High Functioning Autism (Why YOU Feel Guilty)

I totally get this. I was diagnosed in grade school but was never told it. I self-discovered at 54. And found out from my parents that the school diagnosed me but never took the steps to get the paperwork. They dealt with my learning disability but ignored the autism. But when I try and talk about it I feel guilty because I don't have that documentation and don't have access to medical insurance to pursue it. And Struggling with if I should since I am 54 and have found a way to function in the world around my learning disability And ADD

I was diagnosed with autism, I dont have friends, ive been single most of my life, I struggle with work, I struggle socially and even though I have a genetic condition the causes autism I dont think I have autism I think I have avoidant personality disorder but it is easier for mental health services to say you have autism than to give proper diagnosis and therapy.

Agreed 😊😊😊

Hey I’m totally new here so hello to you and hello to your community. I’m 28 years old /w ADHD diagnosed since I was 8 and undiagnosed high functioning autism, currently on a massive waiting list for my ASD diagnosis but I just feel so damn misunderstood my whole life.. like I’ve had to adapt to be able to function at levels I really struggle with and since it’s undiagnosed, when I do finally feel comfortable opening up and letting someone know I’m autistic, I feel like it’s just not heard if that makes sense? And when in conflict and I say that I’m autistic I get told I can’t use it as an excuse or? Like I feel trapped into a life of a neurotypical and it’s super super depressing. I just need some help and guidance from the right place but it feels like that place doesn’t exist for me right now and I’m struggling to find it… what do I even do… my friend who was probably the only one who could possibly understand (as she had diagnosed asd) killed herself two weeks ago and all I have left is the memories of the conversations we had that really made me feel like we finally found someone who understands our Autism/ADHD..

Yuuuup.
I began suspecting in Nov/Dec, but have recently begun wholeheartedly believing and owning it — and yet, I feel ridiculous at times when I compare myself to certain family members, or those with ‘higher needs’. Like, who am I to claim to be this debilitating thing?? But it IS debilitating for me as well — just not as strongly or in the same ways. That doesn’t mean I’m better, worse, anything compared to them. *We* are amazing in so many ways, *we* are on the ✨spectrum✨, *we* need understanding and compassion …. and to have grace with ourselves.
(((((((((((((((hugs))))))))))))))))

I'm fine with ASD being an umbrella term, but it only makes sense to have different labels for different types/levels of autism. Labels exist so that we can communicate large concepts in only a few words. Without a distinction, it just confuses people and muddies the water, which is why some people now think we're lying because we don't fit the concept that's always been associated with the word autism. It's like if doctors got rid of the names for every lung condition like asthma, lung cancer and pneumonia, and just called everything "the lung spectrum". How would that be helpful?

Yea I mean my family will trigger me to have meltdowns everyday causing my to get extremely ill and lose jobs get behind on my bills on purpose because its like they think autism is made up. Im not sure what the solution is but i feel extremely guilty as well. At the moment im about to lose everything because i have no support.

If I didn't have my crazy bipolar wife I'd probably have shot myself already. Never had this problem in the military. I was able to blend in and actually had friends.

I apologize this is a long one 🙏🏻💕

I'm 25 and am diagnosed as level 1 autism but I personally think I fit level 2 because of the struggles I deal with on a daily basis but because I'm not good at communicating that or showing it, I get labelled as able to function. I can't get a job, I struggle to understand things, I have to have my routines, I can't deal with change, my sensory processing disorder is really bad, I burn out very easily, I struggle with a lot of learning stuff like math, writing, spelling and reading etc and I also need help with going to places so I don't get lost, need support in socialising etc etc. It's hard because I don't wanna be seen for my struggles but I also want people to see them because I want people to see I'm not this high standard they hold me to. I also have a lot of chronic illness on top of that and again, because I'm so good at "managing" it all and struggle to ask for help when I need it, I get told "you're not as bad as other people who have your problems so you should go get a job". The thing is, they don't see me at my worst because I hide away and withdraw from the world. Like right now I am in a lot of pain, feel socially burnt out, I look pale as ever and I feel faint due to low blood pressure issues. They don't see me like that. They only see me on my better days and if they do see me at my worst they assume I have an issue with them or they act all shocked about it. It's honestly exhausting and I do feel guilty about it all tbh. Idk how to explain it though. It's like I need the support but feel like I'm taking it away from someone else who needs it more than me because I've been told what I deal with isn't "that bad".

