Autism, Representation, Success – Ada Hoffmann
I don’t remember when I started following Ada Hoffman’s blog. I know it was after my son was diagnosed with Asperger’s Syndrome. I believe I had come across some of her reviews of books & stories with autistic characters. Through Ada’s blog, I found a number of other autistic bloggers, and I’ve come away with a great deal to think about. My thanks to her for taking the time to write this guest post.
Tomorrow, we’ll wrap up the week with a post from Katie about gender in genre.
I get a lot of praise, from certain corners, for being a “successful” autistic person. It’s weird for me. I don’t think of myself as an overachiever – frankly, most days I look at myself and only see the things I haven’t done yet. But it is increasingly clear that overachieving is what I do.
I’m only recently starting to unpack how this relates to the way I read and write autism.
There is a curious duality to the way we think of autism and success. It’s always one extreme or the other. “Cure” stories, which show up all over speculative fiction, typify this in the worst way. Here’s a line from a fictional doctor in Nancy Fulda’s awful short story “Movement”:
Without treatment, some children like Hannah develop into extraordinary individuals. They become famous, change the world, learn to integrate their abilities into the structures of society. But only a very few are that lucky. The others never learn to make friends, hold a job, or live outside of institutions.
Be amazing, say the doctors. If you’re not amazing all the time, if you slip up and let yourself look or act disabled, if you have a problem that inconveniences other people in any way – you’ll be one of them. The people with no future. The people who are only ever a burden to others.
This is ableist talk, of course. Horrifically so. “Low-functioning” autistic people get the ableism thrown directly at them, like there’s no possibility they could ever be anything else. “High-functioning” autistic people get it brandished at us from a distance. It’s the stick that’s used to drive us forward. Stop moving, and this is what we will think of you; this is what we will say about you; this is what you will be.
And “forward”, of course, means whatever the doctors want it to mean. It has a lot more to do with pretending to be NT [neurotypical] than it does with real achievement.
This is why I sometimes respond well to stories that don’t show autistic people at our best.
Sheldon from “The Big Bang Theory”, for instance, is a horrible character. He is one absurd stereotype piled on another. From an “objective” standpoint – from the standpoint of NTs evaluating the show in terms of things they can understand, like stereotypes and “depth”, and “realism”, and whether or not the characters are “sympathetic” – there is nothing good to say about him.
But Sheldon doesn’t have to pretend to be NT.
Sheldon is totally unapologetic about who he is. He follows his routines, pursues his own interests, and gives no fucks at all about whether his friends are annoyed. He behaves like this constantly. And the world doesn’t end. No matter how outrageous Sheldon is or how much his friends profess to hate him, at the end of the day, he’s still a part of the group. He has friends. He has a job doing something he loves and is good at. He has money. He has, in later seasons, an autistic girlfriend. He is utterly unsympathetic to the NT characters. Yet he has all the things that doctors tell us we will never have, unless we work constantly, and without fail, at being sympathetic.
To a certain kind of autistic viewer, this is powerful.
Of course, as authors, we can and should do better than Sheldon. We can create much more nuanced portrayals. We can do much more with intersectionality and with the diversity that exists within autism. We can do much more to show that there are midpoints on the spectrum of sucess: that there are, for example, autistic people who do ordinary jobs instead of being a famous physicist, or who rely on support people to a degree while retaining their autonomy, or who live on disability cheques because the job market hates them, but find fulfillment in other activities. That all of this is okay, too. That our worth as humans is not dependent on anyone’s definition of success.
We also need to remember that people who are labeled “high-functioning”, and who have this neurotic relationship with our own success, are not the only autistic people whose feelings matter. That the other end of the spectrum matters too, and that there is not really much of a divide between us at all, except in the way we are treated.
My instinct is an author is to show people like me being happy, and good, and successful – and never too weird, because that would be a stereotype, and never too unsympathetic. And, let’s be fair. I like it when I see autistic people portrayed this way. It makes me feel happy and confident. It’s a valuable thing, and I want to see more of it.
But if this kind of portrayal is where we stop, we are doing ourselves an incredible disservice.
Maybe we, as autistic people, need to be shown warts and all sometimes. Maybe what we need most desperately to see is that we can be visibly disabled, and unsuccessful, and fail to meet NT expectations in all kinds of ways, and be treated with all sorts of horrible ableism, and still be human. And still be lovable and worth something, even if no one else sees it.
I’m not sure I entirely know how to do this. Meda Kahn does it very powerfully with a non-speaking protagonist in her story “Difference of Opinion”. I’m not sure if anyone else has ever done it quite that way. I act like some sort of big autism expert online, and that’s such a lie. There is a ton of this I still haven’t figured out, and I’m still looking and learning, like anyone.
Ada Hoffmann is a Canadian author with Asperger syndrome who blogs about autism in speculative fiction.
February 14, 2014 @ 9:57 am
Thank you very much for this post. I’m a borderline autistic person with a son “on the spectrum,” as they say. You’ve given me much to think about.
February 14, 2014 @ 10:16 am
Thank you! Just one question (and I’m sorry if I missed it somewhere in the essay) – what does “NT” mean?
February 14, 2014 @ 10:24 am
You didn’t miss it, because I was looking for the definition for NT as well in the context and couldn’t find it. My Google-fu lead me to this Wikipedia page (http://en.wikipedia.org/wiki/Neurotypical) which states that NT stands for “neurotypical” and it’s the equivalent of calling someone a Muggle or defining someone as being “of average height” compared to a little person.
Jim C. Hines
February 14, 2014 @ 10:27 am
Added the word to that paragraph, in brackets.
