actuallydd

“R*tarded” is not used as medical terminology specifically because the word has become a slur.

Nobody in the field, except for very old people (people who’ve been working in the field since the 1970′s/80′s and have yet to update their terminology) uses it anymore. 

So don’t give me that “it’s a medical term” bullshit. It’s a slur and you’re using it as a way to ostracize and other dd/id individuals.

Stimming is not just a coping mechanism

I see this defense of stimming a lot:

  • It’s wrong to train autistic people not to stim
  • They use it to compensate for overload
  • Or to focus
  • Or to compensate for other problems
  • Or to express distress

All of this is true. But it also misses the point. Stimming isn’t just a coping mechanism. It’s much more than that. Stimming is a positive part of autistic experience, not an unfortunate-but-functionally-important thing we have to do.

Imagine if facial expressions and tones of voice were considered wrong, and someone defended them this way:

  • It is wrong to teach children to adopt a flat affect
  • Children need to be able to frown
  • Children need to be able to indicate through the tone of their voice that something is wrong
  • Children need to be able to cry. That’s a way of coping with pain and overload

All of those things are true. But if that’s all defenders of tone and facial expression said, it would be horribly misleading. Body language and tones are more than that, and they are good.

Stimming is like that too.

  • Stimming is not just necessary. It is also natural, and good
  • Flapping in response to a nice texture is not fundamentally different from smiling in response to the smell of a flower
  • Rocking in response to someone saying something offensive is not fundamentally different from frowning in response to a slur
  • It is ok for autistic people to have autistic body language

developmentally disabled people are rad and worthy of respect

developmentally disabled people who grunt, squawk, flap, scream, bite, rock, squeal, crawl and bark are rad and worthy of respect

developmentally disabled people who lash out at people who come near, who yell when touched, who say the same word over and over are rad and worthy of respect

developmentally disabled people who shit their pants, who wet themselves, who suck their thumb, who clap their hands happily are rad and worthy of respect

no matter how uncomfortable it is for you to acknowledge our existence, developmentally disabled people are rad and worthy of respect

honestly this concept of “you can achieve aaaanything if you try hard enough” is so damaging bc it allows NTs and abled people to get away w rly gross abusive shit on the grounds that we’re just not trying hard enough, usually regarding something small that isn’t even vital to our health or anything but just Needs to be done because it’s what society considers normal

even if we do eventually manage to accomplish the thing with ~enough effort~ what purpose does it serve… like congratulations, i used up a week’s worth of spoons on this utterly pointless thing i could have easily gone without doing just so i could look neurotypical enough, are you proud of yourself

"Autism is a spectrum"

Whenever I write posts about autism, someone will reblog with a comment along the lines of “you have to remember that autism is a spectrum, ranging from extreme cases to mild Aspergers.” Here is a recent example.

It’s true that autism is a spectrum, but it’s not a spectrum of severity from low functioning to very mild. Autism is much more complicated than that. 

There are a number of things that go into autism. It’s a combination of impairments in cognition, communication, sensory perception, and movement. These impairments combine in different ways. And “high functioning” and “low functioning” don’t accurately describe any of them.

All autistic people are disabled in significant ways, and it’s not always obvious how. There are a lot of stereotypes, and they’re misleading.

When Aspergers syndrome and autistic disorder where separate diagnoses, the primary difference was whether someone developed expressive language before or after the age of three. That doesn’t tell you anything important about their abilities. (Which is one reason they’ve been combined into Autism Spectrum Disorder into the DSM-V.)

One way stereotypes can be misleading: some nonspeaking autistic people have significantly better language comprehension than some autistic people who speak. (And you can’t tell from affect either: A student who spends all day rocking in a corner might be understanding significantly more than a student who spends all day sitting still at a desk.)

Autistic impairments can also change over time, or in times of stress.