🫂 yes!

no one ever believes that I am

I feel like this 100% and believe there should be different labels.

I have a history of working at camp with autism that were completely dependent. My daughter has always been much more interactive and more able to function in school.That is how the categories make sense to me
But then, I am also "high functioning" on a different genetic syndrome and I hate labels too.

Hi, the thing is a lot of autistic people also have learning disabilities, around 40%. So a lot of autistic people that need high support also have learning disabilities or other additional needs, like the 2 children you saw in the park perhaps, you never know what other conditions a person hap. For example, I'm autistic, I'm also completely blind, have complex anxiety etc. So I have high support needs, I can't be on my own for any length of time, I can't go out by myself, need full time 1 to 1 support at school,can't cook for myself etc. If I was just autistic, or just blind, or just had anxiety, my needs would be different. But I have multiple conditions which means I need more support.

I’m still relatively new to my diagnosis, but dove in to find out everything I can.
There is a spectrum, but I don’t like the high/low functioning. I was born autistic and I’ll die autistic, how well I’m functioning at any one time depends on what else I’m dealing with and what kind of support I have. It wasn’t until I lived alone/Covid hit/friends turned away, that’s when I struggled to function and autism traits were more obvious.

I hate tryin to explain my feelings

I have twin boys with autism who are 5 years old.... One has severe autism and the other has high functioning autism... I definitely understand where you are coming from.... I definitely was more worried about one twin vs the others because he was more severe... My other baby is now getting the help that he needs and I never even noticed that he was autistic because he could walk and talk and speak.

Thank you for uploading! It's frustrating when we have to explain ourselves and still get dismissed.

I think being "high functioning" can make your diagnosis (whether self- or formal-) feel a bit like "stolen valor". Like, I've suspected I'm on the spectrum for a long time and my current counselor agrees it's likely, but because the term "autism" is so loaded with implications of huge meltdowns and requiring assistance for daily tasks and difficulties with basic communication, using "autism" as a personal label can make me feel like I'm stealing sympathy and concern from those who need it more.
On the one hand, my executive functioning skills are pathetic, my focus is very all or nothing, and I'm well behind on social skills for my age. On the other, I'm extremely verbal, live independently, and my sensory issues are (usually) manageable. I could use more support, but I'm getting by, so it feels greedy to ask for more.

I really like that you described the spectrum in relation to the level of support needs.
Like I work in the community with seniors. Just because one senior needs three support workers to get up in the morning doesn’t mean the senior who has me coming in to prep meals, layout dishes or towels doesn’t need me.
They both matter, they just need a different level of support and the same amount of care.

I refused for most of my life to acknowledge to myself or others that I am autistic. It was based in guilt because I can mask, and I used to autistic people couldn’t mask.

Dan, I relate. I’m 52 and literally just diagnosed. I am a teacher of mathematics (who knew lol), and have finally found a comfort zone of teaching online from home (sigh of relief), so clearly very low needs. My daughter is very very high needs and has 24hr close support.

My guilt is compounded because she inherited this from me through a genetic anomaly (15q11.2 deletion).

I went through months of depression and was borderline suicidal for a while (don’t worry it has passed).

To everyone who became verbal I'll say "You won the cointoss champ, you're the survivor." we keep going. That's all we can do for those who didn't make it.

Can you expand on your needs in university?

