Lots of autistic people are put under immense pressure because of their neurodivergence, and not everyone knows how truly harmful it is to themselves
This is something i personally go though a lot, often without intention. It has just become a habit to scrutinize myself in any social situation and it’s honestly exhausting
I can’t tell you enough how harmful it truly is that society puts this pressure on people, on children, and teaching them that from diagnosis they should do everything in their power to restraint themselves and change, just because our natural way of being isn’t “normal”
Please, if you are on the spectrum, remember to take care of yourself, don’t hold your needs back. And if you are not on the spectrum, but know someone who is, be mindful of their needs and don’t pressure them to be “normal”
I’ve tried that. And sometimes it helps for a little while. But then if people do further research they learn it’s CFS and it ends up only being a brief respite from the overall stigma. I’ve even had a few people think I was trying to bamboozle them with scarier medical jargon.
I tend to use Chronic Fatigue Syndrome for a couple of reasons.
First, it tells people what it is in the name and I like that simplicity. Some people do feel it downplays how tired people actually are. I can see that. I would be open to expanding the name to Mega Chronic Super Fatigue Syndrome. Which is a shorter version of my other name idea…
“No, you’ve never been anywhere close to this tired. Even that time you studied late and had a test in the morning.” Syndrome.
I also feel like if I can help eliminate the stigma using the harder path, the results will be more robust in the end. If I can convince someone that CFS is often a debilitating horrible condition and undo all of their preconceived notions, I know that work I’ve done will stick.
I just don’t know if tricking someone out of ignorance is a great longterm strategy. It’s not a product that can be rebranded. People will catch on eventually. Or it won’t stick. I mean, I tried calling him Dwayne for a while. I tried smelling what Dwayne was cooking. It just didn’t take.
CFS is part of my identity and I don’t think I should have to call it something else to appease the ignorant. It shouldn’t matter what it’s called. It’s real. It sucks. And I am determined to convince anyone who disagrees otherwise no matter what they refer to it as.
That said, I do not judge anyone who wants to use alternate terminology. CFS is just the label I prefer. And if there is some research or evidence that says changing the name will have a significant impact on eliminating the stigma, I might reconsider. My anecdotal findings say that it doesn’t change much.
Also… it’s possible… that mayyyybe… perhaps… I might avoid calling it that because I have never successfully pronounced or spelled Mycologic Encephalogram correctly on the first try.
Yes, I’m aware I just said mushroom brain scan.
Close enough.
This is a good response. Also reminds me of how the r word used to be a medical term, and we had to stop using it as a medical word because people started using it as a slur. Sometimes playing the language game isn’t going to help if the concept behind the word is what people are being prejudiced against. The idea of someone being exhausted for “no reason,” to the point it’s disabling, is what people object to, not the word you use to describe it. The foundation of ableism has two pillars: One, that disability doesn’t exist, and two, if it does exist, then the people who have it are not full citizens and don’t “deserve” to be a part of society.
I had a really weird experience with CFS. Which is it was my diagnosis for years, I had no expectation it would ever not be my diagnosis, and then it turned out I had a congenital neuromuscular condition. I still think CFS was a useful diagnosis for me to have. Because:
1. When I was first diagnosed with CFS, I’m not even sure the genetic test existed for what I actually have.
2. It’s a massive fluke in many ways that I was ever accurately diagnosed with what I have. Most people don’t even get tested, let alone confirmed as having it.
3. I really think CFS is basically not a term for an actual specific condition, but a term for a lot of things that can happen from a number of chronic illnesses. Some of those illnesses are ones we already have names, diagnoses, and tests for. Other ones are ones we don’t. It is useful to have umbrella diagnoses like this because even when we have other diagnoses that are more accurate for specific people, the chances those people are all gonna get tested for exactly what they have are pretty slim, and people still need services and assistance in the meantime that can be accessed by having a firm diagnosis of something. And for people who have something that really doesn’t have a name or diagnosis for it yet at all, these umbrella terms are gonna be all you’ve got. And the way the system is set up, you need a name for what you have in order to get help.
