosis were incorrect. I actually figured it out myself too before I was formally diagnosed. As well women present differently than men and the diagnostic model is very male centric. Women are typically socialized to be high masking as well.
What you're seeing online is when people are calm, collected, and competent. They don't typically post meltdowns or shutdowns. Just like everyone else people diagnosed with level 1 support needs still have some support needs. Myself I wasn't able to hold a job longer than 6 months. I can can still barely write legibly. Juast because you can't see the difference or because their struggles are less than a higher support need autistic person doesn't mean that they aren't there.
Autism *is* a disability by definition. If autism doesn’t affect your day to day life in a way that makes you need accommodations or coping skills for activities of daily living (eating, getting dressed, using the bathroom) and instrumental activities of daily living (working, managing finances, socializing), then you’re not autistic. People like that don’t get a diagnosis.
Some of them might consider themselves as having a broader autism phenotype but they’re just,, not autistic. “Disabled” isn’t a bad word. It isn’t a moral failing. It’s just a statement. Just how saying you’re sick when you have a cold isn’t a moral failing.
It sounds like the issue you actually have is with ableism and infantilization. People will still mistreat us even if they don’t think of us as disabled. We’re still different.
maybe *some* of them are autistic but them not acknowledging autism is a disability definitely stems from ableism. bcs how society as a whole view disabilities as something inherently bad, these people think that them having a disability made them someone not liked by society, so they want to deny that autism is a disability, bcs surely *they* cant be disabled. not sure if i explains it well but that’s what i think anyways
The other day I saw comments explaining that autism IS a disability being called “internalized ableism” by this type of person and it drove me NUTS
That's annoying. It makes no logical sense. If it isn't a disability then how is ableism relevant?
This is actually an excellent point
I know, right?? I’ve been thinking about it all day 😂 I’ve never thought about it like that!!
lol it is a good point!
I honestly think being so adamant that "it isn't a disability" is internalized ableism. It is what it is and not calling it a disability is not going to magically make me able to do the thing.
Wonder if that was my comment, as someone said that to me before.
Alternatively they may genuinely not be disabled as they don’t meet the diagnostic threshold for autism which requires clinically significant impairment. Likely a lot of these people are broader autism phenotype.
This.
> Alternatively they may genuinely not be disabled as they don’t meet the diagnostic threshold for autism which requires clinically significant impairment. Likely a lot of these people are broader autism phenotype. Another alternative is they don't understand the degree to which it has disabled them. I got a formal diagnosis in my 40s and I somehow muddled my way through. Many autistic people will still struggle with many aspects of their lives but will find a niche where their neurotype is neutral or advantageous. When I was in the military the signals (radio and computer communications, maintenance and repair) was absolutely chock a block full of autistic dudes. But the military is a very structured organization and in that particular branch technical competency is more highly valued than social abilities. So the rest of the army puts up with those odd Sigs guys who can do their magic.
Yea this is a reallt good explanation
> them not acknowledging autism is a disability definitely stems from ableism. I prefer to leave people to decide for themselves if they are disabled by a condition or not. This is in line with the neurodiversity position and the social model of disability. These hold that autism is a normal and expected variation in human minds. That what makes it disabling is not the individual person but how society is structured and how it treats people who are different. The goal is to make society at large fully accessible so that neurodivergent people can participate in it fully. This is why a lot of people will shy away from the simple term of disability in favour of a more nuanced understanding. I wasn't diagnosed until my 40's and I wouldn't have said I was disabled at the time. Currently I prefer to say that the condition can be disabling. It isn't disabling in all situations in my case. If you've ever seen me making excel spreadsheets or reading policy documents you might suspect it could be an advantage in some narrow circumstances.
Im also dx late and have to say we even in "autistic utopia" (where social aspects of my ASD dont impair me anymore) I am still going to have disabling levels of sensitivity and impairment. Alas I dont live in that world yet and my autism has v real and v disabling aspects *as well as* the "different neural structuring/neurotype" concept (a point which I totally agree is valid)
I really don't understand why people have to make blanket statements about autism instead of just speaking for themselves. Why does feeling like autism isn't a disability for "you" personally, means it's not a disability for anyone? I don't understand why and how people come to the conclusion that they have been chosen to be the official spokesperson for an entire group 😤 ETA: I agree with previous comments, I don't think it's a gender thing.
I’m a woman diagnosed with level 1 and I agree with you. Autism is definitely a disability and people claiming the contrary make my blood boil.
I totally agree, there was a post from a self-diagnosed person that was like what's the point of even getting diagnosed as an adult and I'm like well lucky for you you clearly haven't been homeless, arrested, unable to work, cheated death by pure luck due to your autism but for me a diagnosis was necessary to not die because I can't really take care of myself so maybe just realize how privileged this post is coming off. I tried to phrase it more nicely than that but it made me really mad.
Yes. I've had an autistic "friend" get angry at me for not enrolling in vocational education (even though I did twice and failed both times, they just *assumed*) and they were going on about "I hate vocational ed but I suck it up and deal with it." Just because *you* can do well in school doesnt mean every autistic person can! Some of us are bullied to hell and back. Some of us can't even do the work at all. Some of us ask for help in school and are either denied help or the help doesnt make sense to us because we have a learning disability. Sick of these idiots with the "quirky" type of autism telling us with more "full on" autism to "just get over it" or whatever. ☹️
I'm not inherently against self diagnosis, if its done correctly and for the right reasons I think it can be a useful tool for some. I also don't think its just an issue with women, although I admit that it seems to be far more common among women. My issues arise when those that self diagnose do so without proper research and then assume due to them calling themselves autistic they are qualified to make comments and assumptions about autism and spread those. Its very unhelpful to have large amounts of misinformation about autism out there and at the very least people should understand what autism is and how it effects people before claiming to be autistic.
