As new cases of autism have exploded in recent years—some form of the condition affects about one in 110 children today—efforts have multiplied to understand and accommodate the condition in childhood. But children with autism will become adults with autism, some 500,000 of them in this decade alone. What then? Meet Donald Gray Triplett, 77, of Forest, Mississippi. He was the first person ever diagnosed with autism. And his long, happy, surprising life may hold some answers.This article was written 2010 and some questionable language terminology is used, but it is an interesting read despite that.
“As new cases of autism have exploded in recent years—some form of the condition affects about one in 110 children today—efforts have multiplied to understand and accommodate the condition in childhood. But children with autism will become adults with autism, some 500,000 of them in this decade alone. What then? Meet Donald Gray Triplett, 77, of Forest, Mississippi. He was the first person ever diagnosed with autism. And his long, happy, surprising life may hold some answers.”
Tag: actually autistic
Kelly Sue DeConnick Explores Gender Dynamics and Defiance on Bitch Planet
Paste: The way that the word “compliant” is used, and takes on these incredible sinister connotations throughout the first issue…when did you arrive on that?
DeConnick: Everyone who works in the medical field hates me for that choice, by the way. Apparently, non-compliant patients are nothing you want to cheer for. I don’t remember making that decision. This is a thing I see with my daughter. My daughter is a very spirited 4-year-old girl. And with my daughter more than with my son — when my son is, let’s say spirited, it tends to be, “Boys do that; that’s boys.” And it’s chuckled at, if not encouraged. And when my daughter has initiative or is disagreeable or has a different idea about how she wants to do things, she’s a pain in the ass. She’s a troublemaker. She needs to smile and act nice and not disrupt the system. And I want so badly to protect this[, this] thing about my daughter that I most treasure right now: Tallulah does not give a fuck if you like her. I am so proud of her for that. And I know that there are parents that that will horrify. Please understand that we have a saying in our home, that you don’t have to be nice, but you must be kind. And what we’re trying to emphasize is you don’t have to be compliant; you don’t have to just go along with the way of things.
I haven’t read Bitch Planet or Pretty Deadly yet, but I have to say I approve of the word usage of ‘complaint’ here. Many people, many of them disabled, many of them female or queer or people of colour, have the label ‘non-compliant’ attached to their files simply because they have opinions about their own medical or psychiatric care that do not mesh with those of their primary physician. This isn’t a benign thing – people’s accounts of their symptoms are dismissed, they are forced into courses of treatment or medications that are unsuitable for them, forced into institutions or even die through improper medical or psychiatric care, all because a physician decided their patient was too uppity and didn’t have a right to independently research their condition or make informed choices about what treatment was right for them. Given that disabled people, women, queer people and POC are more likely to be subjected to these forms of social control by medical practitioners, government agencies and law enforcement, the use of the word compliant rings true to many people who have been subject to the whims of these agencies in the course of their lifetime. Just my two cents, from a disabled autistic queer girl, for whom the world has been difficult, but not as horrific as it has been for some of my fellows.
more people need to see this
EXCEPT, what people need to realise is that ‘person-first’ is not the only way and that for certain people and certain groups, ‘identity-first’ language is preferred by many of their number, the d/Deaf/HoH and a/Autistic communities in particular. (neurowonderful has a good links post about identity-first language in the a/A community HERE.) If someone tells you they prefer identity-first language, RESPECT THIS. Don’t feel that it’s your place to tell them they’re wrong/not PC, explain to them that they ‘are not their illness/disability’ or that they’re ‘letting their illness/disability define them’, or ‘giving in to their illness/disability’.
Disability being seen as an exclusively ‘negative, dehumanising’ thing is incredibly problematic. A disability is a thing a disabled person/person with a disability has to live with. It impacts their day to day life, health and abilities. It does not make that person any less human than anyone else. You know what does that? Telling that person what they’re allowed to call themselves or identify as.
IT IS NOT YOUR DECISION. IT IS NOT YOUR CHOICE. IT’S THEIRS.
If you don’t know what form of language to use with someone, take your cues from them or ask them, ‘what do you prefer?’ if it’s important for your interaction.