February 14, 2014 @ 10:29 am
I think the thing I love about this essay is that even though Hoffman has a lot of experience with her subject matter, she knows that she can still learn more and is eager to find out more. That is a difference that makes all the difference in the world, I think. The more people who aren’t afraid to learn more about the world from other people, the better.
February 14, 2014 @ 10:47 am
Ah, thanks! My google-fu was weak and came up with lots of stuff (like Windows NT) that I was pretty sure was irrelevant.
February 14, 2014 @ 10:48 am
Thanks Jim. Off to read wikipedia for context, then back to re-read the essay with new-found knowledge. 🙂
February 14, 2014 @ 11:01 am
It definitely helped my understanding of the essay, and has added to my vocabulary!
February 14, 2014 @ 11:11 am
Hi, I’ve linked this post at Access Fandom. Thanks!
February 14, 2014 @ 11:41 am
I think autism is one of those things you either do right and do well (e.g. Elizabeth Moon’s The Speed of Dark, which was inspired – if my memory is correct – by her autistic (adopted?) son), or you do incredibly wrong. And when you do it wrong you hurt people, you reinforce stereotypes and you – if your podium is high enough – make it harder for those with autism to be seen as what they are, i.e. people. Actually, when I was in sixth form (that’s 16-18 education in the UK, alongside college), one of the few people I truly thought of as a friend was a guy a few years younger than me who had Asperger’s, and he was without a doubt one of the most pleasant people in that place, and he was passionate about art and music. I don’t think, in… the past eight years (gosh) I’ve really met anyone I’ve got on with so well.
I also think it’s important that “NT” people, to use the term in the post, do what they can when they see something problematic, or at least try to raise awareness. I recently read through Fantastic Four: Season One, a semi-recent graphic novel from Marvel, and in it Mister Fantastic had self-diagnosed himself with mild autism and was looking for a cure. How on Earth can anyone think that’s an acceptable thing to write? Autism isn’t something that can be cured, it’s… not really something wrong, is it? It’s a different way of looking at the world and interacting with it, and it’s things like that, which show a disregard and a lot of ignorance, that really gets me down.
I really don’t know where I’m going with this post. Just… I’m not diagnosed as autistic, I don’t think I am but hey, we’re all wrong about things, but I think this was an excellent thing to read and it does also kinda show that whilst something might be done wrong or tastelessly, good can come from it.
Kerry aka Trouble
February 14, 2014 @ 11:55 am
@Loerwyn – yes, Elizabeth’s son M- is adopted and autistic and now living in an apartment in the city while going to college.
Michelle Sagara is another writer who ‘gets’ ASD people – her elder son is also autistic. Her novels Silence and Touch have an autistic high school boy as one of the main secondary characters. He is neither perfect nor horrible and has friends who accept him just the way he is.
Tina Smith Gower
February 14, 2014 @ 12:58 pm
Thank you, Ada!!
When I saw this announced as a guest blog yesterday I was excited to see the post. I think this is one of my pet peeves when I read and come across a character with autism that could have been better thought out. I think of it as the Bill Gates effect–that we want to push a person into being extraordinary. We want the story of them “overcoming their disability.” And some people are, they really are, but my experience is with everyday people.
I started out as a school psychologist and I specialized in autism. I pursued a special certificate and even went beyond that and worked as an instructional aid one-on-on with children diagnosed with autism over the summers. This was all before my nephew was diagnosed, and my views changed again after that.
I think we want people to fit a certain mold and autism, like every single other thing in this world, does not fit a mold. There is no “typical” autism. The characters we read will never fulfill our need completely, because I’ve never been able to see two kids or adults with autism that present the “same” — Every case is treated as an individual case. I think it’s admitting that as a writer who has vast experience with autism, even having a family member with autism, I still will never do it justice. I won’t be able to pinpoint an experience 100%. Even if I had autism I still would not be able to do it, but I could represent one person. And if people wrote me about it either in agreement or disagreement, then I’d have to offer that caveat.
Full disclosure, I have written a story that features a character with autism. He actually has PDD-NOS (Pervasive Developmental Disorder–Non Specific), with Sensory Integration issues,. It won a contest called Writers of the Future Gold Award this last year. I did a lot of the things you listed above on purpose, because I also wanted the same things (a character that chooses to not be “cured”, whose autism is a strength and a weakness, ect).
Also if anyone can define ableism for me? I have seen it around and I’m not sure I grasp it. It sounds like something to avoid, so I’d like to know what traps not to fall into.
Thanks so much for this!!
Tina Smith/Tina Gower
(I apologize for any spelling/grammar/clarity issues. I’ve re-read this post several times, to give a good impression, but I’m dyslexic and so things will slip by)
February 14, 2014 @ 1:43 pm
One thing I notice here is how many of the people who “get” autism are people closely associated with autistic people – and this strikes me as odd. Where are the autistic authors and artists and writers who will of course “get” autism?
I would love to see more autistic people getting a voice of their own, instead of relying on NT family members to be their voice.
Its like people praising white authors for “getting” blackness in their writing…
February 14, 2014 @ 1:48 pm
Also, Tina, ableism is basically discrimination based on ability/disability. It encompasses things like calling things we dislike “stupid” or “retarded”, as well as accessibility issues for conferences that no one genuinely considered.
Basically, to understand ableism, understand the social model of disability:
Imagine you lived in a society where everyone has mantis shrimp eyes. Mantis shrimp eyes have sixteen different kinds of color receptors compared to our three – and we see millions of shades of colors.
Consider how we use color, texture, shape, contrast, etc in our society for signage to communicate important information. Then consider how a mantis-shrimp eyed society would use their expanded color palette.