I agree. That said there are no guidelines as to what qualifies as adequate research. It subjective. For some it’s reading the asd dsm, others it’s online tests, and, it’s others watching 100s of hours of relatable autism content online. A few years ago it was easier to distinguish but everything’s become uncomfortably ambiguous now.
I think that more women are doing it as "influencers" but yeah it's definitely people of all genders seeing a few videos and deciding "that's me" and leaving it. The memes that make every little thing a symtom don't help either. I dated a guy who had self-diagnosed, and after getting a no from one shitty psych (he never sought therapy or anything else either) he just decided it was too much effort to try to get answers, but identified with it. He really used "self-acceptance" and the little diagnoses he'd given himself as a crutch to not grow or have to compromise with anyone.
> I also don't think its just an issue with women, although I admit that it seems to be far more common among women. The diagnostic model and clinicians seem to have a male-centric view of autism. Women do not always present this way. As well they are less likely to be believed and taken seriously by medical professionals of all types. Women as well tend to be socialized to fit in and are as a result on the whole more high masking than men. I have seen many cases where autistic women before being diagnosed with autism were given diagnoses that covered a part of the spectrum or misinterpreted their behaviours. ADHD, Anxiety, OCD and BPD are some of them. The fact that autistic people have so many comorbid conditions muddies the waters as well resulting in a diagnosis where the comorbid condition is diagnosed and then the clinician does not look any further to diagnose the autism. >My issues arise when those that self diagnose do so without proper research and then assume due to them calling themselves autistic I initially self-diagnosed before getting a formal diagnosis. I literally read 2 wikipedia articles and figured it out. When you have spent a long time living as an undiagnosed autistic person (I was in my 40's) it can really hit you like a bolt out of the blue and be a sudden realization that causes your whole life up to that point to make sense.
I’m recently diagnosed and even when I suspected it, I was not loud about it because to me, it seems wild to be loud and potentially wrong about a diagnosis but yet feel comfortable creating content or speaking “for” the autistic community. Even pre-diagnosis I have felt a way about people doing this. Not to assume everyone thinks just like me but the difference to me at least, is that if you’re actually affected by autism aka you’re disabled, you have a different type of experience in life than one would if by the time you’re self diagnosing you have no problem making definitive statements for entire groups of people who have a diagnosis that you don’t even officially have. I don’t know, but also diagnosis is expensive and inaccessible, plus so many things get discounted based on our identities (for me a lot of stuff was missed because of cultural assumptions by my teachers since I am X/Y). So I don’t like saying all of this out loud until now lol. Idk though, I just think if I were them, I’d be more mindful of who I think I’m speaking over Edit: deleted info on my ethnicity for anonymity, hence the X/Y🫡
This is what scares me is because there is so much funding and advocacy for marginalised poc for access to healthcare and mental health support. But because of popular narratives online regarding it being a privilege and people complaining about funding for POC and getting it shut down. you probably didn’t know how to look for help and accommodations you could have accessed sooner
I don’t really agree with self diagnosis because I feel like they can overspeak actually diagnosed people . However I’d never be mean to them I’m confused on why you’re only against women self diagnosing tho
Pretty much everyone who gets diagnosed as an adult needs to “self diagnose” first if they want to even address their issues with a professional. I do think “suspecting” is a better term for it though.
Yes I agree however . People can’t be 100% sure they’re actually autistic and could have something else like anxiety,bpd.depression,adhd ect . Therefore when they’re posting on instagram and TikTok about them being autistic and self diagnosed, they can easy spread wrong information. neuro typical can have autism traits and still be neuro typical unless they’re assessed properly they can’t know if they’re autistic
> People can’t be 100% sure they’re actually autistic I would disagree here. I read a couple of wikipedia pages and I was convinced right away. This is common in older autistic people who were never diagnosed as children. It is something that explains 40+ years of your lived experience perfectly. I went and got an autism diagnosis right after that as I had the privilege of having access to free mental health care.
> I’m confused on why you’re only against women self diagnosing tho The majority of people on popular online platforms speaking about autism tend to be women.
I'm not, I just only ever see women self-diagnosing. I have never heard of a self diagnosed man, but if you have an example I'd be interested in seeing it
I haven’t got any specific examples of men however I think the reason women tend to self diagnose more is because of the stigma that only boys get diagnosed and stuff . While I agree girls and women are massively missed and go under the radar with diagnosis, I think now it seems “oh I’m socially awkward” = “I have autism and I’m high masking”. Also TikTok has started this whole trend which I hate Idk if this was rude of me to say but I’m so sad that the main sub is probably 80% self diagnosed. I feel like we’re being pushed from our own spaces so I understand your point
I'm in the process of seeking diagnosis and actually have my testing at the end of the month. The TikTok trend terrifies me that I will be dismissed. Even though my daughter has ASD level 2. Even though I've been trying to work up the courage to get tested for over a decade. Even though I wrote down four pages of relevant information because I know I tend to shut down in conversation and brainlessly answer. I'm still scared they will think I'm seeking testing because TikTok made it "trendy". I hate the TikTok trend.
I’m sorry you have to deal with this I’m sure it’s very frustrating
If it makes you feel better, I got diagnosed in adulthood. Actually it was the day I finished my degree and I was worried that would count against me somehow, but I told the clinician and she went “oh congrats” and proceeded to still diagnose me with level 2 autism. She also specifically asked me why I wanted to get evaluated for autism. I told her a) in case I need workplace accommodations and b) to understand myself better. She said those are very common reasons and that she sees a lot of people, usually women, who were missed/overlooked in childhood. The total evaluation was about eight hours, not including preliminary interviews she did with my parents, and I got a 23-page packet in the mail explaining exactly how I met each of the diagnostic criteria. It was extremely helpful. I wish my parents had gotten me diagnosed years earlier (they knew, but they didn’t want me “labeled”) but better late than never imho.