I don’t like ME as a term because it really makes it sound like there’s one specific cause and there isn’t. Like, encephalomyelitis is a term with an actual meaning and it’s not there in everyone with CFS so using it isn’t universally accurate and doesn’t really help with credibility except sometimes on an individual level. (But on a group level it kind of takes away from credibility.)
I do think though – in my specific situation – that the fact I was never even tested for myasthenia gravis is kind of messed up. Like, I would’ve failed the test. Because MG is autoimmune and I have congenital myasthenic syndrome which is genetic (complicated but the MG and CMS are very similar in how they affect people, but different in origin). But that I was never tested for MG anywhere in the assessment process that eventually got me diagnosed with CFS seems very messed up given the symptoms I came in and told them about. (Which in retrospect, seeing my records, were incredibly specific and much more in line with myasthenia than CFS. I was just also dealing with some stuff on top of it that made it complicated, and also dealing with some serious assholes when it came to doctors.)
Like, I don’t blame anyone at all for not knowing what I had. I would not blame anyone at all if my diagnosis remained CFS for the rest of my life, I never discovered Mestinon, etc. The tests for what I actually had didn’t even exist when I was growing up or when I first sought help for “CFS”. (Which is one reason I think having diagnoses like CFS is very very important.) But people not even looking, that’s where I start having problems. And I found out at one point that there was a particular doctor who actively discouraged people from looking, threw up roadblocks, and actively sabotaged any conception that I could have any condition that wasn’t “all in my head”. And he did this without even doing any tests, it was just based on the idea that crazy people can’t also be sick (if only). I
It really threw me when I tested positive for CMS, because I’d been so used to the idea that stuff was all in my head that concrete proof actually really fucked with my head and messed with my entire sense of identity. It was easier in some ways to believe that either it wasn’t real or it would never be truly diagnosable even if real, that getting a firmer diagnosis shattered my entire worldview in a way I never expected.
Note on that last paragraph: I’m not not not saying that CFS is all in people’s heads. But given that I personally half-believed people saying things were in my head, a vaguer and broader diagnosis was much easier to cope with than something as ultra-specific as I ended up with, and I was not expecting it to have the impact it did when I got the diagnosis. Which was basically to make me so terrified I couldn’t even read about CMS for a long time after I was diagnosed, and couldn’t bring myself to think about it much, and really wanted to run away and hide in a way that was… totally unexpected. The way being told certain things about yourself affects your identity can be deep and disturbing and hit you in ways you never imagined. And I not only never expected a specific diagnosis of what I had, but never expected that getting a specific diagnosis would make me feel like I’d been shattered bone-deep.
So if you ever end up diagnosed with something specific, whether it’s CMS or lupus or something else really specific that replaces your CFS diagnosis – be aware that it can be emotionally grueling in ways you never expected, at least if you’ve internalized any of the crap most of us get told (and most of us do internalize at least some of it). Sometimes things will hit you in ways you never expected in a million years, and that’s what happened with this… I can’t remember how long it took me to come to terms with it even vaguely (and I haven’t completely yet), but I seem to remember an entire year of running away utterly terrified from even thinking about CMS much.
Yeah similarly here, “fibromyalgia” for me ended up being mitochondrial myopathy instead. Cfs/me/fibro all get used interchangeably and most doctors are just lazily dumping people in there specifically because they, despite the evidence proving it is as legit as a vaccines causing autism, treat it with graded exercise and cbt, in other words, hand them over to therapists instead.
And yeah, maybe it is in fact it’s own thing. Maybe it is another name for an existing thing. Maybe it is many different things. But if you are not confident you have been tested for EVERYTHING that could possibly cause your symptoms it is a good idea to check that. There isn’t really anything to lose and you might find a new treatment.