Someone you think has “very mild Aspergers” may well have no ability to understand language when they’re upset. They may have severe auditory processing problems and be unable to watch TV without captions. They may be physically incapable of walking across a crowded room. They may have very little voluntary motion and be dependent on prompts in their environment. They might not be able to initiate interactions or independently tell you that they are injured or sick.

Not all autistic people do the thing I described in my post on noticing when repetition is communication. (And not all autistic repetition is for this reason). But it has nothing to do with severity. When an autistic person repeats the same thing over and over in a conversation with you, it’s very important to consider the possibility that they’re trying to communicate something but don’t currently have the words to get you to understand. This is true even if they live alone and five minutes ago they gave a complicated lecture on physics.

tl;dr Autism is a spectrum, but it’s not a simple severity spectrum.

People With Down Syndrome Disrupt Screening Conference (June 6, 2003)

On May 19th, a group of people with Down’s Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents Collage in London. This is the first time people with Down’s Syndrome have made such a protest and is a major new step in the debate about genetics, eugenics and the rights of disabled people.

As a result of the protest, the conference organisers allowed Anya Souza to speak from the platform. Ms Souza, who is a trustee of the Down Syndrome Association, told the doctors that she opposes Down’s Syndrome screening and that people with Down’s Syndrome are people not medical problems. Her speech was warmly applauded by the conference delegates

The protesters consisted of three people with Down’s Syndrome, another disabled person with learning disabilities and their families and supporters. They had written to the conference organisers in advance and asked to speak, but were refused by the main organiser, Professor Howard Cuckle. It is unacceptable that doctors discuss better ways of preventing people with Down’s Syndrome being born, whilst excluding their voices from the debate. This runs directly counter to one of the main demands of disabled people: ‘Nothing about us without us’.

The protesters expect that their action will persuade the conference organisers to ensure a full debate at next years conference with proper representation of disabled people with learning difficulties. This should be the start of a national debate on prenatal screening.

In her speech, entitled 'Everything you ever wanted to know about Down’s Syndrome… but never bothered to ask’, Anya Souza said: I can’t get rid of my Down’s Syndrome. But you can’t get rid of my happiness. You can’t get rid of the happiness I give others either. It’s doctors like you that want to test pregnant women and stop people like me being born. You can’t abort me now can you? You can’t kill me…sorry!

Together with my family and friends I have fought to prevent my separation from normal society. I have fought for my rights. I have the right to a job, to services when necessary, to a decent standard of living, to know about my medical problems, to speak my mind, to make choices about my friends, whether to have sex, and so on. To do this you have to be independent when you grow up and not get separated from society… I may have Down’s Syndrome, but I am a person first.

Kitty Gilbert, who also has Down’s Syndrome, said: ….. I enjoyed watching the conference although I was a bit scared of what the conference people were saying. I think screening pregnant mothers with Down’s Syndrome babies is wrong. They are wanting their offspring to be able to enjoy their world around them and have endless happiness. I for one gave my mum pride and joy and I will continue to do so. I think that we should be treated fairly and equally, not being getting rid off because there is so much more in life that we can do. We are what we are and ask our opinion.

— 

LDOnline

I remember when this happened.  Nobody expected that people with Down syndrome could even have an opinion on genetic screening, even though they’re more affected by it than most people.  When they weren’t allowed to speak the regular way, they barged in and made sure people listened.

A long, sad story about the attitudes that Autism Speaks propagates, and an encounter with a spokesperson "autism dad"

I’m still working on my post covering the Vancouver ASAN protest against the Autism Speaks walk, but here is the story of one of the “autism parents” we encountered. The interaction here was definitely the worst and most disheartening part of the day but I feel like it’s really important to talk about.

We were well into the morning, handing out flyers and pamphlets to the masses of families in “Team Aiden” and “Team Emily” shirts, answering questions and talking to anyone who stopped to look at our signage. A man and his adult son approached us and began chatting up our chapter leader, Alanna.