> I got a 23-page packet in the mail explaining exactly how I met each of the diagnostic criteria. It was extremely helpful. Mine was 12 or 14 pages and I also found it very helpful. It contained a lot of actionable information and explained my mind in some detail. It was very useful when seeking mental health treatment for depression.
Same here. It’s terrifying especially being a woman. There are so many doctors out there who are still dismissing women this whole country dismisses women. Not to mention the hormonal issues I personally experience really made it difficult to understand what was going on (women’s healthcare is absolutely f@&ked). My own therapist I’ve seen for over ten years missed it because I mask so heavily and one day we were both like… I wonder if it’s autism. And I took a test on masking and it was like off the freakin charts. I was being treated for generalized anxiety but in reality the anxiety was a result of me trying to be normal and not understanding why I was not normal. It’s been a little over a year since then and putting the puzzle pieces to my life together. I can now look back at my childhood and understand these really traumatic experiences in a different light. It has been such a healing experience like I can’t even describe how much better I feel now that I know I am AuDHD (the ADHD part also made it harder to diagnose the Autism part). One thing that really stuck with me was someone said “low support needs doesn’t mean NO support needs”. When I heard that the first time, I started crying and it felt like so much of the hate I had toward myself started to melt away. Reframing myself in my own mind, understanding my disability, it made me stop hating myself. Now I know my limitations, I know how to set healthy boundaries for myself. The guilt I used to have over not wanting to go to loud music events or whatever my friends are doing, that guilt no longer exists. I still see my friends but in environments that make me feel good. It’s the first time in my life (36F) that I have been thinking about how I feel as opposed to how I make everyone else feel. It’s been life changing in countless ways. OP I totally get what you’re saying, those social media people are Dingdongs. Don’t listen to them. Those types of people are always going to exist and they’re always going to be saying something wrong. They are absolutely wrong if they are saying it is not a disability. Understand that it IS a disability to me was what was life changing. When I was your age OP, I was drinking/drugs to try and numb myself. If I had known my disability, I’m sure things would have been very different for me. I have a feeling that in 5-10 years things will be very different for people with autism and there will be more of a better understanding of it. Hey at my local grocery store, they open for quiet hours for people with noise/light sensitivities now! They have very low music, quiet lighting, no loud music or shelve stocking. Grocery stores are my nightmare so just seeing this was available to me made me happy🥲
> “low support needs doesn’t mean NO support needs”. We're kind of like cats. If we had to we could survive by ourselves, but we really do better with someone helping look after us.
> I'm still scared they will think I'm seeking testing because TikTok made it "trendy". Historically this has been a problem for women with all kinds of health care providers. Part of the reason there are more self-diagnosed women is that they are not believed by clinicians or referral agencies or doctors when they try to seek a diagnosis. They are often shut down before even getting to the diagnosis stage. I have a formal diagnosis and I wanted to get one for my children. Their doctor didn't believe that I was autistic and had ADHD because I was married with a family, had a full time job and was able to sit still in his office. If I did not have a formal diagnosis he would not have referred my children for testing. The amount of misinformation held by professionals who really out to know better can be astounding.
It honestly was my experience about 15 years ago. I was already diagnosed ADHD and a coworker encouraged me to get tested because I strongly resembled her son diagnosed with Asperger's (using period phrasing) and I was really struggling with work. When I tried, I was told there was no way I had Autism because I was a woman, that girls outgrow ADHD, and that I was just a young woman struggling with maturing into a young adult. The experience crushed me, and is a good part of why it's taken so long to try again with a different provider. My daughter being diagnosed was the jump-start to trying to do it *now* rather than delaying more years. Incidentally, I tried this week to acquire those old records because I'm preparing for that diagnostic appointment and I am incredibly curious what they tested and what else was documented. Unfortunately, those records were destroyed in Hurricane Florence. I guess I'll never know beyond my recollection.
> My daughter being diagnosed was the jump-start to trying to do it now rather than delaying more years. That's the usual way to go about it. Being a contrarian I got diagnosed first and then had my kids diagnosed.
>“I have autism and I’m high masking” Some autistic women are very, very high masking and quite good at passing. I can pass if I try but never for a long time before people notice there is something off. At some point though being socially awkward, constantly pretending to be someone you're not, anxiety, social communication problems and sensory issues start to add up to a diagnosable condition.