THIS. Yes! I feel this way exactly 💯
For my daughter, who is on the spectrum (needs little support) ,and myself, who isn't yet diagnosed but has all the pointers especially in childhood!
Thank you for speaking up about this because I've never heard anyone voice it!

from what im learning, their is a stereotype of what autism is supposed to look like. But like you said it is a spectrum and it presents differently in every individual. Someone elses more difficult form of autism does not disqualify that your autism does not effect you negativley or isnt autism. The discovery of autism was a experiment or focus on young males, a very specific form of autism (mostly severe) and does not reflect the experience of all other autistic people. Masking due to trauma is also very common in “high functioning” people with autism. Most of us present more stereotypically autistic when we remove the mask or before we learned to become it in a sense. We learned to present as neurotypicals to protect ourselves and you can become very skilled at it but it masking often leads to depression and anxiety. Especially because masking is hardly ever enough to even pass as a successful neurotypical person it is often like just enough but people still targeted and bullied me even when i was masking very hard. I was always not getting good enough grades, very messy and labeled as lazy, shy, annoying, “sooo nice (basically a human doormat)”. When that burnout comes from masking, our true autistic nature can be revealed and exasperated. (melt downs, life threatening ideations, intense stimming, no eye contact, over stimulation, no self regulation.) So no one is truly high or low functioning I believe that again it is a spectrum some of us learn survival skills that make us present differently than others. Some people have it harder and cant mask at all but overall autism is difficult point blank period. Imposter syndrome and anxiety and depression can suck it. I think the guilt comes from needing to unmask due to burn out and anxiety and depression but feeling afraid to unmask because we dont want people to think we are doing things for attention(so we suppress our autistic needs more which leads to more burn out and depression/anxiety). we tell ourselves we dont need that much help/im not “that” autistic to protect society and sometimes ourselves from feeling uncomfortable. But the truth is i am autistic, masking is hard and hard to unlearn and that is okay. Just be patient with yourself overall. Unmask when you feel safe. Grieve when you didnt feel safe enough to unmask and had to deal with being triggered all day. Unmask and grieve the discomfort of people looking at you weird, snickering, or straight up shaming you and not believing you. It is not easy. Remind yourself when that guilt comes that you were forced to hide your nature as someone with autism but that doesnt make you any less autistic than anyone else and you have every right to prioritize your needs as someone with autism. You are valid and you are a voice for a lot of people who have gone their whole life undiagnosed because they presented differently.

I feel guilty all day about the little things I mess up. I always negate the fact that on paper I look like a mess, but somehow I am actually making a living, renting a home and raising a child.

I resonate so much with your comments - I do have “high functioning” in my diagnosis, but I’m not allowed to refer to myself as that these days because someone will get offended. Yet I do feel a need to define the different areas of the spectrum.

❤️❤️ thank you for this

Yes! All this, Dan, and especially when it comes to visiting my GP or when I go for a hospital appointment. It escalated during COVID.

I know that feeling when you compare yourself to "more" autistic persons, feeling guilty to even say I have troubles when someone else has much more problems. Did I tell this weird enough? :D

It's difficult to define autism, but I believe autism is a spectrum. You can be anywhere from low to high functioning, and symptoms vary from person to person. I feel like neurotypical people who judge us for saying we're autistic if we're not low functioning should educate their selves more about the condition.

i think regardless of label everyone on the spectrum has different needs and people with a "high functioning" diagnosis were never given what they need its all autism and we need to normalize asking that person what helps them rather than categorizing something that doesn't fit into categories

I just wanted to let you know I always say GOD BLESS TO PEOPLE, it’s just a blessing I like to say to wonderful people like you.👍🏻

Im so glad Dan That they don’t use high functioning autism label anymore, I have severe autism, but I’m very verbal and have extremely complex needs and I think it’s unfair to compare people I bet you feel the same way I do that my motto is 1. Everyone is equal, but not the same, and 2. Everyone is as important as each other, but in very different ways, I know that some of the most cleverest autistics I’ve met in my life have been nonverbal. There are gifts within all of us
By the way do you know anything about a type of very complex autism called Pathological Demand Avoidance, if you do please give me a reply back and I hope you like my 2 mottos, KEEP UP THE AMAZING WORK… AND I SAY GOD BLESS👍🏻👍🏻👍🏻👍🏻♾🙂

It's funny how each of us can be so different and yet have so much in common... I am more of a Spock type of person : guitl is pointless, it serves no purpose in this case, therefore I feel no guilt in this context. People are just ignorant and the main reson is that when they see documentaries or news about autism it is about non functioning or low functioning people in the spectrum. You should not feel guilty, you should not torture yourself with "why" and "why not". Keep on educating people, that's what I do. Eventually, people will realise it is a SPECTRUM.

