“I’m one of those cripples with a care plan, which places me more among the unliberated cripples than not. I’ve been required to have a care plan pretty much my whole life. First it was because I was an inmate in a state-operated boarding school for cripples. Now it’s because the state pays the wages of my pit crew, which is what I call the guys who get me dressed, put me on the crapper, etc. Thus, I am required to have a care plan. Except in this case it’s called a service plan. My service plan allots me X number of hours per month for getting dressed and X number of hours per month for taking a leak and so on. It does not allot me any hours for getting blotto drug and waking up in a tattoo parlor in Reno or for trying to get laid.”—
I’ve got two care plans. One from the DD agency, one from the agency that provides LNAs for personal care. The DD one actually probably would allow getting laid as a goal, although it probably wouldn’t word it like that. The VNA one absolutely wouldn’t. But I hate them. I really hate them. I resent people who come into my home and try to ask me what my goals in life are so they can put them in a fucking file somewhere. I know that the “what are your goals in life?” thing is supposed to be all progressive and crap, but in practice it feels like being asked to tell the state my innermost feelings, and I don’t want to do that. Consequently I rarely participate much in the production of my ISA (what the DD agency calls a care plan — the VNA just calls it a care plan) because I can’t handle the whole thing where I’m supposed to put my soul in a file for the state. Plus I don’t think of my life in terms of goals, never have, never will. That’s gotten me in trouble before, the case manager from hell (my first ever case manager, too) once wrote something like “the client refuses to tell any goals because she claims her brain doesn’t work that way”. Then she just made up a bunch of goals for me, and… well she actually pretty much fabricated the entire IPP out of thin air.
Anyway, I have only had care plans as an adult, not as a child, but I’ve had them my entire adult life and at this point I don’t even remember what it was like before I had them. There’s so much of my life where I’m used to bureaucratic BS that I don’t even know what a ‘normal’ life would look like without all that.
Yes, I probably would. I don’t think I’d rule anyone out by neurotype.
People think that sharing a neurotype causes understanding and consideration. It doesn’t. It can contribute to mutual understand and mutual respect, but it’s neither necessary nor sufficient.
CNN once asked me if I’d live on an island that was all autistic people. The idea sounded dreadful to me and I told them so. Not that I’ve got anything against autistic people, but it just sounds horrible.
What do you listen to when you need to concentrate?
I’m curious what music/sounds other autistic people listen to when you’re studying or working. I find I concentrate best with things that are repetitive and are low on lyrics, so I’m wondering if this is the same for other people.
Edit: also why do prefer the things you prefer?
Country music: Lacy J. Dalton, Dolly Parton, Kathy Mattea, Loretta Lynn, Pam Tillis, Buffy Sainte-Marie, Loretta Lynn, Patsy Cline, Gail Davies, Rita Coolidge/Kris Kristofferson duets. They are the people on my main playlist anyway. My favorites are Lacy J. Dalton and Kathy Mattea.
I like country because I grew up on it, my earliest memories of listening to music are country. We listened to so much country, that I didn’t realize it was all one genre, I thought the different types of country I heard were all entirely different types of music. It reminds me of home, it reminds me of the best parts of my childhood, it makes me feel whole and comfortable and connected to the world. Lacy J. Dalton especially has this weird effect on me where when I listen to her music, I can actually feel my body better, and I feel more connected to my body, more physical, more connected to the world in general. So I listen to a lot of her. Some of Kathy Mattea’s latest music (especially the stuff where she comes back to her Appalachian roots, instead of singing more generic country) can have a similar effect on me. I also like the way country usually has to do with telling stories, at least all the good country is like that.
So I listen to a lot of country when I’m doing projects of various sorts, or just while I’m on the computer. I’m listening to Kathy Mattea right now — “Gone, Gonna Rise Again”.
Some Autistics have a speech delay, some speak at a typical time, some early. I don’t know the ratios though.
I spoke at a typical time. How about everyone else? Early, typical or delayed speech?