Further imagine that you live in this society, but with your normal human eyes.
You would be effectively blind in that society, but able to see in ours.
This is disability. It is a mismatch between your capabilities and traits with the environment and context you’re in.
This analogy and model do not cover things like depression or anxiety since those are disorders which significantly impair your life despite any accommodations that can be made.
And further, consider how much our current society accomodates abled people. Chairs for those who can sit, stairs for those who can walk, lights for those who can see.
Tina Smith Gower
February 14, 2014 @ 2:19 pm
I think there is a large growing number of people with ASD (autism spectrum disorder) who are writing and have a voice. They are highly praised for the work that they’ve done in creating awareness and understanding.
Here’s a list I found: http://www.ont-autism.uoguelph.ca/books-by-ASD-authors.html
A lot of people on the spectrum don’t have verbal communication abilities and so if a close family member chose to become that voice then it is a sort of filter as you’ve pointed out. Most understand that filter exists (i’m sure some will deny it does using the whole “but I know *one* person therefore I know them *all* reasoning). I don’t know many who’re looking for praise for choosing to write about a topic they’ve done a lot of research and personal experience with, but I bet they’re hopeful they got it close to right.
I certainly would never discourage a person who has no family/work experience in the issue to chose to write a character with autism. I think it’s a lot like learning to write good characters, setting, plot–you’re going to need to look at every angle, maybe talk to actual people, and you may never get to 100% accuracy. Neither would a person who has autism. They will represent one person, but when we add them all up we get a more complete picture.
I guess I just would caution against the idea that we stifle people from wanting to try to include diverse characters, because I’d like to see more writers writing about more than what is comfortable. Some of the fun in writing fiction is that willingness to step into another person’s shoes.
I don’t know, I might be looking at this wrong, and maybe biased as a writer. Hopefully someone will offer more insight.
Tina Smith Gower
February 14, 2014 @ 2:33 pm
Ah, okay. Thank you so much for an explanation.
I guess I see this a lot in reviews. One that comes to mind is of a book I was considering reading where the main character was a quadriplegic, the writer of course was not. A lot of people were saying it had a lot of “ableism” in it. They pointed to the author’s picture that showed her standing. I thought it was odd that it was assumed she would have not researched the topic, that she would not have some experience with paralysis. I guess my real annoyance came from personal experience having had a temporarily paralysis myself. I’d had for someone to point to my picture and make an assumption on my life, and invalidate my experience.
However, I do see the flip side. And again it comes back to the understanding by authors that they will never get it 100% if they chose to write about any topic that will rely on a human experience of some kind. When people tell me I got it “right” on a topic I cringe a little inside, because I know deep, deep down that I’d never possibly capture the complexity in a hundred novels using that subject.
Is the issue when someone assumes they know something about a subject and yet can’t because they’ve not experienced themselves? Where does the issue of ableism become a problem in fiction? And when is it beyond a character choice for the author? Where is the line drawn (or is it a case by case based on a lot of different factors)?
Thank you again for taking the time to explain it, I’ve been looking it up online and still don’t think I grasp it.
February 14, 2014 @ 2:39 pm
Its a complicated issue, much like any -ism. The thing you have to remember is the power relationships. Its not very damaging for a bunch of Deaf people to have a laugh at the expense of Hearing people, because the power relationship is not in favor of the Deaf people.
The biggest areas of ableism that I see is when people act like accommodating a disability is just too expensive, too annoying, or just catering to special interests. Like Netflix and its partial implementation of subtitles/closed captioning, or hotels that won’t put in pool lifts, or places that won’t use ramps.
In the example you listed is that the book probably has a bunch of ableism in it, and it was hard for people to explain exactly what the issue was. I think they were incorrect, based on your retelling, to point to the picture as a reason why.
Anti-ableism is sort of a new issue, and the language to talk about it is still raw and developing.
Tina Smith Gower
February 14, 2014 @ 3:09 pm
okay, this makes sense–the term is still being defined. And my retelling is probably riddled with my misunderstanding as well, I just remember a few pointing to her picture as an example of how she was unqualified to write a paralyzed character. As a writer I had this chill effect, where I wondered if what they were really saying was nobody should write outside their experience, even in fiction. I thought that sounded really boring. It may very well have not have been a well thought out novel with ableism in it. Although I love it with a passion when I see a writer from a diverse background tackle an under-represented subject, I’m also happy when someone went the extra mile and learned a ton about a subject they had no investment/experience in.
That is just sad to have the attitude that something is too expensive to implement. I get the small business owner’s concerns, but also unfortunately, it’s a law (Americans with Disability Act). It has forced some people out of business, and it’s unfortunate, but so is being treated like an inconvenience for wanting/needing equal rights.
February 14, 2014 @ 5:53 pm
Thanks for writing this. It really brings to light how much we emphasize a certain kind of very narrowly defined “success”. Anything other than that is treated like something to be ashamed of, ridiculed, hidden away. Too many damaging, unobtainable “ideals” out there.
February 14, 2014 @ 5:56 pm
You made me cry. I will come back to this post and read all of this. My son is on the spectrum. I suggested on the blog that Jim include this (or at least mentioned how hard it has been to find this whole topic represented well).
I got called to school today. My son has a two day suspension. He was run into on the playground. Net-net, he clicked into a his zone, they decided to physically move him instead of letting him settle down and leaving him be, and he got a two day suspension.
So I’m crying. Finding a community is like that sometimes. Which I think was part of the point of these posts.
February 14, 2014 @ 5:58 pm
I’m sorry Dawn. That sounds really frustrating and unfortunate. Does he have an IEP that specifies teachers and school staff are to leave him alone when he’s in a meltdown?