Marvin leaned down and quietly identified the man as the person who gave the fear/hope/cure speech on the stage prior to the walk. His motive was clear to Marvin and me from his hello— he was not there to listen. I was, though. I listened closely as I smiled and passed out flyers, and during breaks in the stream of people I watched the interaction between Alanna and the “autism dad” with growing distaste. Eventually I began taking notes.

Keep reading

I have access to speech at least 85% of the time, but that doesn’t mean that during those times I am as verbal as a person without autism. Here are some examples of having access to speech while having speech trouble:

I have access to automatic speech, but not conscious speech.

For example I might see a dog and say, “Puppy!”, but by the time I’ve gone through I want to pat the dog, to pat the dog you have to ask the owner, the owner is over there, I should say please, I want to say to the person over there “Can I pet your dog please?” I can’t figure out how to get the words to come out of my mouth.

I have access to prompted speech, but not unprompted speech.

For example, if you ask me what book I am reading, I might be able to tell you it's Bridge to Terabithia, and it’s good, but if I see you sitting across the room and want to tell you what I’m reading about I will not be able to initiate the conversation.

I have access to planned out speech, but not spontaneous speech.

I have to memorize what I’m going to say and how my mouth is going to move to say it, before I say it.

I have access to speech but it’s mentally exhausting. 

OR

I have access to speech but it’s physically exhausting.

OR

I have access to speech but it’s physically painful.

OR

I have access to speech but I have to attempt talking many times before the words actually come out of my mouth.

I have access to speech, but only scripted speech.

This can be because I don’t have access to new words, or because I don’t have time to create new words and log them and run them through filters (not even necessarily filters of “is this polite” but filters of “is this actually true”) while carrying on a conversation, or because other people’s words are more comfortable then my own.

Most of what I say is a patchwork quilt of scripts pulled out of the scrap bag of my brain and hemmed together, actually.

Scripted speech isn’t necessarily bad or noncommunicative, and there are different levels of scriptedness from “kneejerk response” (“How are you? Fine”) to “looking for scripts that fit what I’m trying to say and splicing them together”. (I sometimes create scripts in advance specially for specific conversations with specific people. That is definitely not noncommunicative.)

I have access to speech, but not the words I want to say.

“Make no because the thing is curtaining” I say, unable to do grammar entirely, hoping someone will turn off the light. When I looked for pictures of light in my brain, I found a picture of light filtering through curtains, and “make no” means “make not exist”. Communicative, but damn hard to understand. 

A side note: it is cruel to make someone in this state use proper grammar or polite phrasing before you acknowledge what they have said.

I have access to speech, but not communication.

This can contain some or none of things above, and it’s hard to talk well about. What I can say is:

-A lot of it was taught to me by therapy

-For a long time, and still now sometimes, people labled uncommunication as real communication and real communication as uncommunication

-Just because someone does things that look communicative that aren’t, doesn’t mean they don’t do things that are communicative, and doesn’t mean you shouldn’t try to figure out how they communicate, and listen.

"Attention seeking behaviors"

Autistic people and other people with cognitive disabilities are often interpreted as doing things for attention, whether or not that explanation is plausible.

For example:

  • Alice is autistic. She flaps her hands.
  • Hand flapping is part of Alice’s body language. She moves her hands to express a large range of thoughts and feelings, just like some people move their facial muscles to express a broad range of thoughts and feelings
  • Alice also sometimes flaps her hands to calm down when she is overloaded
  • Bernice is a behaviorist. She is distressed about the fact that Alice flaps her hands.
  • Whenever Alice flaps her hands, Bernice stares at her, and pays intense attention to the fact that she is flapping her hands
  • Bernice notices that every time Alice flaps her hands, Bernice pays attention to her
  • Bernice concludes that her attention is reinforcing Alice’s flapping behavior
  • Bernice concludes that Alice’s hand flapping is an attention-seeking behavior
  • Bernice puts Alice on a behavior plan based on ignoring her whenever she flaps her hands

Behaviorists and others make this mistake a lot. They very, very frequently assume that the fact that they are paying attention to something means that it is being done to get their attention. It doesn’t. It just means they’re paying attention.