And don’t use reclaimed words unless you’re entitled to use them. Someone with mobility issues calling themselves a cripple? Someone with mental health issues calling themselves crazy? They’re allowed to. You calling them or someone else that without permission or prior consent? Don’t.
as an autistic person, there is a huge difference between me acknowledging i’m not able to do something because of my disability, and other people assuming i’m not and trying to speak for me
the former is me accepting my limitations, the later is people limiting me
we autistic people can speak for ourselves, maybe not in the way allistic people would expect, but we can. all of us can. you just have to learn our way of doing so instead of forcing us to learn your ways and treat us as burdens if we can’t
Autism Two Ways: What You Can Expect Based on Your Functioning Label
low-functioning: people literally think you’re incapable of understanding the world or forming thoughts or opinions. They believe you throw “temper tantrums” for no reason, that you’re purposefully violent, that you’re incapable of love. They think they have the right to speak for you without making an effort to communicate on your level. They decide what your quality of life is like for you, and will urge you not to have live-saving surgery. From the moment you’re diagnosed, your doctors, your family, and the entire world will treat you like a horrible burden with absolutely no future to be had. Assuming they don’t just throw you off a bridge.
high-functioning: people think you don’t have “real” autism and should therefore have no problems. They will go out of their way to deny you services, declare for you what you’re capable of dealing with, and possibly even undiagnose you based on knowing you for all of ten minutes. They think you have no sense of humor, that you can’t understand sarcasm, that you’re always literal and that you’re a math genius who never utters the words “I love you.” They will deny your right to have any opinions on autism, because you’re not like their brother/sister/child/whatever. From the moment you’re diagnosed, expect therapy. Lots of therapy. And the constant creeping sensation that you’re failing everyone by not being more “normal” because hey, you’re high-functioning.
In other words, being autistic in an allistic world is like the laws of thermodynamics.
- you can’t win
- you can’t break even
- you can’t stop playing
(Okay, that simplifies the laws of thermodynamics like a lot, but the analogy still fits.)
In the end, what functioning levels come down to from an allistic point of view is the answer to the question: Can we successfully stuff them into a socially acceptable box after years of violently abusive therapy, or are they already a lost cause?
If box: high-functioning.
If no box: low-functioning.
This. I want to add (from personal experience) that there is a sort of “medium-functioning” category that you can sometimes get put in that isn’t really any better than the other two.
You still get spoken for and don’t get to have feelings or opinions, but you’re also blamed for your failures and denied accommodations because you succeeded at something once and they’re sick of you being a burden and want you to get better already. They know you will never get better and make no plans for you ever being independent, but they think of you as a person just enough to blame you for it. And you also don’t get to have opinions on Autism because you’re better than some people.
I think you get put in this box by not being able to be stuffed into the social acceptable box long term, but still be well trained enough to be vaguely presentable for short periods of time. Bonus points for not really being impaired enough to be an effective pity object, but knowing enough cute tricks to be an interesting conversation piece in dinner parties.
Yeah, that’s pretty much me. Marvin and I often joke about me being “moderately autistic” or “medium autistic”, because of how other people really don’t know which box to put me in.
On one hand, for three or four hours I can appear relatively non-disabled, and maybe even likeable and charming. On good days I can give presentations with my mouth parts. I can force some eye contact and smiles. On the other hand, people have seen me just flop down on the floor in autistic catatonia, flap my hands angrily at bad noises, and go completely non-verbal. On bad days people speak to Marvin instead of directly to me, assuming I can’t understand them.
You described existing in the limbo between being perceived as high-functioning and being perceived as low functioning very well.
giveaway!
we are: a household of three non-binary autistic folks, two of whom have bpd, one of whom is schizophrenic, all of whom struggle with anxiety/depression stuff with all the trimmings. we know brain weird, and we know how hard winter (and especially the holiday season) can be for people like us—cold dim days, noisy crowds everywhere, flashing lights, extra-busy retail jobs, dealing with relatives who don’t get it. we’ve been there, and we want to help ease the passage into the new year with nice things. that’s why we’re making self-care surprise kits to start 2015 off on a good note!
if you are: neurodivergent and/or mentally ill, especially if you’re those things and also trans and/or non-binary, reblog this post to enter our giveaway! (if you simply want to boost this post for your followers to see, please tag accordingly so we know.) be aware that if you win, you will need to give us a mailing address, so if it’s not okay to send a parcel to where you live/get your mail, we’d be happy to send it to a friend who can receive it for you!