Slightly early (not sure if the speech was real or echolalic), followed by loss of all speech, which turned into a mild delay, and then echolalic speech after that, which evolved eventually into plausible-sounding speech that wasn’t as communicative as it sounded (it was basically super-fancy echolalia, but not always the type used to communicate things, whether it matched my thoughts was pretty random). Followed by a much more gradual loss of speech starting in adolescence, where I’d have periods of lack of speech that got more frequent and wider and wider over time, so by my early twenties I had no communicative speech and often no speech at all. I’ve only had real, communicative speech twice since then — once for a few days, once for an hour or two, both in extreme stress situations, neither one something I could control — it left as suddenly as it appeared. And this is all the short version, the reality is even more complicated. But basically, right now, I have most of the time no ability to make any sort of speech, but a small percentage of the time I have verbal tics and echolalia that I suppress in front of people and that has no communicative value whatsoever.
i was in the actuallyautistic tag and there was a post abt how sitting/standing in an odd position can be bc of sensory stuff and that makes a lot of sense as to why i always find myself leaning to the right a lot
my head naturally tilts that way, like a lot (im doing it right now) and when i sit in chairs i find myself putting more pressure on the right side. trying to sit straight feels rly odd and just not comfortable for me so i have to do it to be comfortable
i remember going for a haircut one time and the hairdresser got so annoyed at me bc they were trying to cut my hair but couldn’t do it properly because my head kept tilting to the side without me realising it uvu
My head tilts to the right, but I think it’s a neuromuscular thing and not an autistic thing. It’s getting to be incredibly painful, so my physical therapist is giving me exercises to strengthen the muscles and hopefully straighten my head out. Because the muscles in one area have gotten so tight they hurt like hell all the time, and restrict my range of motion despite normally being hypermobile. Problem is whenever I tilt my head to the left, it somehow ends up going right back to the right within seconds of me getting distracted.
One thing my physical therapist has trouble understanding is that I can’t multitask so I can’t concentrate on posture while also typing, for example. She insists that if I keep trying it will become habit, but that’s never been true before, she’s not my first physical therapist to suggest this. But I just let her say that, and let her think that, because I don’t think she would understand even if I explained it over and over. Because she sees this as stuff that’s hard for everyone, when I’m talking about specific, autism-related cognitive problems that make it harder than it is for everyone else, even if it is already hard for everyone.
She’s a really good physical therapist other than the fact that she doesn’t grasp my cognitive problems at all. So I just kind of have to let her think whatever she’s going to think, because explaining does no good. She was surprised that I do all my exercises at home when caregivers are there, instead of alone. I couldn’t explain to her that I can’t initiate or continue anything like that without prompting of some sort. She doesn’t get autism or autistic catatonia. She couldn’t even understand why I can’t count in my head when I’m doing my exercises, why I need anyone to count for me. Because I lose count after five or fewer, that’s why. But… whatever, she’s good at what she does, really good, aside from that, so I can deal with her not grasping autism or cognitive disability in general.
A summary of the issues related to identifying autism in women and girls, based on research carried out by Dr Judith Gould and Dr Jacqui Ashton Smith.
I thought I would share this resource, since it was definitely the thing that cemented the idea that I had autism for me. It’s basically a list of ways in which girls can present syptoms differently than boys.
I mean, I saw these and was like:
- Girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger syndrome (Attwood, 2007).
Yep, I do that. Badly, but I still do it.
- Girls are often more aware of and feel a need to interact socially. They are involved in social play, but are often led by their peers rather than initiating social contact. Girls are more socially inclined and many have one special friend.
Yup. I rarely had more than one good friend at a time at school and I still struggle with being the one to suggest going out and doing things.
- In our society, girls are expected to be social in their communication. Girls on the spectrum do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication. The idea of a social hierarchy and how one communicates with people of different status can be problematic and get girls into trouble with teachers.
Not usually trouble so much as realising too late that what I said was probably inappropriate. Like repeating details about my friend’s sex life… So, yeah…
- Evidence suggests that girls have better imagination and more pretend play (Knickmeyer et al, 2008). Many have a very rich and elaborate fantasy world with imaginary friends. Girls escape into fiction, and some live in another world with, for example, fairies and witches.
Well, more like Jedi and space monsters, but same difference, right?
- The interests of girls in the spectrum are very often similar to those of other girls – animals, horses, classical literature – and therefore are not seen as unusual. It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests. Many obsessively watch soap operas and have an intense interest in celebrities.
