the unspoken struggle of not looking autistic enough

High functioning is a label used to deny needs. Low functioning is used to deny the agency of a person. That's what I see.

I am good looking tall, well spoken autistic man. I get leadership roles asigned to me and I can keep it up for 1 or 2 months. That is when I am stupid enough to accept that role. When I am at home I crash. I can shower and eat and I lie on the couch. No organising. No cleaning. Nothing. The amount of hours I can function reduces every day until I am completely passive. I can function. I can even function well above average. For a while. Long enough to be perceived as able. Not long enough to be functioning in society. But it is burning me up. Now I am on disability. Though I can be normal passing. Masking is eating me alive if I do it too much. And I have been masking my whole life among family. I rather be my weird self and get odd looks from people.

I was legit DENIED an autistic assessment a couple months ago because "But I'm looking at you and you don't LOOK autistic". Like, I paid for a couple appointments specifically to get an ASD assessment and, in both appointments, he REFUSED to do the evaluation, which means I ended up paying a small fortune for a service that wasn't even provided. Now I'm seeing a different therapist and I don't know how long it'll take for me to get diagnosed (or if he'll even officially give me the diagnosis) but, after just one appointment, he told me he could see CLEAR SIGNS of both ADHD and ASD in my and I was so taken by surprise that I almost teared up because I'm used to being scoffed at and mocked, but I'm not used to getting that level of validation. But I'm trying not to get my hopes up because I'm low-key traumatized by previous therapists I've had so I'm still really on the defensive about this trusting this guy because I keep waiting for the shoe to drop with him as well.

I am a woman. When I don’t want to mask, I purposefully dress sloppily, wear ugly glasses, and leave my hair untouched, and then people leave me alone. Honestly I feel more like myself when I’m “ugly” and people ignore me.

I was diagnosed with cancer when I was a teenager. At one point, I went into a coma for two weeks as a result of my treatment. I came out of it, and I had to learn to walk again because my muscles had atrophied. It took a long time for my body to recover. There was a long period of time where I could walk short distances and appear "normal," but my limit was so small, and it didn't take much for me too exert myself beyond my body's limit. I was told over and over again by people who looked at me and saw me walking like a "normal person" in disabled spaces that I wasn't allowed to be there. Even when I explained myself, I was told, "Well you can walk, and this is for people who are disabled." I don't tell people I'm autistic now, at 26 years old, for the same reason I stopped using disabled spaces when I was a teenager.

did anybody notice that most of the gatekeepers of autism are not even autistic? i am in a large group of autistics who support each other, congratulate and celebrate those who’ve finally got their diagnosis.😢😢😢

"I don't like this idea that people look at people like me and assume that life is a lot easier for us, therefore we shouldn't be considered autistic. There is a specific type of struggle and suffering for people like me, who don't look autistic and who can seem like we have our shit together, when behind closed doors it's really fucking hard to make it seem like that." This part hit me like a brick in the face. Thank you for all the wonderful content, I've been binging your videos over the past few days.

When I first learned about autism, it was because I worked for an amusement park and my employer was having an autism day especially for autistic children. They described what the autistic kids were experiencing and I got so mad because the community and the parents were helping those kids whenever I felt the same way and nobody helped me. I was like THAT’s what autism is? I felt like those kids should have to get over it and learn to act right, just like I had to. I didn’t know I was autistic until 25 years later. All those years I stayed mad at autistic people and then I learned that I am one. So yes, I totally get it why those moms get mad. Cuz I was mad too, but for different reasons. Those moms are mad cuz they’re doing the work to make their kids exist in society. I’m mad cuz I had to do that work all by myself.

I love been high functioning, especially when people keep saying I can do something because I'm smart even if I'm crying in front of them asking for help because I can't take it anymore 🤩🤩🤩

I feel this so much. I was officially diagnosed as AuDHD at 35 after struggling my entire life, and my husband’s response was “Well, we’re all a little autistic”. I never felt so invalidated in my whole life 😢

I SO feel your frustrations! I am so over being invalidated with chronic ableism. I am always stunned and shocked that fam and friends still feel the need to question and criticise everything I say and do in order to “help” me. It is invalidating, isolating, soul destroying and reaffirms all those negative thoughts I’ve had about myself before my diagnosis. I just wish that if people don’t understand, instead of attacking and accusing with their prejudices, they would just engage with a conversation …

“if that part of me was actually encouraged or allowed… I wouldn’t seem ‘non-austistic’” THIS 🙌🏼 can you imagine if we were actually just allowed to be ourselves and not get scrutinised or bullied to mask and be someone we’re not in order to fit into society, can you imagine just how much happier and free and not feel like a burden we would feel? Like I really hope one day we are able to get to a world where autistic people can just live as themselves and not be constantly under pressure to be ‘normal’ enough or having to constantly hide who we are

As someone who is suspecting to be autistic but is scared to say it because i think im not 'autistic enough', this really hit hard. (in a good way)

There is always someone worse off than you, this does not mean you do not struggle ❤

I’m "high functioning" and recently got diagnosed with autism and adhd (add). My mom has been questioning and getting annoyed over me getting "more autistic" since my diagnosis..Like mom I’m just trying to breathe and not mask all the time, stop yelling at me for stimming when you know I’m autistic!