Yeah I’m really lucky that I hit the CFS diagnosis before graded exercise and CBT became the standard treatment, and most of what I was able to get out of it were things like wheelchairs and other medical equipment I sorely needed. By the time we found out about MG and CMS (I was diagnosed with MG at first because unless you’re diagnosed in early childhood they generally figure it’s MG unless prove otherwise), they’d switched me from “CFS” to “neuromuscular condition” and “chronic fatigue” was just listed as a symptom rather than an actual diagnosis, or something generic-sounding like that. But whatever it was and whenever it changed, the CFS label did allow me to say “Hey there’s something going on here that requires this and that equipment and accommodation even if we don’t know what the hell it is.”
It does seem weird to me though that the medical system is set up in a way where you need a way to write things down even if you know you don’t know what’s going on. That’s how I ended up with one of the most vague of vague classifiers I’ve ever gotten – “central nervous system disorder not otherwise specified”, which until there was a catatonia specifier for autism stood in my chart for autistic catatonia and a bunch of other stuff I had going on that didn’t have names yet for over a decade. You’d think they’d have a way of saying “Something’s going on, we don’t actually know what, but it’s obviously something, and it behaves like this, and it requires that, so do that regardless.” Without having to have any name at all. It’d be more honest. And I really think doctors need conscious practice at saying “I don’t know” in order to be good doctors.
The recent study “Being vs. Appearing Socially Uninterested: Challenging Assumptions about Social Motivation in Autism,” and the resulting New York Times article, got me thinking about the value we place on socializing. The article does a good job, I think, on telling non-autistic audiences that we are just as human as they are. That autistic people need to be met halfway just like anyone else. That our body language and communication and social interests displaying differently than others does not mean it is lesser.
So I don’t really have a bone to pick with that. Mostly, I just got to thinking about the immense value we place on socializing in the first place.
“I also think it’s weird in movies, when someone has amnesia, and they wake up in the hospital, a lot of times surrounded by friends and family, but when they open their eyes they go ‘WHO ARE YOU?!’ because that’s not how you act when you don’t recognize somebody. That’s very rude. It would be chaos out there if every time you saw someone you didn’t recognize you went ‘WHO ARE YOU?!’. I always try to be really polite in life, so if I had amnesia, you’d never know it! I’d wake up and they’d be like ‘Hi John, we’re so happy you’re awake’ and I’d just be like, ‘Oh, hey man… How’s it going? Oh hey dude, nice to see you again’ because that’s how you act when you can tell that someone recognizes you and you have no fucking clue who they are.”
— John Mulaney
Excellent point.
John Mulaney woke up with amnesia once and never told anyone because he was too worried about being rude
Time blindness is the weirdest aspect of executive dysfunction and so weird as an experience to live with.
It’s like you see the clock, the clock says 3pm, you look at the clock again and it’s 3:02, then 3:05, and then you look again and it’s 8pm and WHAT THE FUCK.
You don’t even need hyperfocus. But hyperfocus is like the Warp Speed:tm: version cause when that hits, it’s 3pm and then it’s the next day and why is the sun rising and when did i last eat and oh god i need to use the bathroom. And oh, also, you’re EXHAUSTED. The act of your brain tunnel visioning on something drains you (but that’s another topic).
Time blindness is…. having the general knowledge that today is Wednesday, and you need to do something on Thursday. Thursday is logically tomorrow, but the mysterious void of time is like ‘that’s like next week or something.’
It’s knowing you have to do something in three weeks on the 21st. And as the days creep closer, the 21st is stuck in a constant state of still being 3 weeks away, despite the fact it’s now tomorrow.
It’s wild. ADHD is literally living in a constant state of “There is Now. And there is Later.” and there’s no in between; no dates, no times; no hours, weeks, or months. It’s just Now and Later, and oh god why is is X o’clock already!?