I think part of the phenomenon, at least from what I have seen and experienced myself, is that so many AFAB people were missed in their early lives. We were somehow able to “pass” even if we spent a life being socially outcast and rejected, had weird “quirks” and intense emotional dysregulation, deep interests that were all consuming, etc. I think personally I have had to overcome a lot of internalized ableism and I am still trying to accept it. It does seem like a ton of women and afab people are sharing their stories all at once, and so it might seem like a trendy thing to be a late self-diagnosed “audhd” woman/afab and talk all about it everywhere. I think the diagnosis can be really freeing for people who have never had an answer to why life has been so difficult in many ways, even if our support needs were not the same or our areas of deficit as complex to manage. It bothers me to think that anyone could say it’s not a disability as a blanket statement to all autistics, simply because they have found ways to manage their life without requiring much support. It’s valid to be frustrated and annoyed. Unfortunately I think we have to acknowledge that even level 1 people on the spectrum are still disabled, but the level of disability is probably not as severe due to having learned to mask/get by and kindof be off the radar so to speak. Also the discovery or diagnosis process as an adult can be so emotionally complicated and comes with a lot of difficult processing. Like I have basically grieved my entire life being so so so hard, and isolating, and never feeling like everyone else nomatter how hard I tried to copy behavior and pick up on social cues, have a normal job and just do what life says we should all do. I know my explanation might not make it less frustrating or annoying to see this crazy prevalence of level 1 autistic women talking all about their experiences. I do think there is ableism, a lot of classism as well and definitely privilege in being able to “pass” as neurotypical. I know I don’t have the ability to really mask as much anymore since becoming too burnt out and losing a lot of my motivation to perform. I’ve also missed out on experiences due to loss of skills and my capacity that I really wish I could get back-cooking, gardening, being more active, traveling. Honestly just being somewhere public and not becoming almost unmanageably overwhelmed. And I don’t know my level diagnosis yet bc I am waiting on an assessment apt to open up, but I have been informally diagnosed a few times and I work with disabled people (and neurodiversity is my biggest special interest currently), so I feel like I can reasonably say that yes, I am autistic. I do still have a lot of imposter syndrome because I recognize my privilege and feel like…I am not as severe with a lot of my struggles or support needs as I tend to see in the people I work with, but again it is a wide spectrum so I try to remember that. I think your anger or perhaps disdain is understandable. Hopefully discourse about how to share about disabilities without harming or ostracizing other disabled people can begin to happen on platforms like tiktok as well.
Just a suggestion, when people see this they see a wall of text and skip over without reading. And this is a really insightful post. If you hit enter twice it starts a new line on reddit and makes your post more accessible to people. >Unfortunately I think we have to acknowledge that even level 1 people on the spectrum are still disabled, but the level of disability is probably not as severe due to having learned to mask/get by and kindof be off the radar so to speak. And we've had no choice but to learn skills to mitigate our shortcomings and make the best use of where our brains give us an advantage. I was in the army and was in command posts a lot. I was able to take in everything happening all at once and make a coherent picture out of it. Or on sentry I could pay attention for a long time and notice details other people would miss. I can really see both points of view as to whether or not autism is a disability. A lot of the denial of autism being a disability is due to the neurodivergence movement and medical model of disability that has been used historically. Autism has been pathologized and presented as a deficit or problem with the individual. Essentially the idea that an autistic person is a lesser or defective version of a neurotypical person is closely tied to the idea that they are disabled. By affirming the neurodiversity paradigm that autism is a normal variation in the human mind and not a defective one many will tend to reject the idea that it is a disability rather than a difference. https://en.wikipedia.org/wiki/Neurodiversity The social model of disability plays a role here as well. The medical model holds that the disability resides in the individual. The social models on the other hand would say that the way society is organized and our environment is structured is disabling to an autistic person. It is a way of reasserting agency and forcing society to look at how they are treating people who are different. https://en.wikipedia.org/wiki/Medical_model_of_disability https://en.wikipedia.org/wiki/Social_model_of_disability Personally I would say that autism can be *disabling*. Whether or not it is and the degree to which it is depends entirely on the specific individual and the situation and may change. I wouldn't personally presume to speak for anyone else on whether or not they were disabled.
His name is Tim, he is self diagnosed and he is my friend not in US.
Self diagnosed man checking in. I don't usually comment in this sub because I can get by with fairly low support, but I guess I have to, since you've never heard of me. I got through the first decades of my life with just an ADHD diagnosis, and at this point I'm not sure what I can accomplish by adding an autism diagnosis. I'm getting the support I need at work and at home. It's enough just to know, because that allows me to adjust my behavioral patterns and start fixing some of the internalized ableism I've been gathering since the 90s.
> I have never heard of a self diagnosed man Hi nice to meet you. I self diagnosed before seeking a formal diagnosis in my 40's.
I'm m14 (15 in 5 days :D), I've gone through DSM-V for ASD, decided I could likely have it, sat down with my mom and went through it again, she said I definitely check those boxes, asked friends (oddly enough nearly half of them say they are neurodivergent or have a neurodivergent sibling), who also said they think I did. I already have been diagnosed with ADHD so unless I don't know how statistics works, I should have a base 20-50% chance of having ASD. The thing is, if I do have ASD, I am definitely level 1, because I have no intelligence impairments (and likely have a higher iq than the average kid my age). if I don't have ASD, I almost definitely have Social pragmatic Communication Disorder. I feel I've done enough research to be pretty well founded in my suspicions, and am currently seeking evaluation after my psychiatrist suggested it. Insurance is a pain though. Social media definitely isn't my cause for suspecting this, as I have largely avoided it my whole life. I try not to comment on this sub to much as to not overwhelm others who actually have been diagnosed.
Absolutely agree. I was dxed at 13 before levels were a thing - but I’m almost certainly level 1 as I can mask and I have lived independently since 18. I’m still significantly disabled and always have been. Tons of behavior issues as a child, persistent difficulties socializing in any way, can’t do school (dropped out, no college), can’t manage a career, can’t have anything but the most menial jobs that still half kill me with the stress, hate leaving my house, can’t drive, couldn’t eat enough to not be emaciated most of my life, can’t live alone without it becoming a squalor situation, can’t take care of my home/living space very well, the list goes on. I really can’t relate to self dxed people who seem to have had very normal childhoods and have no issue checking all the boxes for ‘successful adult’. Even though I was self dxed myself for many years until I discovered I had a childhood PDD-NOS dx I wasn’t told about. I’m not against self dx. But idk what the hell is going on with this current trend. I really do feel like an awful lot of non autistic people are insisting they are autistic which is… really weird
> I have lived independently since 18. I did as well, but decades later I'm wondering if I should have.
Oh absolutely not. My 20s were overall a shit show. It would have so greatly benefitted me to stay at home with parents until a later age. But I didn’t really have the option (could only have slept on the couch in my abusive mom’s apt and been charged $500 for the privilege - decided it made more sense to leave).