Okay, well, this is a little less cut and dry because I have both female-coded and male-coded interests. I had a notebook filled with alternating dress designs and sketches of comic book characters.
Anyway, enough blabbing from me. Just thought I’d share.
Someone was asking me for this kind of resource, I haven’t got the chance to answer the ask yet, but hopefully they’re reading this.
[This is where people send me an age under 34 and I tell them what I’d have blogged about at that age.]
Cocteau Twins, Enya, Dead Can Dance, The Beatles, and Pink Floyd — I’d have posted lyrics and, in the case of the Cocteau Twins, gushing descriptions of how amazing they were. I tended at that age to listen to single songs on infinite repeat for days on end, I actually broke cassette tapes by rewinding and playing the same song too many times sometimes breaking multiple copies of the same tape. And I’d write lyrics over and over and over again, at least, the lyrics as I understood them. (A couple years later I’d have access to FTP sites with song lyrics, but not yet.)
Sixties pop culture.
Alternate realities. In general. Like not specific ones, just the idea of alternate realities.
Whether the world is real or not.
Bad poetry, mostly dealing with whether the world happened to be real, or with themes that seemed ‘surreal’ to me.
Surrealism, for that matter.
Dreams. Lots and lots of stuff from dreams, including lucid dreaming which I did constantly at that age as a way of escape.
And I would have posted a lot of things that sounded like nonsense but were my way of stringing words and sentences together in unusual ways. Some of which was communicative but a lot of which wasn’t.
And I’d have posted things I got from hearing other people say them, and from books, all mixed together, as if it was actually my thoughts.
This is all based on what I posted on BBSes at that age, and what my special interests were. All of this seems like a lot of interests but it’s basically all one or two interests tied together, all having to do with things that I thought made reality weird or unreal, which was my main special interest at the time.
(Posting to actuallyautistic also, because this is a good description of my special interests at age 12, and because of the weird communication stuff at the end, which I did actually write, I just didn’t have a blog to post it on. So I’d post it on BBSes or write it in notebooks and stuff.)
People like me.
I realized recently that when I describe ‘people like me’ in terms of the way I process information, being highly sensing, and other things like that, people might assume I’m only talking about some subgroup of other autistic people. But that wouldn’t be true.
There are autistic people I relate to very strongly. And they come from every diagnostic category and every functioning label, because nobody has come up with an official category that defines my sort of autism.
But there’s other people I relate to very strongly as well.
There’s some people with intellectual disabilities, who are not autistic, but have similar processing issues to me. They often are labeled as having a severe or profound intellectual disability, but some are labeled as having a mild or moderate one too.
There’s some people with epilepsy that is severe enough that they seize every few seconds. This interrupts their sensory processing and cognitive abilities in a way that can resemble my sensory and cognitive processing issues.
There are people whose only diagnosis is various sensory processing disorders, whose experiences can resemble mine, although this seems to be a bit rarer.
There are people who have had strokes or brain injuries or dementia who have very similar processing styles to my own, even if they didn’t before the onset of their condition.
So basically, when I talk about ‘people like me’ in terms of sensory and cognitive processing, I’m not just describing a group of other autistic people. I’m describing a wide and diverse group of people with disabilities, that have somehow led their brain to process things in a manner extremely familiar to me.
When we meet, we often click instantly. I have had conversations across the room with strangers who were ‘like me’, while staff looked on and saw no communication at all, because they didn’t know how to recognize non-standard communication. And those moments of communication with total strangers, undetected by staff, sustained me for a long time when I was quite lonely. The strangers were not always autistic, but they did always have a cognitive disability of some kind. Some of them could speak and others couldn’t, but all of us could converse without speech, in ways that were instinctive rather than learned.
I’ve also been diagnosed with SPD, although it was called sensory integration dysfunction when I was diagnosed. But of course when you’re autistic, that can be pretty much just them taking out certain aspects of autism and giving them a name. When you’re not autistic, of course, it’s different. My brother and I both got diagnoses of SID, him at a very young age, me at around age 17. I’ve also been diagnosed with CAPD and Irlen syndrome, which basically amount to auditory processing problems and visual processing problems. My visual processing problems are more severe than any of my other sensory processing problems, and auditory is second most severe. I think my best senses are smell and kinesthetic.