Starting at someone whenever they do something doesn’t mean that they’re doing it because they like being stared at. It just means that you’re staring at them.

tl;dr Stop calling everything attention seeking behavior. The fact that you’re paying attention to something doesn’t mean that someone is doing it because they want your attention. Not everything a person who has a developmental disability does is about you.

Autistic Questions!!

1. What are your current special interests if any?

2. What have been some of your past special interests?

3. What is guaranteed to make you overload/shutdown?

4. What is guaranteed to make you happy stim?

5. What are some of your happy stims?

6. What are your favourite stims/things to stim with?

7. What are your favourite textures?

8. What are your favourite tastes?

9. What are your favourite sounds?

10. What are your favourite smells?

11. What are your favourite visuals/things to look at?

12. What are your favourite things about being autistic?

13. Is there anything you don’t like about being autistic?

14. When did you first figure out or learn you were autistic?

15. If you’re non verbal, what method of communication do you prefer?

On assumptions of ability.

Don’t tell me what I can’t do.

If I can’t do something, I will tell you.

Don’t tell me what I can do.

There are things that I can do with relative ease one day but struggle with immensely the next. My abilities fluctuate. This is true of all people, it is just more obvious in my case.

I know my limits.

Sometimes I push them because I’ve determined that the thing I am doing is worth the recovery time. This is okay. You don’t need to intervene or save me from myself.

Don’t make assumptions. Don’t make decisions on my behalf without my permission.

I make my own decisions. It may take me some more time to get there. I may ask you to phrase things more simply, or differently, or to offer only one option at a time, but I will decide for myself.

If I decide to defer to someone else’s decision, that is a decision in itself.

Please do respect that I know myself, my limits, and my abilities best. Please do trust me to tell you when I need help. Please do respect my decisions.

people always say autistic people think in black and white, but then they *teach* us in black and white. good girl, bad girl. good (normal) behavior, bad (abnormal) behavior. you have to be consistent with these kids

my therapist gave me a feelings chart and when I circled more than one told me to choose one feeling. in social skills group, they were always asking questions like, “is talking about airplanes expected or unexpected behavior?” and “it depends” was not the right answer- talking about airplanes is unexpected, inappropriate, abnormal, bad behavior (at least when you are one of Those Kids. when you like things too much you aren’t allowed to like things anymore)

here is your behavior chart, you either get a sticker or you don’t. here is your anger scale, you aren’t allowed to say you don’t know. we need an answer that fits into a graph because we are graphing your anger. here is a social story where everything is so simplified it resembles real life about as much as stick figures resemble people. here are your right and wrong answers and you play, move, think wrong

special educators are some of the most rigid people I’ve met. you have to follow the program. it has to fit on this chart. you have to be consistent with these kids

College Tips for ND Kids

So I’ve gotten some requests to make a rebloggable version of my college tips for ND people starting university/college. Basically, it’s a list of stuff that helped me when entering an unfamiliar place away from home and having to establish new routines. Feel free to reblog and add your own tips and tricks!

Here they are:

  • Familiarise yourself with a few of the landmarks you will definitely need to locate: the library, the student centre and the clinic. Spend time in those places between classes with a pair of headphones and a notebook so you can learn everything about them.

  • Go to the disability office ASAP and inquire about exam rooms for disabled people, and other accomodations you may need. Make sure you are clear with them. 

  • Talk to your teachers after class if that is something you are comfortable doing. Ask them to clarify homework or whatever else comes into your mind. This is another familiarising technique that is good to have. Becoming familiar with your teachers will put you in their good books. 

  • Keep a notebook of your schedule on hand at all times. Download the To Do Reminder or ToDoist apps for doing up your schedules.

  • Make sure you have shower shoes! 

  • Walk around, a lot! Just walk around and photograph places and take notes on them. Really get to know them. Colleges tend to have lots of secret quiet places students can escape to, and libraries often have soundproof study rooms. Learn these places. 