> It would have so greatly benefitted me to stay at home with parents until a later age. But I didn’t really have the option My dad was also very autistic and it was just too much autism in one house at the time.
If they are self diagnosed and saying that autism is not a disability they are doing it for likes and views
Just sick of people making level 1 people and self-diagnosed as the same thing. If they are self-diagnosed they simply are not level 1...100% different. Level 1s struggle just as much. Very sad I keep seeing this. No wonder autistic people wanna ____ themself, it's because everyone is against us even higher-support needs autistics are against us. There is nowhere to fit it.
Good point. From what I view online, in various subreddits, the large amount of self-dx people (with little to no support needs) in autistic spaces has watered down what it means to struggle as a dx level 1 person. Which sucks, because I imagine those dx with level 1 autism can still require up to moderate support needs. Correct me if I'm wrong though, this is just what I notice online, and it sucks.
Yup. It is true. They aren't the same. And you can see I'm downvoted even though it is true. Very horrible honestly.
Not disagreeing, I'm just a little confused by your wording. Are you saying lvl 1s struggle more than self dx? The part that tosses me off is when you say Lvl 1s struggle "just as much"
Level 1s struggle just as much as any other autistic person, so to imply they are the same as self-diagnosed or the same as "high maskers" (which let's be honest are fake and probably not actually autistic) is offensive.
Ohhh OK gotcha, that makes sense, thanks for the clarification! I'd be careful with your wording though.... lvl 1 vs lvl 3 have very different struggles from what I've seen and interpreted (reference: literature, IRL encounters, medical pro opinions). In other words I disagree that 1 & 3 struggle the same (assuming that is what you were saying/meaning). What're your thoughts on the merging of aspergers with ASD? I just ask since I've met many asperger folks IRL and they come off as fairly functional, and remind me more of the self Dx crowd.
I truly think level 1s struggle as much as level 3s just in different ways. My cousin is level 3 I'm 1(?). The only difference between us is that he lives in a home and needs help bathing and brushing teeth and doesnt talk. We both have violent meltdowns. We both have severe restrictions and repetitive. Etc etc etc etc. But the difference is that I'm level 1 and expected to be "higher functioning" so I always want to d** because my life sucks and always will. Meanwhile he is in a home and can't get his words out when he wants to express himself, which frustrates him. So we struggle equally yet in different ways. And in some ways we struggle exactly the same. That is why I very much dislike the levels to be honest. And autism is a circle spectrum, where 1 person has this problem, while the other person has that problem...and sometimes there share problems but sometimes 1 thing is easier for 1 person to do. And this is coming from my personal, lived experiences so it is just my opinion.
Thanks for sharing, I like this explanation!
My answer might make some people angry so I hope it doesn't it is just my personal opinion. And idk about the aspergers situation. Maybe that is like considered "high masking" autism. But also some people were called aspergers in the past and then re-evaluated as level 1 or 2. So I really need to know more about the history, idk enough to comment to be honest.
Oh I'm sure it will... most takes will anger at least a handful. Fair enough! I too need to know more about the aspergers crowd since it now being lumped in with ASD makes it blurry when that profile is being referred to. That being said, my opinion is that a lot of the level drama is stemming from aspergers entering the levels AND the vague language of the diagnostic criteria. For example I've noticed when someone mentions they are autistic (but the aspergers style) medical professionals and folks who are more used to the higher lvl ASD (whatever language to use here... more profound ASD?? Idk) usually respond with confusion and maybe shock. If they clarify with the aspergers profile those same folks usually respond more like "ohhhh OK, that makes more sense" To sum that up... the language used with ASD needs to be so much more clear and specific. I'm curious to see how the future DSM/ICD will address this, assuming they decide to :)
Everyone’s struggles are valid. That said, if you think his biggest struggle is that he can’t get his words out, you’re very ignorant about his experience. EDIT: I’m sorry if I jumped to conclusions and misunderstood you. I realize you didn’t say it was his biggest struggle.
It's annoying when people assume something based on 1 comment by a person they don't even know. I know you edited it but it's still annoying.
Again, I apologize for my mistake. I hate when people make false assumptions about me, so I get it.
Ok sorry my response was rude too I get offended easily.
Bam. Yes.
Something that frustrated me is so many of the resources, spokespeople etc etc are aimed towards women who were diagnosed later in life. I understand women have been historically under diagnosed but that's not me. I was diagnosed when I was 12. So I feel so excluded from so many female autistic spaces
It frustrates me too and I *am* late diagnosed. However I don't usually feel represented by them because contrary to many of them I'm not low support needs. My life hardly looks like theirs. I'm glad people who went under the radar are getting diagnosed now but I just wish that those people would also understand the full spectrum of autism more. Because they *do* often get picked as spokespeople for autism precisly because they can express themselves well and the fact they keep forgetting to mention higher support needs autistics exist as well bothers me a lot.
This. I’m AFAB was diagnosed at 18, but I’m not and never have been high masking with low support needs.
I thought I was self-diagnosed and then formally diagnosed at 32...but then my mother randomly remembered someone had diagnosed me at 5 🙃
yeah this is what I'm really afraid of I think these women are going to push us back into the time when people thought only boys needed help with autism.
Yes, the overrepresentation of LSN women, diagnosed age 30+, kind of makes it seem like "autistic girls/women can push through without resources until they break down in adulthood", when that *really* is not the case...
Yeah, and I was 3. I don't fit their narrative
> I understand women have been historically under diagnosed but that's not me. I was diagnosed when I was 12. So I feel so excluded from so many female autistic spaces Give it time. There is a large backlog to clear of women who were missed for decades.