Sounds like there was a substantial lack of training going on there.
Tina Smith Gower
February 14, 2014 @ 6:22 pm
Very frustrating, Dawn. Sending you a huge hug.
I’m not sure what state you live in, each law is different. In the state where I practiced (California) a child cannot be suspended if their IEP (Individualized Education Plan) was not taken into consideration when the child was disciplined/corrected. A lot of schools will sort of be fuzzy on parent’s rights.
Would you like help in pursuing a better outcome? Or a friendly ear?
Hang in there.
February 14, 2014 @ 6:45 pm
Ah, yes, the “super-crip” thing also applies to autistic people. You can’t just be a regular person with a boring desk job in a wheelchair, you have to be Inspirational and Extraordinary. Same thing with autism — you’re not allowed to be the mechanic who fixes cars 8 hours a day and then goes home and drinks beer and watches the game. Nope, you gotta Change The World.
I am as NT as possible, but thought that story “Movement” was horrifying and reductive. Glad to see it wasn’t me overthinking it, it really was terrible.
February 14, 2014 @ 7:42 pm
Hi trinolier, I actually quite agree. It’s wonderful when people are able to “get” a difference that isn’t theirs, and to write about it in an accurate and sensitive way. But it’s even more wonderful when the people who have the difference as their lived experience can find their own voices and be listened to on their own terms.
Also, there are some types of problems/fail that are characteristic of family members of autistic people when they try to write about autism. Many family members do “get” it, and are wonderful, but it’s possible for them to fail badly, too (just as it would be possible for the parent of, say, a gay teenager to say something awful and homophobic by accident).
Fortunately there are other autistic authors out there besides me. 🙂 They can be a little harder to find, particularly if you are sticking within one genre. In addition to the excellent list Tina found, I would recommend http://autisticbooks.livejournal.com/ (which is not affiliated with me). If you want a list specific to speculative fiction, I also have my Autistic Book List on my website: http://ada-hoffmann.com/autistic-book-list/ This lists a number of different types of speculative fiction books relevant to autism, but Tier 4 is specifically for books by openly autistic authors, and some of the books I have reviewed (in Tier 0) are by such authors as well.
February 14, 2014 @ 7:48 pm
One of the things that frustrates me most is when people write that type of story, and get showered with praise by other NTs, because “now we understand someone who is different from us!” Except they don’t. And then people who are actually autistic (or who have whatever other type of difference is displayed in the story) come in and say “Um, but it’s not actually like that, and we actually find this kind of portrayal rather insulting” and are responded to with “Okay sure, but it’s a good story and helps us understand difference anyway. Because the important thing is GIVING US FEELS!”
February 14, 2014 @ 8:05 pm
Most of the autistic characters I read in stories (or see on tv) don’t feel at all like me. They feel like a list of wikipedia symptoms and tropes and not actual people. I hate BBT and flipped out on a therapist who joked that I reminded her of Sheldon. When autistic people complain about this stuff (or anything involving autism, like the sham of an organization Autism $peaks, we’re generally told one of two things: either we’re not functional enough to know how hard it is to be around us, or we’re too functional to understand how hard it is to be around low-functioning autistics. Because we don’t have our own thoughts or feelings or inner-lives. Our whole existence is defined in how others relate to us, and often we’re just So Difficult To Be Around.
I’m so sick of reading autistic characters that are treated almost as non-humans. We are not some amorphous single being. We’re able to hold down jobs, we’re not. We’re super smart, we’re not. We have an easy time communicating, and we don’t. we fake being normal very well (which seems to be most programs and specialists’ idea of ‘success’) or we don’t fake normal very well. and we’re judged by that. by our “functioning” levels.
I’m having a really hard time handling work lately. I can intellectually do the job. I can’t handle the noise or the people. About half way through the day I want to run away, sell heating oil in Sandusky and never be heard from again.
it’s painful. So many expectations, so many preconceived notions. I work with someone who used to work with autistic kids, and even SHE has a horrible attitude toward the ones she worked with, and does the whole “well you must be so high functioning” thing to me. Her reasoning? “because you’ve never pooped or peed on me.” Amazingly, she is still alive and unharmed after saying these things, but one day i AM going to lose my cool and unload on her. It’s going to be like a semi-automatic clip of insults and I will do nothing to stop it because It. Is. Coming.
I say coworker. Technically I’m her supervisor. but i am SO terrible at asserting authority. And doing it in a polite way. “can you please shut the hell up about your past clients? No one wants to hear it, least of all me” is somehow not refined enough. *sigh* Sorry. I am rambling. I know it.
We’re not seen clearly. No one understands our limits or our gifts. Very few people try to communicate with us in OUR way, like with assistive technology, if we need it. We’re expected to meet the world on the world’s level, which is just setting us up for failure. I wish there was something I could say or do to deflate the tension and the building meltdown I’ve been feeling midway through work lately, but I don’t knwo what to do.
And if I need time on my own during the day, that’s a weakness. That means I’m not like everybody else, not pulling my own weight… and no one understands that sometimes I’m fine, and sometimes I’m a hot mess. There’s no explaining it. Not to my extended family, not to work… i just suffer in silence and go home “sick’ when I can’t take it any more and cry the whole car ride home.
February 14, 2014 @ 9:59 pm
There were some excellent things about Moon’s book, but I found the ending very upsetting, very able-ist. The person with autism is the one who needs to change, to be cured.
February 15, 2014 @ 12:23 am
You have no idea how disappointed I was that LiveJournal was blocked at work. Now I can read your reviews!
I am autistic myself, as well as hard of hearing. I’m currently(slowly!) working on some SF short stories featuring an autistic protagonist.