So, hey, as you may or may not know, I am currently doing my MA dissertation on how expertise is incorporated into the autism discourse in the UK.
I have collected data on whose voices are currently being listened to, but now I would like the views of autistic adults to compare what we want with what the designated experts are pushing for.
So, for the next two weeks (until the end of July 2018), I’m running a Discord server for autistic adults from the UK* to discuss what we want, in terms of legislation and services, from the government and charities.
*So, basically, you have to be 16+ and have spent a significant of time living in the UK as an adult in the past decade.
If you meet these criteria and want a link to the Discord, send me a message. It can just say “Discord?” and I will send the link. Obvs, it can’t be an anon message, though.
Here is more detailed info on the server:
This server is for discussions of what UK autistic people would like to see in terms of legislation and services provided by the government and charities for autistic people. This discussion is part of a study on lay expertise and autism in the UK as part of an MA in Sociology and Social Research at Newcastle University being undertaken by L.C. Mawson, the creator of myautisticpov.com.
The server will run for two weeks and participants are free to join and leave the server as they please. If you would like to withdraw from the study completely, including removing your contributions to the discussion, you can contact Mawson at l.c.mawson@ncl.ac.uk to do so.
Your data will be anonymised, with only your nickname on this server being associated with your messages (right-click on your name on the user list on the right-hand side to change your nickname), not your real name.
This study is only looking at the experiences of autistic adults in the UK – this includes adults anywhere within the diagnostic process including those who are self-diagnosed and UK citizens who are currently living abroad – so please do not enter this server if you are not living in the UK, or are not an autistic adult (16+).
If you’re not eligible to participate, signal boosts would still be massively appreciated!
I’ve seen very little talk about hyper empathy so here’s some examples of it:
it can feel like the emotions of others are permeating a space and/or spilling into you causing high anxiety even when they’re not directed towards you/you’re not expected to react to them.
some people experience it by not being able to handle world tragedies or negative news reports because they feel a highly personal connection to the pain in those people with no way to help them.
this is something that a lot of autistic people deal with, so it makes me sad that I’ve seen basically no information about it in the communities on here
I’ve seen this before and it MESSES ME UP EVERY TIME because I was ALWAYS LOOKING FOR A WORD FOR THAT EXPERIENCE.
Like, after watching the Wikileaks video of the two journalists being killed, I could not leave my house for two days. I could barely get out of bed. It was the most depressed I have ever been.
On a less terrible note, one time when I was little, my mom said a lima bean on my plate looked like “a baby,” so I decided I had to save it, because it was a baby, and I kept it in a little jar for a month and I opened it again and it was moldy and I had to throw it away and I cried because I had failed to save the baby.
THE “BABY” THAT WAS, IN FACT, MERELY A SMALL LIMA BEAN
Isnt that being highly sensitive because i read once that autism and hsp are sometimes very similar except that hsp have usually a very high empathy or am i talking shit educate me
At least in the US, HSP (highly sensitive person) is not in the DSM. That doesn’t mean it can’t be a useful term/concept for some people (lord knows I have little to no respect for the DSM), but I think it’s interesting to note the way that some people who like to talk about HSP use it as a way to describe an experience without having to group themselves with “actually disabled” people.
in general, I think most people who fit the qualities of HSP would also fit under the label of autistic. It’s of course up to each individual to decide what words and communities are helpful to them, but I think those people could probably benefit from autistic self advocacy communities.
I would be especially suspicious of anyone who tried to describe a dichotomy between autistic people and HSP, especially if they describe the difference between the two being about empathy levels. Autistic people have vastly varying experiences with empathy.
I think we don’t talk about semiverbal communication enough in the autistic community. We all know nonverbal is not speaking in words or speaking only a VERY small amount of words with significant struggle and pain. Semiverbal, though, has a much broader definition, and we underestimate the value of using this word to describe the way we talk with our mouth parts.