I notice that online a lot of the autistic people’s most severe sensory processing issues are auditory rather than visual. I don’t understand quite why that is. I have auditory processing issues, but they pale in comparison to visual processing for me. I know there’s other people out there with similar visual issues though.
But if you’re not autistic, you may be what we call a cousin, which is someone who can relate well to autistic people’s experiences due to a separate neurological condition.
It is frustrating to me that I even need to express my support of self-diagnosed people. It’s frustrating to me that my professional diagnosis gives me more credibility in some people’s eyes than you have. These things are infuriating to me, because I don’t see self-dxed people as fundamentally different from professionally-dxed people or semi-dxed or peer-dxed people or any of the other diagnostic states that exist. I’ve simply known too many autistic people, read too many things by autistic people, to see any difference at all in overall life experience between those who managed to get a diagnosis and those who didn’t.
I know such people exist, although far more trolls pretending to be such people exist than such people actually exist, and far more people inflate the numbers in their head so that every time they see one they assume the existence of dozens. I’ve known people like that. Although often they are actually confused, not mocking, and there’s a huge difference between the two. Being confused about your identity should not be a crime. Nor should trying on identities, including neurodiverse identities, during periods like adolescence when trying on identities is practically obligatory and people do things like that and it really isn’t the big deal people make it out to be.
They do less harm, even at their worst, than coming down against self-diagnosis in general does. And they do far less harm than assuming that self-diagnosis is always, usually, or even often like what they are doing. Most people who self-diagnose are people who have taken months or years to research themselves and their conditions. Most people who self-diagnose take it very seriously.
And I don’t think it’s fair to, when talking about self-diagnosis, jump to the worst examples. Because they are outliers, and because most people who self-diagnose are doing something pretty legit, and because then it just spreads the idea that self-diagnosed people are people who randomly collect mental disorders and/or mock people with mental disorders. Because that’s not what most self-diagnosed people do. And even bringing them up over and over in conversation makes it sound like there’s more of them than there actually are. (And I don’t count trolls. Trolls are trying to stir you up. I’m not going to go to that blog and look and judge someone, either.)
on Simon and River Tam, autism, abuse, and alternate universes
I just realised that July’s nearly over already and I haven’t contributed anything to disabilityfest yet. So in lieu of any ability to create graphics or fanart or fic, I started writing a list of my autistic headcanons (as I’ve seen a few other people do), but when I got to ‘Simon and River Tam’ I realised all I really want to do is babble about them, because holy hell I have a lot of Thoughts.
So, here’s a bunch of rambly emotional meta about the Tam siblings, and why I think headcanoning both of them as autistic is particularly interesting.
Disclaimer: emphasis on ‘headcanon’. I recognise that neither of them are canonically (unambiguously) autistic. River is canonically neurodiverse (hence I think it’s okay to include her in disabilityfest, so hopefully this headcanon-y post is acceptable?), but her most obviously neuroatypical traits and behaviour are clearly stated to be a result of the abuse and medical experimentation she experienced. I am absolutely not saying that those trauma-related traits/behaviours/mental illnesses = autism. Obviously abuse did not make her autistic. I’m saying that I headcanon her as autistic regardless, and I want to talk about how her abuse and subsequent ‘extra’ neurodiversity relates to that.
[Warning for references to: the abuse and medicalised violence experienced by River in canon; real-word abuse of autistic people, particularly autistic children and especially in educational or medical contexts, including mentions of my own childhood abuse; sexism and the erasure of young autistic girls; dehumanisation of autistic people; PTSD and other assorted mental illnesses as a result of trauma. Also: one ableist slur quoted from canon; sarcastic use of functioning labels and other ableist language; and swearing.]
River really reminds me of me as a teenager.
My autistic brother and I are in a weird position though — it’s sort of like a weird inverse version of this.
He’s the one who’s more successful by most people’s standards. He has a job, he takes care of himself, he doesn’t get any extra assistance with life really. Nothing that nonautistic people don’t get as well, I mean.
I’m the one with the huge list of chronic illnesses and mental health issues and physical disabilities and PTSD and all that stuff.
People call him high functioning or Asperger’s, people tend to call me low functioning even though I don’t like the term.
And so there’s a reflection of what you describe, there, between yourself and your sibling, and River and Simon.