February 15, 2014 @ 8:36 am
And I would be very interested in seeing those short stories if/when you get them published.
February 15, 2014 @ 6:22 pm
Thank you for saying I got it right in this one case. Because a few of us do want to get some understanding (although we’ll never grok it) and I didn’t have any pals with autism who’d read the story for me to ask about it. And I wasn’t about to ask my autistic friends to read it just so I could discuss how icky it was!
You have given me happy feels. 🙂
February 15, 2014 @ 6:40 pm
Oh, Tammy, don’t go into retail (even heating oil), it’s only for the ridiculously-NT. I’m good at small talk and stuff like that and I’d go postal if I had to deal with customers.
It sounds like your workplace isn’t following the ADA. A few minutes by yourself is a “reasonable accomedation”. So is wearing earplugs. I personally can’t deal with fluorescent lights, so unscrewing the ones above my desk and bringing in a few cheap lamps does it.
That woman you work with deserves the insults, but it would look bad for you. Can you get an NT friend to write out the polite versions of what you should say and then you can recite them? Over and over till she shuts the hell up? I hope you can take comfort in the fact that the super-NT response to “hey, at least you never pooped on me” would be a swift uppercut to the jaw or slap in the face. That’s just something you shouldn’t say to anyone. Keep a log of her stupid comments as evidence for her annual review, particularly since you’re the supervisor. So unprofessional of her, creating a hostile work environment and all that other HR stuff.
February 17, 2014 @ 10:31 pm
I agree it was upsetting, but I didn’t find it able-ist. The guy with autism who took the cure basically *lost himself* which was tragic. He didn’t love the people he loved anymore, he was disconnected from almost everything that he thought was important — all he had left was a career in space. It wasn’t a happy ending, and I don’t think it was meant to be.
In my family there are several people with various handicaps, and we talk about what it means to be cured. As a parent, it breaks my heart to see the hardships in front of kids, but my wish for a “cure” is for a magical one that preserves everything I love about them, things that are inescapably wound up in their differences. I’m really wishing for a cure for everyone else.
February 17, 2014 @ 11:21 pm
Honestly, this woman has used up all my spoons. I’m not even sure how to broach it with my boss. I may flip out or unload on my boss if I try to bring it up. My boss doesn’t know I’m autistic (Seriously, I sit in a stationary chair on only two legs so I can rock all day, if she hasn’t figured it out, it’s a lack of observational skills at this point) and I am not sure I am ready to announce it, you know?
I make myself exhausted, depressed, emotional and overwraught playing normal for eight hours a day in the real world. It’s anger enducing to “be who you are’ and have people treat you like a freak, or be honest with people and have them slap you with platitudes about how you function so well, or you are not like so and so’s cousin’s wife’s brother, who… and then they they insult other people with autism who can’t pass as well right in front of you….
there is absolutely no right or easy answer to being an adult autistic (or a kid autistic for that matter)… if you can hold down a job (with difficulty–every single day I want to quit and run away and never come back)then you are successful and good and “cured” and people don’t understand if you need help, or have sensory issues, or can do something one day and not the next, etc. if you can’t do things, you’re either not trying enough or you’re “always going to be helpless and reliant on others” as if that was our only judgement of a person’s value on this planet–perceived independence and personal earning potential.
I’m frustrated. And I’m frustrated of people speaking for me. Someone up-thread says they don’t see it as ableist–no because they aren’t autistic. Has anyone asked autistics if they see it as ableist??? That basically rewriting my operating system to turn me into a mac instead of a PC, destroying all my programs, files, photos, wordprocessing documents and saved logins is NOT ableist?? You’re turning me into NOT me–you’re turning me into a PC like the rest of you because PCs are easier to deal with, you have programs that run on PC and well, that’s what everybody else has… and that’s OK?
I have problems. A lot of autistic people have a lot of problems. But a lot of those problems are due to society holding disabled people up to the standards of abled people. We have a “normal.” A scale that is zeroed out. That’s supposed to be “everybody,” but it’s not. It doesn’t include a miriad of disabilities, or social situations or issues. It’s basically the abled-white-dude gold standard, and if we can’t talk to a crowd of people for four hours without ill effect, or we can’t walk up a flight of steps, or we can’t make it through a school system that still believes in the lecture/test method of the 19th century, WE are broken. The system isn’t broken. The world wasn’t designed for only a small fragment of the population–it’s everyone else who is failing to meet the gold standard. I would rather not be held up to a standard I can meet, but one I can, and have opportunities to use my GIFTS, instead of pressured into conforming, looking like everyone else and soudning like everyone else because it makes everyone ELSE more comfortable. I want to be ME, and still be OK in the eyes of the world.
Do you want to “cure” deaf people? I think most people here think that people who cannot hear are “broken” or “defective” in some sort of way, and it’s better if they can hear, or read lips, or whatever. Not for their own sake (oh so they can have an easier time in the world) but so it’s easier for hearing people to “deal” with them. Most Deaf people are Deaf with a capital D. They have their own community, their own language and culture. They don’t think it’s benificial to be ripped away from everything they know and value because you can “fix” them and matriculate them into “normal” society.
BUT OH WAIT. NO ONE EVER ASKS THE COMMUNITY IN QUESTION WHAT THE COMMUNITY IN QUESTION WANTS OR NEEDS. Instead of speaking with us, everyone’s insistant abotu speaking OVER us, or FOR us. Autism Speaks, I am looking at you. They have no autistic people on their board. So it’s a bunch of rich white NT people deciding what is best for autistic people. This leads to autistic people NOT getting communicative devices they need because of the belief that giving them devices would reduce their insentive to talk, and since talking is the gold standard form of communication, it’s far better to have someone who CANT talk on the off chance taht some day they MAY rather than have someone who can COMMUNICATE their thoughts, ideas and needs NOW because omg they will never learn to talk later.