It's the stigma. It's not the autism that creates the support needs for people, its the Need for Support. Someone's autism might lead to a learning disability, but the learning disability is not the Autism. Not all learning disabilities are autism. Not all autistic have learning disabilities. See how easy that was? Now try to get the normies to grok it!

Thank you so much, you inspire our development team to help our asd volunteers and employees. We understand exactly how misleading some corporates understand asd. Keep up the amazing work! 🙌

Dan, I think (obviously I don't know this for sure) that Abbie Maass would say "it's not tougher, it's just a different set of challenges."

I long for a day when functioning labels are no longer needed...I totally relate to the sentiment of this video! I’m so tired of having to prove” my condition to people..

It would help to have some kind of terminology or levels to help quickly explain what a persons challenges might be. My son has higher functioning autism and sometimes people who have dealt with more severe autism look at him and almost kind of think I’m babying him and don’t think he needs the support he does because he is able to make eye contact and has a great vocabulary.

I agree with you. I feel guilty saying I have autism too. And I also feel like it confuses people they don’t believe me because they are picturing a nonverbal male child. I also feel like being lumped in with people who have higher support needs makes it seem like I have no support needs. Which is not the case, I need support too I just need a different level of support. Sometimes my boyfriend has to cook for me and remind me to eat, sometimes I just need people to be patient with me when I don’t respond correctly to social situations, I might need to order my groceries online, or I might need a little more alone time. Small things like that, but just because someone has more needs doesn’t mean that my needs are not important.

I feel the same. In fact, that is one of the main reasons I am seeking an official diagnosis. Although I believe I have autism (in fact I apparently displayed so many typical autistic traits in primary school that a close friend said they were surprised I wasn't already diagnosed as autistic), I was able to function well enough in school and at work. Yes, the social aspects of both have been and continue to be challenging, but from a purely performance point of view I can't say I had any great need.

I guess what I am trying to say is I feel guilty for saying I am autistic when I don't have the same level of needs as others on the spectrum. Maybe that's just eh Imposter Syndrome talking, or maybe its the stereotypical view about autism. I want to say that perhaps we should adopt more nuanced terminology, but I don't know if that would help (especially when trying to describe it to others).

No one:
Dan: it's crazy (*about everything*)

I completely despise being able to talk to people normally but taking a long ass time to do a basic task

You keep tapping into topics that I really identify with. Thank you for putting this out there.

I've definitely struggled with this insecurity; one thing which has helped me dwell less upon it has been simply noticing my own ups and downs in terms of my functionality. I think all of us get these, even if the range of the flux is relatively small: SO much of everybody's functionality--not just us but people of all neural makups--is largely situational. The level of care and support we need will change from point to point in our lives; in my experience this is often just as true of nonverbal or "Low functioning" autistic people as anyone else. I deserve, as a human being, the exact amount of support I NEED at any given moment. There is no reason I should deserve less because some need more, at this moment, somewhere on the planet. There is no reason why any such comparison should enter into the subject of me and my needs.

I don't feel guilty. In my head I know everyone, no matter autistic are not have different abilities and different skills. No matter what somebody will be at some place better or less than me and vice versa. Autism is a human condition (unless it's in animals...possibly...). So with that in mind, every case of autism should be treated as in individual thing, and needs tailored to that specific individual.
That's where people get confused.

I think autistic guilt is a very important phenomenon to highlight, so thank you for making the video. my psychiatrist told me there is nothing about the guilt aspect described in the academic descriptions of autism, Max Derrat made a great video on this topic also.