And yet I also think I’m probably happier than he is, I think I know myself better than he knows himself, I think I’m more grounded in something incredibly solid about the world, than he is. There was a long period of time when I was the “damaged one”, but eventually that stopped being who I was. And now I feel like every day I am becoming the person I was meant to be, and that person was never meant to be a “the-world success story” as Donna Williams puts it. That was who other people expected me to become based on false ideas about giftedness, among other things. That was a possible future that everyone believed in but me. But that was never going to be it. That was never going to be me. That was never supposed to be me. And I don’t feel robbed of it, because who I am now, is exactly, exactly who I’m supposed to be. And if I hadn’t “failed at life” in most people’s terms, I wouldn’t know who I was, I wouldn’t have the ability to connect to the layers of reality that sustain me, I wouldn’t have everything that is important to me now.
And that’s where it all becomes weird and inverted.
Because on the surface, my brother and I are much like you describe.
But underneath, there’s something very different going on. And I think that could happen for River too. I don’t think her only future is to be a ‘damaged person’ for the rest of her life. I don’t think that being Simon would have been good for her. I don’t think what happened to her was good, but it happened, and now she is who she is, and I honestly don’t think she would’ve ever become a “the-world success story” even if it hadn’t happened. I don’t think Simon’s life is for her. I think she has another life to lead, and the longer she is away from the sources of her problems, the closer she can get to that other life. And that life may prove to be more rich and rewarding for her than Simon’s was for him, for all anyone knows. She’s clearly very ‘sensing’ in a way Simon is not, and that can come with a lot of difficulties, but it can also come with a lot of rewards, it’s a double-edged sword.
Anyway… I can see a life like my life now as one of her possible futures, and while most people would look at my life and see nothing all that good or interesting or rewarding about it, they don’t live my life, so they don’t know. But I think a life similar to mine is what someone like her would get as a possible future among the better-case scenarios. There are of course a lot of scenarios that are much worse, and you can’t know which one will happen until it’s happening. I certainly never expected to be who I am now, I never expected all these disconnected elements of who I am to connect into something solid and whole and beautiful, but that’s in the process of happening, and it’s amazing. I would not trade my life for a the-world success story if you paid me millions of dollars. My life is my life, and the most important part of that is that I’m becoming who I’m supposed to be. Which is something that is open to everyone.
So looking at my (autistic) brother and me, I can see the River/Simon parallels in some areas. Including the thing where I was supposedly more gifted than he was and supposedly good at everything and supposedly had this bright future (but was also the less “HF” of the two by most people’s standards) then ended up damaged and institutionalized and tortured (by which I mean torture the form of abuse, not tortured as in emotionally tortured, although that happened too I guess) and shit. And I can see a point in our past where everything you say about the parallels looked true.
But now there’s this weird inversion going on, where even though he’s the the-world success story, and I’m the one living on disability and needing intensive caregiving and stuff, I’m probably better-adjusted in many ways than he is, and better connected to some deep areas of reality. (Which he would laugh at, but we haven’t talked much since I was a confused and disoriented teenager.) And I see that potential for River and Simon in the future as well, despite how bad things look for her now. Because I can see that current of marona in her (that’s a word I made up for something that doesn’t translate well from sensing) that could sustain her and build her up into who she’s supposed to be, if all the right things were to happen, if she met the right people, if everything went the right way. And I don’t see Simon as being in touch with marona in the way she is, and I don’t see him as having much of the capacity for that.
I’m not trying to come off as saying that I’m better than my brother, by the way. My brother and I are very different people. We both have our strengths and weaknesses and we are who we are. We’re in many ways total opposites when it comes to autism (and I don’t mean functioning labels, I mean like every autistic trait that I have, he has the opposite version, and vice versa), yet we do have some things in common. And at any rate, I’m not trying to come off like it’s better to be someone like me than someone like him, it’s just that he’s never seemed to be as in touch with who he is, as I am in touch with who I am, now. I don’t see anyone as better than anyone else, everyone has connections to the deeper parts of reality, everyone has the person they are meant to be (and for each person that’s different), but not everyone is aware of themselves on that level, and I think that’s where he and I differ in many ways. And I see River as having more potential for that awareness, and more potential for the wholeness that comes from that awareness, than people give her credit for.