Every time you talk OVER a person with a disability and tell them you know what they need better than they do, you’re being ableist.
Here’s the catch with autism and a LOT of other disorders: either we are “too autistic” to know what is best for us, or we are “not autistic enough” to have a voice in what happens with less communicative autistics be cause WE DONT KNOW HOW BAD THEIR FAMILIES HAVE IT, DEALING WITH THEM. DON’T YOU KNOW YOU PEOPLE ARE SO DIFFICULT TO DEAL WITH?
You know what–I know if there were a pill you could take for a cure, some autistic people would take it. I would contemplate taking it. Because the world is *so hard* to navigate. and normal people are *so hard* to deal with, and so unintentionally cruel. I would like to take the pill and wake up as someone else. Someone the world found to be more acceptable. more intuative of other’s emotions. More pleasant to be around, etc. People would like me more. I’d be easier to deal with. Would I lose who I am? YES. Would I know that? YES. But I think… sometimes… I wouldn’t care. Not because of the way I was built, but because of the way the world treats me.
Do you think Frankenstein’s creature was built wrong? He was put together the way he was. You can argue a man should not be built from spare parts, but this man was. And he exists. And he looked like a monster. People feared him for the way he looked. Their treatment of him–his own creator’s treatment of him is why he turned out as he did. Do you ever think he thought… if I didn’t have these scars, if they didn’t know I was pieces of men and not a man, that they’d fear me? That they’d treat me different? He may have contemplated plastic surgery. But he was fine as he was. He had a good mind for reading and philosophy. He learned and created. But Frankenstein, himself, was the monster. he abandoned his creation, threw him away and treated him like an abomination. Then wondered why the creature was angry enough to tear apart his world.
That’s how I feel sometimes. Like… we’re treated like the Creature, then people wonder why we get mad? We’re not monsters, even those of us who kick and react, or bite… there’s a reason autistic people do those things. It’s the only form of communication they have sometimes when words fail them, or they have no words at all.
Then we think the creature should either not have been created (eugenics) or needs to be restrained, controlled, fixed, or have its ugly face hidden away.
Well, that got maudlin fast. Sorry.
February 18, 2014 @ 12:51 am
Excellent post, it and the comments have been enlightening and fascinating. I’m curious to how you would respond to the character Abed Nadir on Community. I have read an article written by an autistic person who claims to find the character to be “Someone who moves like you”. http://juststimming.wordpress.com/2012/06/04/someone-who-moves-like-you/
I love the show that is about mismatched, somewhat ridiculous characters going to a community college. It isn’t stated right out that Abed is autistic, has aspergers, or anything else along those lines. But a careful watcher will notice the signs. His friends accept him the way he is. He shows talent for movie making, and is given respect by his peers and teachers, not only for his quirks, but way of looking at life. He often is given the ‘life lesson monologue’ for the episode. I’m not autistic and I am not especially close to anyone that is (just the way it is right now, not a conscious act), but I like to think Abed is a step in the right direction on this issue.
February 18, 2014 @ 4:46 pm
I finally got back here and read all of this. It was very helpful. And thank you Trinioler and Tina for reaching out. I appreciate the thoughts. I *didn’t* mean to come here and vent! The blog just tapped a nerve. All of the poster’s feelings about expectations, and what it means to be successful and autistic. Just happened to hit me on a day when I was really thinking about those topics. Even my husband still hopes that my son will someday learn to be (?) normal, or is that pass for normal?
My own expectations are so much more jumbled. Be able to support himself when I’m not here. Be “OK”, whatever that means to him someday.
We are in California now, and what happened was definitely not OK per his plan. He should have been left alone. And he should *not* have been touched. There is a lack of training, even among staff that worked with us to design the plan. Friendly ears and help always welcome. 🙂
February 18, 2014 @ 5:18 pm
I think you have the right attitude – “normal” presupposes some kind of NT-operating brain, or at least pretending to be NT. This is damaging and exhausting for many autistic people.
What you can best hope for is that your son will happy and safe and healthy one day. And he will be. Autistic kids grow into autistic adults – and there are many of us who show that we can be successful.
Check out ASAN – their head and founder is Ari Ne’eman, a senior level official with the US State Department.
Tina Smith Gower
February 19, 2014 @ 5:18 pm
Tammy, It sounds like you have a very frustrating situation at work where there are a number of people who are not exactly empathetic to your situation. Autism and sensory issues aside, I don’t think it sounds like a pleasant work place to begin with.
I’m dyslexic with a nice little comorbid dose of sensory processing problems (hearing–can’t think if there’s background noise, touch–don’t enjoy it, sometimes can’t get enough of it, always needing to be in motion–especially when stressed) which is common only in about half of the cases of dyslexia. We overlap on the Venn diagram with some people on the autism spectrum in that one way.
I one hundred percent agree with your annoyance with the lady who used to work with children on the spectrum. She sounds extremely insensitive–as I’ve seen a lot of people do after working in the field for a long time. They start to get really insensitive to the problems of others and start to see cogs in a wheel. I for one extremely dislike the “Disorder” part of the definition of BOTH Autism Spectrum Disorder and Sensory Processing Disorder. Which in the language assumes something is wrong, something is wrong that needs to be fixed. It I DO agree it is a problem and it greatly creates a roadblock in society, I’m not saying people who have disorders don’t suffer, because they do–The word just leaves a really foul taste in my mouth and an equally aching feeling in my chest to hear or see it. In my mind I replace it with “difficulty” I know it’s not perfect, but I don’t think the other word is right either.