You're so well-spoken and have a way of putting into words these thoughts that have always haunted me. I can't fit in with average people, if I act 'authentic' I'm heavily criticized, if I'm struggling with burnout from masking I'm told "just be yourself and relax", I can't hold a job, my executive dysfunction/ADHD makes me a shitty housewife some of the time. It's exhausting being so disappointed in myself all the time and wishing I could just fit in and stay under the radar. My entire life I've been told to stop overthinking/fixating but it's so automatic to me that it feels like breathing, and it hurts to know that my natural brain is so annoying and frustrating to others. I'm so sick of receiving harmful or nonsensical advice from allistic people, as if I'm simply too stupid to think to try very basic things, when in reality I've tried nearly everything to 'fix' myself. The conclusion is always the same: I can come off as mostly normal for chunks of time until I hit rock bottom burnout and get very ill (chronic pain, migraines, severe depression, like a low-grade catatonia) for 3-8 months, or I can avoid dealing with the regular world as much as possible and be content with my husband, cats, projects, tasks, and interests. Of course one of those makes me look 'crazy' and the other makes me 'lazy'. Something you said impacted me so much that I wrote it down: "Sometimes you don't know what should be, but you do know what can no longer be." I think a lot of the issue lies in the concept of intellectual disability. Family members and caretakers that spend time with an autistic person with ID tend to get very angry when autistics without ID get more 'attention'. I do comprehend their frustration, but they often display no empathy for our situations and show poor understanding of ASD as a spectrum. My personal belief is that psychology has simplified neurotypes far too much and that realistically ASD has many manifestations. It's likely too difficult for allistic professionals to work through these distinctions to categorize them further, but I do think it's important to (for the purposes of better understanding autistic people) separate by phenotypes when doing research. There is also the issue of all the undiagnosed: the high maskers, women, those with comorbid ADHD/ASD that camouflage each other, PoC, all the people diagnosed with "it's just trauma", etc. I do think resources need to be allocated properly to ensure all types of autistics are being supported, properly researched, etc. That said it's inappropriate for anyone to lash out at people that aren't precisely in the same spot on the spectrum as them/their loved ones.

I hate that people think those of us who are high masking do not require supports or that we got our diagnoses out of a cereal box or self diagnosed because we think it is trendy. I can attest to the fact that my “flying under the radar” and remaining undiagnosed until I was 50 has taken a profound toll on me: physically, emotionally, and in my relationships. I am a frigging mess. Knowing I am autistic is awesome because now I know why everything allistic people do so easily or instinctively takes immense effort, practice, or study for me, but it doesn’t make doing all that stuff any easier. We would never complain about someone being diagnosed with a broken left arm on the basis that they are right handed so why do people do this to us? I have so many thoughts and feelings about this and one of them is that I stand with you…I agree.

I think the autistic community treats everyone so equally. However, parents and other people who doesn't have autism but take care of us feel frustrated because they are exhausted. I'm so sorry for everyone

I am undiagnosed but suspected autistic, and I feel like it’s impossible to talk to family about this. When I have brought it up in the past my dad will say “there’s no way you’re autistic” because he’s worked with autistic people at his work and I don’t “act” like them. What I hate is that my parents will say they saw no signs of autism in me growing up but when I ask they can’t give me accurate time frames for my growth milestones and any specific behaviors I had as a child. On top of that I grew up masking so much that I would feel completely drained and miserable after being out in public around people. I am a high-masking woman comorbid with ADHD so all of that together makes my autism “invisible”. The part you spoke about wanting family to see that autistic side when you need them to I really resonated with. So often my family doesn’t understand what’s going on with me or why I’m crying or why I’m not speaking because they don’t take into account that I have told them before I think I’m autistic. They just don’t believe it because they didn’t see it growing up. But if most people in the house are neurodivergent I think it makes it even harder to see.

This is a great subject. I am self diagnosed, I believe it is because I'm not very apparently autistic(as a kid it was more obvious, but my parents decided not to get me tested). I can mask very well and can put up very well with my emotions and internal struggles to appear normal. I'm a people pleaser because I'm so insecure about if people will like me or not so I constantly put up with stressful situations. I still struggle in social environments and am a bit odd. The thing is people have no idea what is going on in my mind and what happens when I get home and am alone. I've been struggling with depression for years yet nobody knows because I mask so well. I even mask panic attacks so well that people don't notice. When I get home sometimes I am a wreck. Outwardly I'm just a little odd but there is a struggle behind closed doors and I do need support especially now. Years of trying to live as a ND undiagnosed autistic young adult in a NT world has wreaked havoc on my mental health. I'm not any less autistic than non verbals, it's not my fault that we are all put in one group under ASD. The DSM 5 sucks, end of case. Autism spectrum disorder was literally invented to make diagnosis of similar disorders to autism easier to diagnose as just ASD.