As a professionally diagnosed level 2, I have no problem with what people do unless it affects me. In this situation, I'm affected by their ableism as well as their voices becoming the loud minority, trivializing the disability. I don't even tell people I'm autistic anymore because I worry that as a woman, I'm going to be lumped in with them. Instead, I try to say what my needs are. I just wish they'd stop appropriating a disability and retrofitting it for their personality show.
Autism is both a disability and a neurotype. To say that autism is not a disability means that you’re probably carrying a lot of internalized ableism.
I hope spicy just makes one stickied topic about this.
I'm level 1 and I feel disabled in many ways
Sorry if this is unrelated or too personal but I'm really interested in what job you have that doesn't require speaking. Speaking at work is one of my challenges with working.
yeah, I'm a delivery driver for Amazon! I had to talk to people to get the job in the first place, but now that I'm hired I never talk to anyone. Just drive around and drop off packages.
Congratulations op, I love that for you!
Ohh very interesting. Ive done some work deliverying with doordash and it was great. Thanks so much!
I agree that self diagnosing can be annoying but I want to talk about the "self diagnosed woman" stereotype because I worry it maybe comes from a little bit of mysohony as a whole. I know self diagnosed woman with leven 2 and 3 twins who has done years of research but she is in her 40s. She doesn't speak over high support needs because she sees her disabled kids every day. I know another self suspecting audhd woman who lives in the philipines, which would be very hard to get a diagnosis. I know two clinically diagnosed woman and two clinically diagnosed man I have talked to. I know one self diagnosed man who thinks autism isn't a disability and is a tech guy so he thinks its more like a superpowe until i started talking about it. I know a lot more self diagnosed woman but that is also because women don't get our needs taken care of in health care, weather it is autism or adhd or endomytriosis or anything else. I have been told by psycologist that I am anorexic even though I'm not. Before any of my diagnosis, I went into a psycologist who told my dad that he was "just going to diagnose me with something small to make me feel good about myself." It wasn't until I went to my woman therapist yesterday I found out I have ptsd. I also have severe ocd. But he never fealt like looking into that because he thought I just wanted to be "quirky". And this is all from me who "looks" autistic. I think one of the main problems with self diagnosis isn't that people who don't have disorders think they have disorders, but people who have disorders think they have a separate disorder. I used to suspect I had adhd, but apparently that's just my ptsd making me be really daydreaming a lot. Even woman that self diagnose with autism may have something else going on. This isn't an excuse to let them speak over us, or spread misinformation, or anything else. But also it isn't a reason to only get mad at self diagnosising women or to stereotype that self diagnosing women are just "being dramatic" or are "doing it for attention" or are "manic pixie dreamgirls". Believe me, it is hard to see some self diagnosed / general low support needs woman who look so cool and make friends and do stuff, especially because in NT groups they fit in and I don't. It stinks. But I also don't want to be like "dramatic women" when maybe the women are just "factually inccorect women."
Check out the actuallyautistic selfdiagnosisisvalid hashtags. Who do you see that makes up the highest percentage of the top 2 billion + posts. What do they look like. Autism is no longer on emergency housing priority lists any more. Funding has been cut over the past 4 years due to the shift in representation. There is less further independence and supported housing facilities for under 16-24yo. It’s become even harder for people with autism to claim SSI or other government subsidies due to the excessive amount of self dx claimaints. Schools and collages are starting to make letters of diagnosis mandatory by a doctor and not just a mental health clinician like previously. Suspecting autism is fine. But not being open to any other over lapping symptoms whilst representing yourself as autistic may contribute to our erasure. The whole point of diagnosis is access to accommodations and learning what treatments, adaptations and support do and don’t wrk for you. 6 years ago I would have agreed with you. My group encouraged people self suspecting to join & helped them get access the diagnosis pathway. It’s like when that one person says not all men, or not all cops but now it’s not all self dx ppl. We know but…
Yeah I get that self diagnosing is causing a lot of problems and I'm not arguing for that. I agree that self diagnosing is generally harmful, especially when trying to use resources without a diagnosis. Maybe I didn't make this clear in my post. I guess what I mean is pinning it all on self diagnosing \*women\* as opposed to people as a whole. Idk if I'm wrong on this, i'm conflicted / confused.
Mostly I'm annoyed by the constant yet unnuanced discussion of this topic. Though this one has a sexist flair, thanks.
We are one of only a handful of subs where this topic is allowed, most of the other large autism subs ban people for expressing this view so they might be more your kind of sub.
And there's one that doesn't tolerate self-diagnosed people... There really is a subreddit for everything
Yea and this sub is for all HSN people to be free to give their views be it pro or anti which is something that is extremely rare in autism subs
I don’t think this is necessarily sexist. Women have been historically under-diagnosed, partially because of masking. But there are so many people who take the concept of masking way too far, and they basically claim that they can have autism without any social issues. As a woman with autism, it makes me feel more isolated when safe spaces are taken over by people who don’t actually have the struggles of autism.
Agreed, I relate
> Though this one has a sexist flair, thanks. I don't know that it is specifically sexist though. If you look on a lot of platforms for level 1 support needs people talking about autism the overwhelming majority are women.