And as far as the ablism part. I’m not sure if my comments above were the ones you were speaking about. I didn’t mean to sound like I was brushing off seeing ablism in literature, but if that’s how my comments came across then I’m very sorry for that. Ablism is a new term and I’m still trying to figure out where it fits (as trinioler above was trying to explain to me, also that it’s still being defined). I do want to thank you for expressing your frustration, it’s truly an eyeopener to see how damaging casual comments people use every day can be. A lot of people suffer in silence, I’m sorry you’ve had to for so long.
February 19, 2014 @ 5:30 pm
It’s not a bad place to work. It’s just too noisy (sensory processing issues–it makes me tired and actually physically hurts) and this one employee. It’s a constant sort of… slap in the face. A mom came in and was talking to my boss and said that her son bit her, and she bit him back. I was just dumbfounded. Her son was obviously trying to express extreme frustration, and she bit him back. I honestly couldn’t even say anything. I have a lot of trouble speaking up in those circumstances cos anything I say is going to come out in a super-crappy tone of voice. I have a lot of trouble with that. I just do. Well, the whole talking to strangers in public without canned responses is really hard too.
it’s frustrating. You hear things like this every day. I think the whole part where non-autistic, or non-disabled people try to speak over disabled people is due to the warped view of Christian charity (I know this is way off point) where people less fortunate should feel lucky for what they get from the fortunate people. it doesn’t matter if it’s the help you need or want, or how you want to be treated–since you’re less fortunate, and you’re at their mercy, you should wear sack cloth, rub ashes into your face and prove to the world how unfortunate you are, and bow and grovel for any scrap you get. Asking people what they want and need just never crosses ome people’s minds. Because you should just take what you’re given and shut up, because you’re a charity case.
I mean, I’m still wobbling on whether to request an accommodation for fire drills. If I request one, then I need to disclose to the principle that I am ASD, which may change the way they treat me. It probably won’t be nicer. It’ll be more condescending, probably. Because people honestly have no idea how to treat people with disabilities or special needs, and still treat them like autonomous human beings who have different needs, but are still actual human beings.
It’s frustrating. I know people try, but I think the reason why people fail so easily with this and a lot of social justice issues is because they’re trying to be good, but they’ve never actually listened to the group in question to hear what they want or need, or how THEY want to be treated. I think “normal” or “majority” people need to spend more time talking to the parties in question and LISTENING, instead of pretending they know what autism is like because they’ve seen someone’s outer life where they have trouble talking or moving and just presume the person is “locked inside themselves” or something. Always presume competence. Even if they have no way to express it.
Ahhg sorry. Rant rant rant. I get on a thing and can’t get off.
Tina Smith Gower
February 19, 2014 @ 5:39 pm
No, you’re right. What happened was not okay and also you have rights as a parent who’s advocating for your son. California is the state I got my license in (for School Psychology and Counseling). If your son has an IEP or even a behavior plan and it was not followed then this is considered an illegal action on the part of the school.
And you have an extremely awesome attitude. Success comes in a lot of forms. Luckily, there is a nice list of growing successful people with ASD, even people who have no verbal skills. Like this girl who just blows me away: http://abcnews.go.com/Health/story?id=4311223 if anything, that NT people have no idea –none– what is going on. I bet she’d been written off various times in the past. I think for me, having a learning disability, it was a huge ego boost to see someone like me “make it” — not be “cured” but to find a way to emerge successful AND not be seen as “overcoming a disability” but that they made it work for them. Sort of like when someone hands you a squiggle on a page and you’ve got to create a picture around it.
We have a lot of ADHD/ADD in our family, and ten years ago it was a huge deal, now all sorts of CEOs and athletes are emerging who probably excel at what they do because they can hold more than one thought in their mind at one time. It’s not pleasant to have a learning or attention problem, but often times people don’t understand the flip side.
Anyway, that list is being created for ASD and it’s growing.
Tina Smith Gower
February 19, 2014 @ 6:40 pm
Such a simple concept to actually ask someone, yet we don’t. I wonder where this breakdown happens.
I grew up in a family with a lot of hodgepodge of issues. Dyslexia (from mild to extremely severe), ADHD/ADD, ASD, CP (Cerebral Palsy–wheelchair bound with a feeding tube), depression/anxiety, Sensory Processing–lots of things. All growing up disability was “normal” for me. I don’t have any idea how to describe it, but for the reactions my friends would get to some of my family members. They asked a lot of questions, which I think is better than staring or gossiping. To their horror, when I couldn’t answer I’d go ask the person in question (or parent if that person couldn’t answer). I think a lot of people are taught not to ask, that it’s considered rude. A member of my husband’s family wanted me to submit to a blood test before I got married to my now husband (so as to check to make sure that I didn’t have anything genetic that would be passed on to any of our potential children). And that’s probably rude to ask, but I do understand it came from not really understanding the issues. I wished they’d asked questions before coming to that embarrassing conclusion (I think it was ultimately more embarrassing for them after I explained that Cerebral Palsy is not genetic–which turned out was where the main concern was).
Overall, I think you’ve hit the nail on the head with the problem– I think there must be some sort of society barrier that’s making this issue worse by making it a fearful thing to simply ask, to make friends outside of what makes a person “comfortable.” Or at the very least, not to make a friend, but at least to gain a little understanding or maybe knowledge on the subject. As a parent, I want to explain to my kids when they see a child that has a very visible disability, but at the same times it sort of robs them of the opportunity to ask (if in a situation where it’s appropriate to do so).