  • Use your student card! Keep it with you at all times. Often places near campus will give you student discounts if you show your card. This is really good for poor college students.

  • Join tutoring groups in your major or minor. You will get to know people in a scripted setting and that will make making friends much easier. 

  • Basically familiarise yourself with specific locations, and college course help areas, and keep your course schedule on hand so you always have your routine to look back on as a physical reminder that you are safe. 

  • Keep a pair of headphones and a small fidget in your bag at ALL times. A phone charger is a good thing to carry with you all the time as well. A hoodie is probably also a good idea during the colder months. Just keeping one in your backpack. Keep a change purse in your backpack and a set of pencils, pens, markers and erasers. Keep a recording device in there as well so you can record lectures.
Nonviolent Communication can hurt people

People who struggle interpersonally, who seem unhappy, or who get into a lot of conflicts are often advised to adopt the approach of Nonviolent Communication. 

This is often not a good idea. Nonviolent Communication is an approach based on refraining from seeming to judge others, and instead expressing everything in terms of your own feelings. For instance, instead of “Don’t be such an inconsiderate jerk about leaving your clothes around”, you’d say “When you leave your clothing around, I feel disrespected.”. That approach is useful in situations in which people basically want to treat each other well but have trouble doing so because they don’t understand one another’s needs and feelings. In every other type of situation, the ideology and methodology of Nonviolent Communication can make things much worse.

Nonviolent Communication can be particularly harmful to marginalized people or abuse survivors. It can also teach powerful people to abuse their power more than they had previously, and to feel good about doing so. Non-Violent Communication has strategies that can be helpful in some situations, but it also teaches a lot of anti-skills that can undermine the ability to survive and fight injustice and abuse.

For marginalized or abused people, being judgmental is a necessary survival skill. Sometimes it’s not enough to say “when you call me slurs, I feel humiliated” - particularly if the other person doesn’t care about hurting you or actually wants to hurt you. Sometimes you have to say “The word you called me is a slur. It’s not ok to call me slurs. Stop.” Or “If you call me that again, I’m leaving.” Sometimes you have to say to yourself “I’m ok, they’re mean.” All of those things are judgments, and it’s important to be judgmental in those ways.

You can’t protect yourself from people who mean you harm without judging them. Nonviolent Communication works when people are hurting each other by accident; it only works when everyone means well. It doesn’t have responses that work when people are hurting others on purpose or without caring about damage they do. Which, if you’re marginalized or abused, happens several times a day. NVC does not have a framework for acknowledging this or responding to it.

In order to protect yourself from people who mean you harm, you have to see yourself as having the right to judge that someone is hurting you. You also have to be able to unilaterally set boundaries, even when your boundaries are upsetting to other people. Nonviolent Communication culture can teach you that whenever others are upset with you, you’re doing something wrong and should change what you do in order to meet the needs of others better. That’s a major anti-skill. People need to be able to decide things for themselves even when others are upset.

Further, NVC places a dangerous degree of emphasis on using a very specific kind of language and tone. NVC culture often judges people less on the content of what they’re saying than how they are saying it. Abusers and cluelessly powerful people are usually much better at using NVC language than people who are actively being hurt. When you’re just messing with someone’s head or protecting your own right to mess with their head, it’s easy to phrase things correctly. When someone is abusing you and you’re trying to explain what’s wrong, and you’re actively terrified, it’s much, much harder to phrase things in I-statements that take an acceptable tone.

Further, there is *always* a way to take issue with the way someone phrased something. It’s really easy to make something that’s really about shutting someone up look like a concern about the way they’re using language, or advice on how to communicate better. Every group I’ve seen that valued this type of language highly ended up nitpicking the language of the least popular person in the group as a way of shutting them up. 

tl;dr Be careful with Nonviolent Communication. It has some merits, but it is not the complete solution to conflict or communication that it presents itself as. If you have certain common problems, NVC is dangerous.