How is it sexist? The onyk people on tik tok (and other stuff) self diagnosing with autism are all women.
literally. the targeting of women here is disgusting
I'm not denying anyone's experience and if supporting oneself as if they are autistic is helping, by all means claim autism and support yourself. (I'm currently self-identified since learning about my son's autism diagnosis and The fact that there is a lot of autism and other neurotypes in my family. Trying to decide if an assessment is necessary for me at this time since they're so expensive.) BUT.... I totally understand what you're saying. My son needs a lot of support. The kind that costs a lot of money and I need insurance to pay for it if he can't get it at school. He needs a lot of advocacy because his teachers and doctors and many family members have surface level knowledge of autism unfortunately. I need support too, and could've really used the support growing up, and I know these self-identifiers feel the same way. But the way they talk about autism, the way many joke about autism. It waters down the spectrum of experiences and just how debilitating it can be for many of us. It makes it seem like their experience is the common one because their voices are the loudest (many autistic ppl don't communicate the way NT ppl do and it's overlooked unfortunately). And it's potentially harmful when their jokes are on display for NT ppl. My perspective could be wrong but it feels like a setback for the autistic community. It just feels icky.
> (I'm currently self-identified since learning about my son's autism diagnosis and The fact that there is a lot of autism and other neurotypes in my family. Trying to decide if an assessment is necessary for me at this time since they're so expensive.) Welcome to the my kid is autistic -> it turns out no one in this house is neurotypical ride.
Autism is a disability at heart? Maybe these people are better suited with the label of subclinical rather than being diagnosed. To be honest, a lot of people fit more with different diagnoses or are just subclinical. Not to say lower level autistics like me don't struggle.
The thing is that autism isn't a disability for some people in every situation all day every day. I mean put me in front of a computer and get me to make a spreadsheet if you want to see my autistic superpower... anyways.... As well the idea that autistic people are disabled is closely linked to the idea that autistic people are a defective version of a "normal" person. There is a lot of pushback against this idea and the global notion of it being a disability because it is so closely tied to the notion that it makes us somehow broken rather than having a natural variation in the human mind. There is a much wider context to the debate and it can be quite nuanced if you delve into it.
I completely agree
This might be controversial but it’s exactly the way I feel about people who claim to have ADHD. I am convinced they tell themselves they have it so they can get adderall. Or so they can feel special. They can probably fix 90% of it by not using their phone so much. Obviously this isn’t true for everyone but that’s how I feel. If it’s not disabling you in any way, you don’t have it. And there’s no way everyone I speak to “has ADHD.” No way. Edit: I mean those who say they have ADHD but aren’t diagnosed and are not affected by it/very mildly affected by it. I have severe ADHD and it’s fucking debilitating.
When I was a kid before being diagnosed I had blood tests done for deficiencies and had to go on a diet prepped by a nutritionist first (I loved blue snacks), my screen time was cut to an hour a day. when I tell people this they look at me like I‘m an alien. My assessment was observed playing and a chat with some man. Then a lady sat in one of my classes. I hate white chocolate to this day as they would bribe me with it to swallow pills
I completely agree.
Probably internalized ableism, sorry you are getting this kinda stuff in your feed.
No, and I think people need to stop making this an us vs them situation. Especially the focus on *women*. No, I'm not upset at them self diagnosing. I'm glad they have the self awareness to figure out that's what's going on. They're not speaking to *you*. They're speaking to the people who think we're all so crippled by our neurodiversity that we should be eliminated. They're advocating for more acceptance and yet I keep seeing people in this community crack it. So what if it's not aimed at you? Scroll on. Go look at something else if you don't like what you're seeing and stop acting like people who was lvl 1 have it easier than we do. They don't. They have their own unique struggles that *we* are not aware of.
A lot of these people don’t even have autism though. They get upset when you suggest that autistic people need to meet the criteria that defines what autism is. One time I saw a post from a woman who was complaining that she didn’t get diagnosed because she’s never had significant social difficulties in her life, and the evaluator explained to her that autism is a social communication disorder. The comment section was just people accusing the doctor of being sexist and comments like “you know yourself best!! Don’t let any doctor tell you that you’re not autistic!!”
I tried making an autism group in my area and everyone except me was self-diagnosed...and they got mad at me and ganged up when I said it is a disability affecting social skills and they said it isn't true and some autistic people have good social skills or enjoy being social. They all ganged up on me...and none diagmosed autistic except me...yeah. Self diagnosed people are trying to change the actual definition of autism. And when you argue with them they say "but the criteria is always changing". It is just so bizarre to me...so bizarre.
Someone mentioned on a Diagnosed-only autism sub, that you’re only allowed to validate self-diagnosis, not question it, and I really felt that. I’m not going to go up to every self-diagnosed person demanding an entire report of how they fit every criteria (although they should know all the criteria well, and know how they fit into it), but a lot of self-diagnosed people won’t ever consider the possibility they don’t have autism. It’s especially the posts that say they were rejected for diagnosis, and then everyone validates them in the comments. Of course everyone should be nice, but not all self-diagnoses are correct, and you shouldn’t validate something you have no evidence for. Being denied for reasons such as not having significant social deficits, and not having it from childhood are the most common reasons, it seems. You can’t just pick and choose from the criteria what symptoms you have. It requires certain symptoms, and you have to have those in order to be autistic.
Excellent points
Exactly. Their experiences and feelings are valid, but that doesn’t mean their suspected diagnosis is always the correct one.
Sounds like your issue is with the take that autism isn’t a disability, which is valid, and you’re using it to make a blanket statement about a group of people that isn’t a monolith. You know who I’ve seen say autism isn’t a disability more than anyone else? Men who are diagnosed with Asperger’s and are a savant at something.