So I guess I see something like my life as a possible River Tam future, and a good River Tam future, no matter what anyone else thinks of my life. (I used to want to make a video telling autistic people that a future like mine is possible, because if I’d known that, I maybe wouldn’t have tried suicide so many times. And people said things like “you’re on welfare and in need of so much care, how can you possibly call that a good future for anyone, why would anyone want your life?” And I didn’t know how to tell them… when I was a teenager, I knew I would not grow up to be a the-world success story, and the only two options I was given was to either be a the-world success story, or to be institutionalized forever. To be severely disabled and not institutionalized and not miserable was not an option that I was told about until I encountered the autistic community. Being on welfare and being in need of care are trivial next to living in freedom, and anyone who doesn’t grasp that has probably never been threatened with lifelong institutionalization if they couldn’t measure up. Um… tangent over.)
I hope it was okay to add all of this. I find River to be so familiar from my youth, and your description of family stuff to be so familiar from years ago, and yet… the weird inversion thing happened, and my life is so different now than anything I could have ever dreamed at either point in time. So I have hope that hers could be too. She’ll never be who she would’ve been, but then again neither will any of us. She is who she is, and that’s still someone beautiful with a lot to offer the world, who still has some amazing possible futures that look nothing like what a nondisabled person would expect a “good” future to look like, but are still amazing.
And I have a suspicion (or a headcanon, anyway) that, like me, even without the abuse she went through, she’d never have been a the-world success story. That was a mirage in other people’s minds, not a reality. The things Simon says about her pre-abuse abilities are not unbiased or fully factual, they’re embellished by a lot of his own biases about the world. I think she would’ve run into trouble functioning in the NT world either way, eventually, and would’ve had to deal with that as best she could. And I suspect she would’ve run into the thing I ran into in adolescence, where her brain just went “nope not doing this stuff people expect anymore, gonna do what I’m good at, drop everything else, no matter how important the ‘everything else’ is”. But that’s because I see a lot of myself and my friends in her, and… highly sensing people don’t tend to last as ‘gifted’ in the way that other ‘gifted’ people do, no matter how extremely ‘gifted’ we’re initially described as.
How weird is it that I was professionally diagnosed as a kid but I squirm at people shitting on self-dx
Like idk why that is but I feel like trying to put words to it would just make it all about me
I was professionally diagnosed when I was 14, and I really hate people shitting on self-dxed people because I care about what happens to people, even if their life experiences are different from mine. And because I’ve seen so much horrible stuff happen to self-dxed people who can’t get services, so I know they’re going through really awful stuff a lot of the time and then they get crapped on by the community that should be there to help them. Which in extreme cases can lead to death, and in less extreme cases “just” makes people suffer a lot. That’s why I care, I don’t know why you care. But it is definitely not wrong for you to care. In fact having the visible support of professionally-diagnosed people can really help self-dxed people gain acceptance sometimes.
I am sorry to post the weird photos
But I needed to do some tumblr cleaning (I still need to do a lot). i don’t know how to link them as private pictures and have it show up? it’s giving me grief. it will go away soon.
anyways, if you go under my ABOUT ME, and click on “AUTISM" (it’s a link), the two links with my paperwork should show up. i blacked out my family name (i didn’t with my aunt but i don’t think her last name alone should be too bothersome, otherwise that’s getting blacked out too) and parts of street addresses that could identify me/get me doxxed. otherwise they remain intact for anyone who wants to say i’m pretending to have a disorder to ‘be cool’, ‘parade around being sick’ and ‘make things up just to find a community for my wrong ideas’. if you want to tell me they’re fake, be my guest. as a non professional, you must know my autism better than those people at columbia right? what do doctors know?
I once posted something like twelve different instances of autism-related diagnoses, in detail, on my blog, dating from the age of fourteen (actually I think I even posted some pre-autism-dx stuff from age 13 that had autistic traits described in it but no dx yet) to the age of twenty, and still got called a faker. People who say those things, don’t generally give up when they see a set of diagnostic paperwork. Or maybe you have less insistent assholes than I do, we can hope. But just a warning that even diagnostic paperwork won’t always do the trick. And when I posted mine, they basically used it to get more information about me in order to improve their cyberstalking — and it wasn’t the information you’d think, it was little things that I hadn’t thought of. I regret ever posting my diagnostic papers online, but YMMV.
