Labels have always been something I seek out to understand myself better and find validation for what I’m feeling. Going from suspecting autism to be pretty darn sure has been a godsend, because for whatever reason (let’s be real, the people pleasing reason) I felt immense shame whenever I felt my autistic reactions to certain things, and instead of communicating my needs, I tried to squash them. Now instead of thinking “I hate when people touch me, but I just need to get over it,” I think “I am touch averse because my brain is literally wired different,” which has given me permission to communicate I don’t want to be touched.
Onto the high and low functioning labels: I really like how you discussed this. If I’d had an official diagnosis, I’d probably be considered “high functioning,” but only in the public eye. I would frequently have what I now recognize as meltdowns when the expectations of basic life became too high for me to conquer, such as not being able to find parking when already running late, or if a plan changed last minute. Academically I thrived, but I also had a specific bathroom stall at my college where I would go to curl up in the corner and cry when I got overstimulated or even slightly embarrassed (aka felt I failed at being normal).
I feel like neurotypical folks/general society created these labels without understanding the ups and downs even the most “high functioning” autistic people may experience. Some days are good, some days I can’t take care of myself. I rely heavily on frozen chicken nuggets and meal prepping for such occasions, and it took me years of therapy to be able to not dissociate while driving. I long for that autopia where there is no shame surrounding various levels of function and the focus is on getting needs met rather than how well we can blend into neurotypical society.
Thank you so much for your writing ❤️ sorry for the essay lol, I’m all or nothing.
Haha this is a space where your all is welcome - it’s nice to see other people perspective so I’m not just speak to myself lol
I do wonder what the alternative is to functioning labels or if we need them at all.
I’m with you on labels proving some sort of relief but I wonder if the label or the “answer” is what’s reliving because it sounds like you’ve done more research / learning about autism post labelling
For me. There were 4 years I knew but did nothing about it so the label was useless
I don’t see any point in trying to change what labels people do or don’t identify with, but I personally have no issue being described as having low support needs and don’t think it flattens my identity as an Autistic person. I spend a lot of time working with Autistic people typically described as high needs, and feel this has really given me a sense of solidarity with my wider Autistic community; despite my chattiness, I’ll often have more in common with a nonverbal Autistic child described as high support needs than any of the neurotypical people at work, so in that sense, I definitely agree that us Autistic folk have more in common across different support needs than we do separating us. At the same time, even though I struggle with a lot of things, I simply don’t need the level of full-time care needed to give high support needs Autistic people the best life possible, and have a lot of privileges they don’t. I don’t see it as being about dividing or flattening our identities so much as recognising that, even within the same community, we have differing access needs to help us all thrive and differing levels of privilege. Sorry for the long comment, I find this such an interesting topic and one you’ve talked about with a lot of nuance here is all so I wanted to reply with that same level!
Also - don’t think we should change labels but should interrogate what they mean and who they serve
personally being measured by my ability to function based on colonial, patriarchal and capitalist expectations isn’t my vibe but I don’t condemn anyone else who chooses to self identify in that way
I think you were so right to bring up those expectations in the post - so many Autistic people I know including myself have wondered how much easier we could process the world if it weren’t rigged against us, constantly valuing our productivity over all else, so it is really important to see people push back against that. I see these labels used pretty exclusively to differentiate care needs in my line of work but the fact that that hasn’t been your experience means there still is work to do to get us to autopia (a phrase I love!)
Appreciate the depth and think we’ve taken different ways to say the same thing. The intention of the post was to explore “both sides” hence framing it as a paradox. Everything you’ve shared about your personal experience brings that to life. We of course need labels to guide us, validate and find community. Labels aren’t bad but the use of them can be harmful/ reductive.
This is a great discussion topic. In general, I think labels can be helpful if, and when, we choose to apply them to ourselves. When they are applied to us, without our consent, they have a very high potential for being limiting, or even harmful. Sometimes, though, on a systemic level, they are necessary, in order to communicate the details of systemic inequities (eg, it's all too easy for us white people to use "I don't see color" as a way of avoiding our responsibility to disrupt racism). That being said, on an individual level, it is important for Autistics - as well as any kind of marginalized person - to be respected and believed regarding the labels we choose to apply (or not) to ourselves. That being said, there are some labels, eg "high-functioning," that can cause harm to other people if we choose to apply them to ourselves, and that makes this whole topic very complex, and requiring of nuance (which is one of the things I love about your posts, because you are so good at digging in to the complexity of things). Regarding "high-support-needs" and similar labels, I think they can - but don't necessarily - imply defect. It depends on the context in which the label is used. If we're assuming a medical model framing, then yes, those labels assume defect, or lack. If, however, we assume a social model framing, then they imply an expectation that our community will readily and willingly support and accommodate each person in those ways that they need.
“If, however, we assume a social model framing, then they imply an expectation that our community will readily and willingly support and accommodate each person in those ways that they need.”
I love this! The pressure is all consuming to make others comfortable and with their discomfort of experiencing a person that is significantly different. High expectations is apt and can be crushing because even once identified as Autistic, the effort behind’s to squeeze us into categories of cans and cannots of ‘things’
It's a tricky one isn't it? Personally I think the term Asperger's should never have been done away with, and funnily enough my diagnosing psychiatrist (a youngish person) agreed with me. He said Aspergers more accurately described people like me, and that diagnosing high-functioning people with 'autism' simply lead to more stereotyping (for others) and less self-understanding (for the person diagnosed).