self-care kits will include some or even all of the following:
- a LUSH gift card
- a bath & body works gift card
- a handmade beaded bracelet with an uplifting message
- a soft little plush friend you can keep in your pocket
- an expertly-crafted chain maille stim/fidget toy
- unscented candles (we know sometimes scents can be overwhelming)
- happy drawings that you can look at when you feel down
- LUSH products such as lotion, bath bombs, soaps, etc
- stickers
- cute bandaids
- a link to a little song written especially for the winners
- other surprises!
giveaway ends january 1, 2015, when we will select four winners at random out of those who have reblogged this post.
even when you feel alone, there are people out there who understand what you’re going through. your experiences are valid, your needs are important, you are believed, and you matter. ♥
(obligatory disclaimer: we are not associated with or endorsed by tumblr or any company in any official capacity, this is just giving presents to people we haven’t yet met. if you are under the legal age of majority where you live, please consult a guardian before giving out your personal information.)
they call themselves
full of hopethey hope some day
you will become humanwith help
with caring
with love
with proper training
they hope someday you will become
The Right Kind of Personyou already are.
you already arethey hope for all
the wrong things
You said in an answer to an ask a while ago that traditional therapy didn’t really work for you. If it’s not too personal: what did help you? Because you seem to have your shit together pretty well (of course, on the internet nobody knows who you really are, but I guess even as an A.I. in a basement you could technically develop depression? Maybe?)
It’s a complicated question to answer, Anon, in part because there’s not “what helped me” so much as “what helps me” — clinical depression, the kind not caused by situation or circumstance (but potentially triggered by it) is not something you cure. Which I don’t think you were implying, but I want to be clear that I didn’t have depression and fix it — I do have it, it’s a chronic condition, and what I have instead of therapy or medication are coping mechanisms. And if you can’t tell when I’m in a depressive episode, well, that’s because of those coping mechanisms.
Second caveat: if therapy helps, or if medication helps, use them. My personal distaste for therapy is not a disbelief in its ability to help people, just a disbelief in its ability to help me, derived from personal experience. The fact that I don’t go to therapy or take medication is more to do with my ability to manage without, because of the relative non-severity of my condition. They are not the optimum weapons for my personal battle. They may be the best for yours.
One of the major signs is my unwillingness to engage with new narratives or ones in which I have an emotional investment — ie, I won’t go to see new movies even if I was really excited about them, BECAUSE I was really excited about them, and I won’t watch new TV shows or even new episodes of shows I like. The emotional impact (even when it’s a good emotion) is too overwhelming, and I know that when I’ve reached a point where I can’t cope with my own emotions, I’m probably going to have a rough few weeks ahead.
I do this. I didn’t know anyone else did. Well, I guess I thought someone must, but I’ve never actually known someone who does it. I know it’s linked to my level of cope, but I didn’t know how anchored it was to my depression/anxiety and how much it was tied to my autism. It’s sort of in that muddly, murky intersectional space, I think.
You don’t have to like being disabled
This is what I think disability acceptance means:
- Facing what your abilities are and aren’t
- Accepting yourself as already having value
- Living your life now and doing things you care about.
- Not putting your life on hold waiting for a cure
But, some kinds of acceptance talk end up putting destructive kinds of pressure on people. And I think:
- It’s ok to like or dislike being disabled. It’s ok to like some aspects of your condition but not others
- It’s ok to want treatment and to be frustrated that it isn’t available
- It’s ok to pursue treatment that *is* available
- It’s ok to work hard to gain or keep certain physical or cognitive abilities, and to be happy or proud that you have them
- It’s ok to decide that some abilities aren’t worth keeping, and to be happy or proud about moving on from them
- All of those things are very personal choices, and no one’s business but your own
- None of them are betrayals of acceptance or other disabled people
The point of acceptance is to get past magical thinking.
It means seeing yourself as you actually are, without being consumed by either tragedy or the need to focus on overcoming disability. It means accepting where you are, and living now, without putting your life on hold waiting for a cure.
Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled.
(Names for each in captions)
Hello everyone! I’m doing a giveaway with all these cool stim products !!
These range from chewing toys to weighted clothing, each one for its own use, I will giving two of each out in this and each winner will get their pick in 3 – 4 items that are available until I run out!Deadline December 20th
Rules:
– Sorry this isn’t for neurotypical people 😦
– You must have some way for me to send this to you
– You must reblog this!!
– If I find out you’ve sent hate for any reason it’s a no noHave fun!
Really neat giveaway! Yay stim toys and helpful sensory things!
knitting in the dark 