That’s OK I had a time like that too, I just had to spend some time to reinvent myself and rebuild my defenses. It’ll be OK, I promise.
This is something I’ve been feeling for years. Ever since I was young I’ve had to find ways to appear allistic so as to hopefully cut down on bullying, leading to a long list of ‘rules’ that almost my entire life has gone by, building a shell of an allistic facade that suffocated what was underneath and didn’t allow it to grow, until it shriveled up and I fear there’s very little left of it, save for that which managed to entwine with the shell I had built.
Typically, a person discovers who they are and builds who they are as they grow up, but I was faking what I could and never had a chance to build myself. I can’t reinvent something that never really existed in the first place.
You don’t have to take my advice. I don’t know you, you don’t know me. But I wanted to say this because I know a lot of people who’ve been through something like that. It’s a very common problem for autistic people who’ve either managed to pass, or tried very hard to pass (whether they were actually passing or not), or worked too hard to function to the point of burnout, for a long period of their life, starting very young.
A big mistake people often make is that they try to go back and figure out who they used to be, before the pretending to be NT started. And if it started young enough, then they’re not going to be able to remember a lot, or find a lot. But you don’t need to find who you used to be. You need to find who you are now.
And I guarantee that if you care that this is happening, then that part of you that cares, that’s you.
It can be incredibly disorienting to try to discover what’s under all those layers of faking it. And to wonder if there’s anything under there at all.
But there is always someone under there. If there weren’t anyone under there, you wouldn’t care about any of this. You wouldn’t be upset by it. You wouldn’t feel anything at all about it. The fact that you feel all this proves you exist. And the feelings may be negative, but they’re yours, and that means something important.
You don’t need to reinvent yourself, or invent yourself for that matter. What most people seem to find works, if they really want to find themselves, is to take a lot of time dismantling the facades. Taking them apart, dropping the act. This can be scary, and it can even be somewhat dangerous if the act is part of what keeps you functioning. So don’t undertake it lightly. But if you want to be yourself, and want that really badly, then you do have to drop the act at least for awhile.
(Some people find that they drop the act, find who they are, and after that they are able to go into a situation where they can decide whether to act or not, rather than have the act take over their lives. Others can never get the act back no matter what they do. It’s unpredictable.)
Anyway, the more false stuff you remove, the more real stuff you will see. And the real stuff is not who you were a long time ago, it’s not who you would’ve been if you never acted, it’s something that comes through every moment. It’s there right now, you just can’t see it. It takes time to be able to even detect yourself. Who you are is something that is happening right now and only right now. You can’t go back and find it, you can’t invent it, you have to learn to see it. And that takes time and practice and effort, but a lot of autistic people have been through this. It’s extremely common, I can’t emphasize enough how common it is.
I know a woman who basically put on an act throughout her entire life starting in childhood and ending in her fifties or sixties. She spent so much energy acting that she had no idea what was actually happening to her during all that time, because all her focus was on “how do I appear normal?” and not on “What am I doing and who am I and what am I feeling and what is happening around me?”
Her act fell apart in her fifties or sixties, I forget what caused it to fall apart, but it fell apart. She was left with no understanding of what had happened in her life up until that time. She had a husband that she couldn’t remember why she married. She had a job that she couldn’t remember why she’d taken. And all of her ability to put on an act and function like an NT had just vanished completely. She had no idea who she was and no idea if she’d ever find out who she was. She felt like she wasn’t even human.
But with the support of her husband (who was incredibly understanding about the whole thing, considering she barely knew him when she “woke up”), and with a lot of time and effort, she figured out who she actually was, as an autistic person. She learned to function as an autistic person rather than as a counterfeit NT. She got an autism diagnosis. She has a job now that involves helping other autistic people with sensory issues. And she’s got an entire life in the autistic community. But most importantly, she knows who she is now, the act is gone, she lost fifty years of her life to it, but she still knows who she is now.