A lady bit her son back? Wrong on so many levels, but you were probably right not to say anything.
(I’m also probably going to step back from this conversation a bit, so as not to come across as spammy. It’s just a subject I care a lot about and want to learn more).
February 19, 2014 @ 7:00 pm
At the same time, I think it needs to be asked respectfully, you know? A lot of people act like they’re entitled to information, or entitled to be educated. Which can get tedious when you’ve corrected or educated someone for the nine millionth time this week. You’re like OMG do a freaking google search. Or read these blogs of these ASD people who talk about their very own first hand experiences. Some of the people who run these blogs aren’t verbal. You wanna get an insight into someone with multiple disabilities, or what being non-verbal means, check that out, you know? I find myself saying the same things over over. On the internet. I am really terrible at explaining this stuff in public. like out loud. I think I come off as an asshole. I know I always come off as a know it all. It’s far easier for me to type than to verbalize. I don’t lose track of my thoughts or lose words, etc.
Sometimes just shutting up and listening when a group of disabled people talk is really informative too. The “actuallyautistic” tag on Tumblr is for autistic people. The “autism” tag is mainly taken up by family of autistic family members eithe rsaying how much they love their family member despite them being autistic, or whining about how harrrrrd it is to deal with an autistic family member. I avoid that tag like the plague. It’s like… need to feel bad about yourself and the burden you cause friends and family? Go read that sh-t. It will give you bad-feels for days.
But asking nicely, or lurking in autistic-friendly spaces is a great way to learn. Reading the blogs of people with particular disorders, etc. Just don’t DEMAND anything. We get very annoyed.
But people with said disability should always be on the board and actively involved in organizations meant to help people with said disability.
Unfortunately with ASD and other disabilities, “help” lies in trying to force the person to look/behave more normally. Which can literally drive you nuts. I tried so hard to “fake normal” for several years when I worked for the Army, and at the end, I had a nervous breakdown that lasted about a year. Faking normal takes a toll. I don’t like hanging out with strangers or going places I’ve never been, becuase swallowing down my panic, and remembering to talk like a normal human being and make or fake eye contact, etc. is difficult. Doable, but difficult. I feel like I am the longest acting gig of my life.
February 19, 2014 @ 8:25 pm
I hear that, Tammy. Most days I have about 2 spoons for myself. By a lot of people’s standards, you’re “more successful” than I am, since you do get out of the house every day for 8 hours and hold down a job. Which I can’t. I have a Big Day when I take a shower and put on clothes and go to the supermarket. OTOH, I’m good at parties and small talk and all that.
I’m kinda surprised your boss doesn’t know you’re autistic, simply because I’d think Rude Bitch would have told him/her. Because it sounds like discretion is not in her vocabulary. Like politeness isn’t. Would it be better (i.e. result in less condescention about what a “good” person you are at “overcoming”, blah blah) if you spoke of your sensory processing differences as opposed to flat-out autism? Since it seems your actual problem is that you work with, um… people who are not intellectually gifted and empathetic.
All I can say is wear earplugs. I have them with me at all times, because “it’s so loud I can’t hear myself think” is NOT a figure of speech.
Maybe the woman who bit back will bite your co-worker someday.
If you ever do tell the bitch off, it will be completely justified. Plenty of us NT folk are snotty with crappy tones of voice, so telling her to STFU is not an automatic sign that you’re “socially incompetent”. Sometimes people need to have things put bluntly, and she sounds like one of them.
But it’s great that someone not NT has your job, so I hope you can keep it.
February 19, 2014 @ 9:07 pm
I had like three spoons today. It was amazing. I keep earplugs in my desk and I put one in the ear on the side she sits on. It helps. She’s not there when the boss is there most of the time since she’s an evening person.
I’m “functional” insofar as I keep my world very tiny. I don’t go out after work, I don’t participate in group activities. I don’t go to “school stuff” like a proper supporter of sports and crap would.
there’re days when I can’t handle the noise and I go hide or use earplugs. and i kinda cry on the inside on the way home, then crash in bed and be miserable the rest of the night. Functional is relative. All my functioning goes into working, so there’s no socializing, there’s very little cleaning (lol)and getting stuff paid on time, in the mail, picking up prescriptions is tough, etc. Functioning is relative, and there’re tradeoffs. I can hold a job with difficulty and I want nothing more than to be a library cataloging troll who catalogs in a basement where no one bothers me. Or be able to write full-time, but I know the odds of that happening are slim, just due to the nature of the industry.
(though I am grateful I can do what I can do, even though it’s really hard a lot of the time)
February 21, 2014 @ 6:31 pm
Well, someday maybe you and me can sit around on comfy couches (surrounded by clutter) in a nice quiet place (hmmm… sounds like my living room) and we’ll just read quietly. Maybe read passages out loud to each other once an hour if we come across something good.
Ack, prescriptions, thanks for the reminder!
Jim C Hines series on Equity
March 1, 2014 @ 3:16 am
[…] Autism, Representation, Success – Ada Hoffmann […]
March 15, 2014 @ 12:46 pm
Thank you so much for this. My adult son is profoundly autistic, non-verbal, has intractable epilepsy, anxiety, PICA, and requires help and supervision for every moment of every day…so often he is defined by these words. I try to point out to people that he’s handsome, charming, and grew up, moved out to his own home–has no mortgage, pays no bills AND has servants. He’s very happy, and what’s a greater measure of success than that?
Invisible | Ada Hoffmann
April 15, 2014 @ 5:38 pm
[…] in February I did a guest post – “Autism, Representation, Success” on Jim C. Hines’ blog, as part of a guest post series on why representation in fiction […]