Labels have always been something I seek out to understand myself better and find validation for what I’m feeling. Going from suspecting autism to be pretty darn sure has been a godsend, because for whatever reason (let’s be real, the people pleasing reason) I felt immense shame whenever I felt my autistic reactions to certain things, and instead of communicating my needs, I tried to squash them. Now instead of thinking “I hate when people touch me, but I just need to get over it,” I think “I am touch averse because my brain is literally wired different,” which has given me permission to communicate I don’t want to be touched.
Onto the high and low functioning labels: I really like how you discussed this. If I’d had an official diagnosis, I’d probably be considered “high functioning,” but only in the public eye. I would frequently have what I now recognize as meltdowns when the expectations of basic life became too high for me to conquer, such as not being able to find parking when already running late, or if a plan changed last minute. Academically I thrived, but I also had a specific bathroom stall at my college where I would go to curl up in the corner and cry when I got overstimulated or even slightly embarrassed (aka felt I failed at being normal).
I feel like neurotypical folks/general society created these labels without understanding the ups and downs even the most “high functioning” autistic people may experience. Some days are good, some days I can’t take care of myself. I rely heavily on frozen chicken nuggets and meal prepping for such occasions, and it took me years of therapy to be able to not dissociate while driving. I long for that autopia where there is no shame surrounding various levels of function and the focus is on getting needs met rather than how well we can blend into neurotypical society.
Thank you so much for your writing ❤️ sorry for the essay lol, I’m all or nothing.
Haha this is a space where your all is welcome - it’s nice to see other people perspective so I’m not just speak to myself lol
I do wonder what the alternative is to functioning labels or if we need them at all.
I’m with you on labels proving some sort of relief but I wonder if the label or the “answer” is what’s reliving because it sounds like you’ve done more research / learning about autism post labelling
For me. There were 4 years I knew but did nothing about it so the label was useless
I don’t see any point in trying to change what labels people do or don’t identify with, but I personally have no issue being described as having low support needs and don’t think it flattens my identity as an Autistic person. I spend a lot of time working with Autistic people typically described as high needs, and feel this has really given me a sense of solidarity with my wider Autistic community; despite my chattiness, I’ll often have more in common with a nonverbal Autistic child described as high support needs than any of the neurotypical people at work, so in that sense, I definitely agree that us Autistic folk have more in common across different support needs than we do separating us. At the same time, even though I struggle with a lot of things, I simply don’t need the level of full-time care needed to give high support needs Autistic people the best life possible, and have a lot of privileges they don’t. I don’t see it as being about dividing or flattening our identities so much as recognising that, even within the same community, we have differing access needs to help us all thrive and differing levels of privilege. Sorry for the long comment, I find this such an interesting topic and one you’ve talked about with a lot of nuance here is all so I wanted to reply with that same level!
Also - don’t think we should change labels but should interrogate what they mean and who they serve
personally being measured by my ability to function based on colonial, patriarchal and capitalist expectations isn’t my vibe but I don’t condemn anyone else who chooses to self identify in that way
I think you were so right to bring up those expectations in the post - so many Autistic people I know including myself have wondered how much easier we could process the world if it weren’t rigged against us, constantly valuing our productivity over all else, so it is really important to see people push back against that. I see these labels used pretty exclusively to differentiate care needs in my line of work but the fact that that hasn’t been your experience means there still is work to do to get us to autopia (a phrase I love!)
Appreciate the depth and think we’ve taken different ways to say the same thing. The intention of the post was to explore “both sides” hence framing it as a paradox. Everything you’ve shared about your personal experience brings that to life. We of course need labels to guide us, validate and find community. Labels aren’t bad but the use of them can be harmful/ reductive.
This is a great discussion topic. In general, I think labels can be helpful if, and when, we choose to apply them to ourselves. When they are applied to us, without our consent, they have a very high potential for being limiting, or even harmful. Sometimes, though, on a systemic level, they are necessary, in order to communicate the details of systemic inequities (eg, it's all too easy for us white people to use "I don't see color" as a way of avoiding our responsibility to disrupt racism). That being said, on an individual level, it is important for Autistics - as well as any kind of marginalized person - to be respected and believed regarding the labels we choose to apply (or not) to ourselves. That being said, there are some labels, eg "high-functioning," that can cause harm to other people if we choose to apply them to ourselves, and that makes this whole topic very complex, and requiring of nuance (which is one of the things I love about your posts, because you are so good at digging in to the complexity of things). Regarding "high-support-needs" and similar labels, I think they can - but don't necessarily - imply defect. It depends on the context in which the label is used. If we're assuming a medical model framing, then yes, those labels assume defect, or lack. If, however, we assume a social model framing, then they imply an expectation that our community will readily and willingly support and accommodate each person in those ways that they need.
Ooo I hadn’t considered this…
“If, however, we assume a social model framing, then they imply an expectation that our community will readily and willingly support and accommodate each person in those ways that they need.”
Thank you for contributing it to the discussion ✨
I love this! The pressure is all consuming to make others comfortable and with their discomfort of experiencing a person that is significantly different. High expectations is apt and can be crushing because even once identified as Autistic, the effort behind’s to squeeze us into categories of cans and cannots of ‘things’
Literally, everyday is different when so much of how autism presents is in response to the ever changing world
It's a tricky one isn't it? Personally I think the term Asperger's should never have been done away with, and funnily enough my diagnosing psychiatrist (a youngish person) agreed with me. He said Aspergers more accurately described people like me, and that diagnosing high-functioning people with 'autism' simply lead to more stereotyping (for others) and less self-understanding (for the person diagnosed).