Just because we can still sound out vowels and consonants in such a way to form a word does not mean we are communicating properly and effectively. So many times I’ve had people tell me I can speak “just fine” because they can hear what I am saying and then there ends up a misunderstanding of some sort because they did not understand that I was not speaking just “fine”.
Semiverbal could mean…
Speaking and expressing thoughts through scripts like movie quotes, commercial jingles, bits of songs, and things you hear in your everyday life.
Speaking a full sentence but replacing words with certain sounds or bodily motions so that there are pauses in the sentence where you interject the replacement.
Speaking words out of order consistently so that the correct meaning can still be interpreted, but only after taking a moment to think about it and correcting the order.
Shortening full sentences or phrases to a more shortened form such as “I love you” to “Love” or “I want water please.” to “Water”.
Talking coherently in some areas of speech and then other parts it turning out garbled or incorrect.
Sentences in your head not matching up with the words that come out of your mouth so that people misinterpret what you mean (this is a big issue for me personally, and I often have to get people to say back to me what I say so I can catch any mistakes because I don’t realize that they happen when the words come out of my mouth).
Starting out saying something and then forgetting a word so you have to start the sentence over and rework it to fit in a similar word so your sentence still makes sense. Saying something but one word was missing so you have to say it again with the word inserted.
Thinking the right word in your head, but only wrong words coming out of your mouth.
Making up words to mean things even if you know the correct word for what you mean because the made-up word sounds more right to you (this doesn’t count mash-up words, just words that are completely made up).
I really believe if people understood the multiple ways someone can be semiverbal we may be able to avoid a lot more misunderstandings and frustrations when autistics speak and recognize even if we can talk, we are still struggling to communicate.
I think we should use the word semiverbal more because it doesn’t just mean can speak, but only a little bit, it encompasses a lot of types of difficulties autistics have when speaking.
Did you know there is a strong correlation showing people who have ASD and/or ADHD being more likely to develop PTSD after trauma than neurotypical people?
The theory is that since our brains are more sensitive to stimuli that trauma impacts us more profoundly.
It’s still just a theory but anecdotal evidence seems to support it. It also supports the theory that PTSD in people with ADHD (ASD wasn’t mentioned but it’s likely the same) is exponentially more debilitating and they are more likely to be disabled by it than neurotypical people.
So If you’re struggling more than you think you should be? Or you think that what happened to you wasn’t traumatic enough to have caused your PTSD? There’s a reason you’re struggling that much and you aren’t alone, and it was traumatic enough. You aren’t weak or pathetic. Your brain works differently than other people’s, that’s all.
❤
There have been a few requests for sources so here are a few I’ve come across. A mixture of scholarly/academic papers and more casual language articles that provide similar information as those papers. Also included an interesting paper I stumbled on that shows a correlation between ADHD and Traumatic Brain Injuries.
Articles and Papers claiming risks of PTSD is higher in individuals with ADHD
– Emerald Insight (Scholarly Journal) *AN This is a slightly different subject as it compares a subgroup of ASD individuals to the larger ASD community but I thought it was important to include.
Articles and Papers claiming severity of symptoms are greater with comorbid ADHD and PTSD
Please let me know if any of the links contain harmful language or ideologies. I’ve read some in full but not all and even the ones I did are pretty dense so I may have missed something.
I know that there are autistic people who cannot, presently, communicate in a way that we know how to understand well.
I have never and will never say that autism isn’t a disability or that no one can be profoundly disabled by autism. Never. I do not know who you think I am, but I am not one of those people. A perusal of my blog on the topics of autism or disability would’ve told you that. I consider myself disabled by autism, and most of the autistic people I know do.
I know that there are completely non-speaking people. Many of them are able to use other methods of communication, like AAC devices, letter boards, ASL, or sounds and gestures. Some are not.
I know that there are autistic people who we have not found an effective way to communicate with yet.