Because who you are starts now. Always now. Whenever now is. And you might not be able to feel it yet. But you’re there. And everything, all the agony you might feel about this, even if all you feel is numb, you’re still feeling, and that’s you, and that’s important. Even if all you feel is negative to begin with, that’s still you. I’ve seen a lot of autistic people go through this. I’ve been through a less-intense version of it myself — and the woman I just described, she helped me through it, because she knew what it was like even more than I did, she’d been through more “lost” years than I’d even been alive. In fact she’d been through more than twice as many “lost” years as I’d been alive when I met her.
But one thing I found is that the “lost” years aren’t really lost, because I was there. I might not have been visible to other people, or to parts of myself, but I was there, and I can see myself now at times in my life when I couldn’t see myself at the time. I was a person who wasn’t exactly passing (I could only pass for different kinds of abnormal, not for normal), but I was putting so much energy into functioning that it had a similar effect to people who pass.
Anyway… I know how it looks when you’re in the middle of it and you can’t see yourself, you can’t find yourself, and you don’t think you ever will. But after having been through what I’ve been through, and after watching (to a greater and lesser extent, some watching very closely, some just from a distance) over a hundred autistic people go through the same sort of thing, most people make it through in the end and find who they are.
But the biggest mistake I’ve seen people make, again, is looking for themselves at any point other than now. Looking for “the self I used to be” or “the self I would have been” instead of “the self I am”. Because the self you are is the one that matters, and you can bring that into focus eventually. It’s hard, and it’s almost impossible to explain how to do it, but it can be done, and it is done by autistic people every single day.
One thing that I had to do that was very important was to remove myself from all relationships where people wanted me to be someone I wasn’t, or where people had a negative influence on me. That meant cutting a lot of ties at once and becoming very isolated for a long time. I was lucky to have someone from the autistic community who took on a mentor role — a real mentor role, not the bullshit pre-packaged Mentors-R-Us(tm) thing. She’s now like my second mother. She guided me through a lot of this and that really helped. (She’s not the same woman I described above, but that woman helped too. There are a lot of autistic people who understand what this is like and can help to greater or lesser extents.) But I also had someone else in the autistic community who tried to take on a mentor role without my full consent and that went very bad. She thought she was doing the right thing but she was a very confused person herself, and she only led me in confusing directions. So not every autistic person going through this can help, but some can.
And sometimes you find yourself and lose yourself again and find yourself and lose yourself again and that’s okay too. It’s important to let it be okay that you don’t know certain things, that you don’t know who you are, that you don’t know more things than you do know, about who you are. Figuring yourself out, if you undertake that process, takes time and energy and effort, it never happens all at once, it never comes easy, but everyone I know who’s managed to come out the other side says it’s more than worth it. You don’t have to, though, if you don’t want to, or if you just can’t right now. But it’s definitely worth trying and trying again, at least from my perspective. For me it was like hammering my head against a brick wall and wondering why I was doing this over and over and over for years and years and years, and then one day I just sort of noticed all the progress I’d made in all that time, that I’d been unaware of because it had happened so slowly. I’d become happier, more grounded, more aware of who I really was, and it had all snuck up on me because it happened so slowly. When I look back on how miserable I used to be it’s hard to believe sometimes how much change has happened since I became an adult.
I hope any of this information is useful to you. You don’t have to use any of it if you don’t want to, but I wanted to put it out there both for you and for anyone else who might be going through this who could use it.
Because this is, unfortunately, a classic (and horrible) situation for an autistic person to end up in. And all sorts of autistic people end up in it, from people who pass perfectly to people who have never passed but who still tried to be something they weren’t. It makes me angry that we are pressured into this, that when we manage to lose ourselves completely we become “success stories” in the eyes of the rest of the world, that none of the people who push us into this have to deal with the wreckage when we finally wake up to the fact that we aren’t who everyone thought we were. It makes me furious the way most autism programs encourage this, this is what the worst of behavior mod does to people, I know people whose lives were destroyed by behavior mod, I know people who basically function like robots due to behavior mod but are applauded by all the nonautistic people around them… and yet behavior mod is still one of the big things everyone uses to force us to act like someone we aren’t. It doesn’t matter if it rips us apart inside, as long as we look normal. (Worse, some autistic people go through behavior mod, get pronounced “cured”, and aren’t told they are autistic, until they discover autism on their own as adults, then finally their parents say “oh yeah you were autistic when you were younger but you aren’t now.” So many things about this situation piss me off. Sorry for ranting on your post.)