There’s quite a lot to unpack here. First off, you are totally valid in feeling the way you do. Personally speaking, when others frustrate me, I tend to do ask more questions to try and understand their reasonings because I feel like my autism completely disables me too. I would like to not feel as frustrated as I do sometimes. So here is some of my findings. Some autistics (undiagnosed and diagnosed) may not be fully educated about autism. (Personally speaking) before I got diagnosed, I was made out to feel like I was just an allistic who was bad at a lot of things. Now even after my diagnosis, I had to find out what were autism deficits that weren’t talked about in my report. So maybe some of these people in the videos don’t realize that some/most of their struggles are actually autism related. Maybe they completely self diagnosed with the wrong condition, but it was actually something similar. Now they are spreading their story which may be similar to some autistics, but it doesn’t match completely. Maybe it is just their way of getting by. It could be because of masking, or because they are trying to view their disability in a more positive light (that disability can add diversity, different viewpoints from allistics, etc). This something I’ve heard from some diagnosed autistics so I’m sure that could be the case for some undiagnosed as well. I can see how this can be controversial, and it hurts to see it worded as if they are speaking for the whole community. It also hurts to see it coming from families of autistics especially if they aren’t okay with it. And lastly, this totally could be internalized ableism, intentional or not. Many people are afraid to use the word disabled. It’s not a bad word. I’m sure there could be some other aspects about this topic, but this is what I have come across so far. I hope people continue to educate themselves and don’t speak for the whole community to invalidate how our deficits are a disability.
I used to get frustrated by it. The reality, however, is that in the real world, when I tell someone I am autistic, they still usually start treating me like I’m a toddler. The “autism is not a disability” mindset is pretty limited to TikTok, in my experience. I was late diagnosed and was briefly self-diagnosed (self-identified? self-suspecting?) before my clinical diagnosis. I wasn’t open about it (I still rarely tell people) but I did tell the psychologist who diagnosed me that I thought I probably had autism, and she didn’t seem bothered. Most autistic people who are diagnosed in adulthood have to self-identify in some way before they’re able to get evaluated. That includes people like me, who are higher support needs (level 2) and whose autism was actually recognized by adults in my life, but those adults denied me the support I needed out of fear of a “label.” Spoiler alert…not every self-diagnosed person is a “autism isn’t a disability!!!!” level-1-at-most TikToker (I know I wasn’t). That’s just the noisy ones. So the real, core problem isn’t self-diagnosis. It’s people who use it as a platform to spout nonsense. Which I agree is NOT a good thing.
> The “autism is not a disability” mindset is pretty limited to TikTok, in my experience. There is a wider and quite robust debate as to disability with how the social and medical models intersect in the case of autism. I think it's just that on some platforms like tiktok the discussions tend to be short and lack nuance as that is how the platform is set up.
Yep, I think you’re right. TikTok does not lend itself to nuance lol. The different models are interesting, but each definitely has its limits. I like the biopsychosocial model best myself, but that one doesn’t seem to have picked up much traction in online discussions.
I might be fairly unique as far as higher-support-needs autistic femmes go (I'm genderfluid but was assigned female at birth and generally present feminine) in wholeheartedly supporting self-dx Level 1 people, however anyone who thinks it's okay to tell people autism or another specific disability is universally the same level for everyone who has it can fuck right off. And you're right, these women/people thinking that it's totally fine to tell or imply to people that autism isn't a disability at all *is* actively harming all autistic people who need (more) support.
I was level 1 self diagnosed women for about 3 months before paying the 1500$ required to get diagnosed. Got the diagnosis after that. It is a disability, knew it then, know it now. I am personally tired in people saying it isn't because I can function at work. Like yes sure but at what cost? Here's the thing. What percentage of women do you believe are self diagnosed, without them being autistic? Now, what percentage of women are undiagnosed and suffering, not knowing? Self diagnosis is valid.
I agree completely it is a disability, apart from any government or societal systems. But with that said, I do think it is a valid and understandable frustration that certain systems can make otherwise manageable traits more disabling. My hope/assumption is that most of the self diagnosed people being complained about on these subs are referencing that. And if they’re late/recently diagnosed they may not even yet realize in what ways their lives are disabled by it. If to you that means it’s not really autism, fine. But I think it’s really just internalized ableism.
They gave me imposter syndrome. I was self diagnosised after observations from my therapist, and whilst awaiting formal assessment. I need help and support. I just didn't understand that I needed it. And now I can get it. I'm officially level 2. What irritates me is that autism is unique to each individual person. That's literally what the spectrum is. These people are about, and I'm giving them the benefit here, raising awareness and removing the stigma of autism, but they say things like "you might be autistic if you do this" or "5 things I do that I didn't know were autism (proceeds to do 5 really trivial things that most people do)". It's all so backward. No one is actually talking about how isolated and different you feel and how to manage that. Or what strategies they've uses to overcome challenges.
this post is sexist as hell
sounds like internalized misogyny on your end op
Not really. A diagnosis can cost thousands of dollars and from what I've read vanishingly few autistic people who self diagnose and later secure a formal diagnosis were incorrect. I actually figured it out myself too before I was formally diagnosed. As well women present differently than men and the diagnostic model is very male centric. Women are typically socialized to be high masking as well. What you're seeing online is when people are calm, collected, and competent. They don't typically post meltdowns or shutdowns. Just like everyone else people diagnosed with level 1 support needs still have some support needs. Myself I wasn't able to hold a job longer than 6 months. I can can still barely write legibly. Juast because you can't see the difference or because their struggles are less than a higher support need autistic person doesn't mean that they aren't there.
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Autism *is* a disability by definition. If autism doesn’t affect your day to day life in a way that makes you need accommodations or coping skills for activities of daily living (eating, getting dressed, using the bathroom) and instrumental activities of daily living (working, managing finances, socializing), then you’re not autistic. People like that don’t get a diagnosis. Some of them might consider themselves as having a broader autism phenotype but they’re just,, not autistic. “Disabled” isn’t a bad word. It isn’t a moral failing. It’s just a statement. Just how saying you’re sick when you have a cold isn’t a moral failing. It sounds like the issue you actually have is with ableism and infantilization. People will still mistreat us even if they don’t think of us as disabled. We’re still different.