The key word there is “yet.” When I say “we can do better for non-verbal autistic people,” what I mean is that I consider us generally–the advocacy world, the research world–to be morally bound to keep looking for communication methods that could help those people and keep trying to understand what their specific obstacles are and how to work with them.
“Some people just can’t communicate” doesn’t cut it. We have not even come close to a situation in which all non-speaking people have access to AAC if they need it (about half of non-speaking adults do not), and in which most researchers and clinicians take seriously the capacity of many non-speaking/non-verbal people to think and communicate if their specific challenges and needs can be understood and met, or autistic-reported issues that may impact communication ability like movement disorders, exposure anxiety, and auditory processing disorder. Though oral motor apraxia is one thing that is starting to be taken seriously as a common barrier to speech in autistic people.
It’s not that you personally just aren’t trying hard enough! But when people close to a non-speaking person have already decided, or been told and believed, “this person does not communicate,” when this is a pervasive prejudice about non-speaking and non-verbal people, that puts you at risk of not seeing genuine attempts at communication as communication.
“Totally non-vocal” does not mean non-communicative.
I don’t know if you know, but every year for the past couple of years now, a tweet chat called #AutINSAR (#AutIMFAR in 2017) has been held during INSAR, which is the biggest annual conference on current autism research, to put autistic people directly in touch with researchers to talk about research priorities and goals. And something that always tops the list of priorities that autistic people wish research would pursue is better and more available AAC, and how best to enable people with the most intense communication challenges.
Instead of continuing to throw millions and millions of dollars at trying to make mice autistic.
That is what I mean when I say “We can do better for non-verbal autistic people.”
Not that it is going to be easy or magical or somehow we will be able to turn every non-speaking person into someone who can communicate conventionally and articulately.
But we can do better than writing off non-verbal people as “just can’t communicate,” and we need to.
Wow, anon is narrow minded and ableist as hell. They need to listen to more autistic people.
“When I say “we can do better for non-verbal autistic people,” what I mean is that I consider us generally–the advocacy world, the research world–to be morally bound to keep looking for communication methods that could help those people and keep trying to understand what their specific obstacles are and how to work with them.”
“Some people just can’t communicate” doesn’t cut it"
The thing is that autism is a HUGE and nonspecific thing. Within that large umbrella, we have people ranging from some of the most “successful” in history in their area of interest, to people who struggle so hard with the basics of life that they don’t have the spoons left over for much else.
For many of us, autism isn’t so much the disability but the explanation for why specific issues are happening. Autism is a complex thing. It gives me a lively, quick brain that makes leaps other people don’t seem to make very well… and makes it a lot harder for me to deal with things that other people deal with automatically. Autism isn’t the “problem”… sensory integration is, executive function is, sleep disorder, difficulty with social interaction when I’m tired, anxiety… We treat the problems, but I would not trade the way I think for ANYTHING to be “normal”. I don’t want normal, I just want to get enough sleep and not feel like I’m going to jump out of my skin.
And I have a kid who struggles moment to moment to communicate due to a specific chromosome issue that also has a ton of factors in common with autism, and the autistic part isn’t the problem, it’s the fact that her mitochondria are iffy at best and not working efficiently and that impacts her language severely, but we’re able to actually treat it, so she has about 500x the vocabulary we expected based on research available 13 years ago when she was diagnosed. (I do not exaggerate here, she was expected to have 5-15 words, and has thousands, lack of language is characteristic of her syndrome, until we figured out that her syndrome was causing a CoQ10 deficiency and treated that.)
We’re not trying to make her not-autistic, we’re trying to ease the parts that make her frustrated, like not being able to say what she wants to say. We’ve used sign, AAC on an IPAD, speech, picture exchange, object exchange, echolalia. I said when she was a baby that I would learn semaphore if that’s what it took to help her communicate. When it comes down to it we can always devolve to choice hands (Do you want X *hold out right hand* or something else *hold out left hand*).
We can work with the other issues that can come up with personal care. We can work with making sure her clothes don’t hurt (It’s helpful having a mom with sensory issues, I don’t get her anything that feels “bad” to me) and find her alternative strategies to head banging, just as I look for alternative strategies for me to sticking ear plugs in and never leaving the house.
I know a number of people who just don’t use speech much. But MOST can learn to communicate on some level, with the right tools. I know a child who was COMPLETELY nonverbal, and they tried a method that proved that not only was she capable of communication, but that she already knew how to read, that she thought books were treasures, and a host of other things that they simply hadn’t managed to access yet until they hit on a method that allowed her to successfully navigate.
I am such an evangelist for IPads for autistic kids. There’s a huge variety of communication software out there, and using it actually helped bridge the gap to speech for my own kid, but it can be a complete communication solution with the right professional support. It can also be a bridge for kids to have more control over their lives, the shows they watch, the music they listen to. They’re literally designed to be easy enough for a baby to use, and to watch a kid who has struggled with literally everything in her life quickly navigate through to specific shows, specific points in a show, back to communication software, into a game program, etc… It’s an immediately rewarding, very specific thing that is THEIRS in a world which is usually not set up for them.
So I’m actually going to push back on the proposition that autism is a “huge and non-specific” thing. I really don’t think that it is. Autism has diagnostic criteria (imperfect as I think they are), and it has widely recognized commonalities in people across the spectrum. Research is starting to bear out what autistic people have been reporting for a long time in regards to core processing differences involved in autism.
And also on the implied dichotomy between people who are successful in pursuing their interests and people who really struggle with the basics of life.
Many of us are BOTH of those things. We may be both very successful at our areas of interest, and significantly disabled.
I’ve made this point before, but…Einstein was reputed to occasionally forget to wear pants to class. Scientist Henry Cavendish was so beset by what I’d guess was probably severe exposure anxiety that he had a private staircase built in his house so he’d never have to encounter another person coming up or down the stairs. If he hadn’t just happened to come from an incredibly wealthy family, he would have led a much more constrained life. (This story is in Steve Silberman’s book NeuroTribes.)
Mozart literally died in a gutter, in his 30′s.
Anthony Hopkins is widely recognized as one of the most brilliant actors of our time, and he has struggled hugely with alcoholism (more common than widely acknowledged in the autistic community). Daryl Hannah had to semi-retire from acting and withdraw from Hollywood suffering from autistic burnout several years ago.
Are there autistic people who likely will never be conventionally successful in the ways our society defines successful because of their disabilities? Yes.
Places like Creative Growth Art Center are not widespread and obviously not a panacea for complex communication needs, but can provide critical support for the talents of people who would be called severely disabled in many contexts.
Autism for me is both the disability, and the explanation for a lot of things in my life. I cannot say “autism isn’t the problem, sensory processing is” because sensory processing differences are intrinsic to autism for me. (And also I don’t believe in playing moral whack-a-mole like that. People with major sensory processing differences deserve to not have those treated as the enemy, either.) Autism isn’t just the way I think; it is all of the ways I interface with the world, and many of those ways disable me, but many of them are also very contextually dependent. If someone tried to say “we don’t want to make you non-autistic, we just want to treat your sensory processing difficulties,” that…doesn’t work. Like I’d find that really disingenuous, because those are not separable things for me.
I’m a professional theater artist; I’m kind of actually successful in my career! I’m also sick because I interacted with people too much on Saturday. Both of those things are autism. We aren’t people who have interests that can make us successful or people with substantive disabilities without there being any real connection between those things; we are very often both, with the very same traits having the potential to be enabling or disabling depending on context and the demands of our environment.
![[speech bubble shaped like a cloud, drawn in rainbowy lines]](https://kpagination.files.wordpress.com/2018/08/speech-bubble-1417456857ml5.jpg?w=300&h=294)
Urocyon's Jaunts 2.0 
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