for some reason i just don’t compute with social media. or with people on social media. i am either too blunt or too subtle. either way it seems that i end up hurting people or pushing their buttons in ways i never intended. it is discouraging. it makes me feel insecure and odd – even in the autistic community. there are unwritten rules everywhere – ‘do this’, ‘don’t do that’, ‘do this, but not that way’, ‘do that, and do it the right way’ – it is infuriating, confusing and depressing. it is also scary. of course i won’t agree with everybody i meet, and some wont agree with me. it is all those unwritten rules – ‘remember, you are with us now – have to do it the way we do it’. yes. i read the rules. ‘not those rules, the other rules’ – what other rules? ‘the rules we are not telling you about’. OK – so even in the autistic community there are rules that are hidden, unspoken. and i am somehow supposed know them through some sort of secret radio waves? my receiver isn’t pinging me, so it must be broken. and right now i feel very much alone and lonely. i wonder when my receiver will be repaired.
this is autism speaks – a hate group aimed at eradicating autistic people. this why you should not support them – ever. among other things – they promote murder/suicide of autistic people as their ‘final solution’.
the video you just watched is a parody of a commercial for autism speaks which i will not post here – you can google on you tube for it if you think you can stomach it.
autism speaks is actively working for, financing and promoting research into prenatal testing so autistic children can be eradicated before they are even born, like the testing that already exists for down’s syndrome.
“In fact, its symbol, the puzzle piece, was created as a symbol of its purpose; to find the missing pieces of genetic material to establish a connection with autism and genes. This sort of research is problematic because it is part of seeking a cure for autism and can be interpreted as an attempt at eugenics.” LINK
to autism speaks we are “a problem”, “an epidemic”, “a burden to society”, including our parents – especially our parents. we are “a disease”, “a disorder”, something to get rid of.
they can do this because to autism speaks we are not really human. just like jews were not really human to the nazis. their ‘cure’ for autism is genocide through eugenics.
this is why – in april – every year no autistic person will ever ‘light it up blue’ – because that blue piece of a puzzle is the symbol of those who wish to terminate, eradicate, exterminate – kill us.
i could go on – but instead i am going to leave you with a final quote and a few links.
“Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?”
You don’t need to pretend to pass as normal.
You don’t react to stress like I do. Fewer things stress you.
You are not as sensitive as I am.
You relate to language very differently from me.
You relate to emotions very differently from me.
I have Asperger’s. This definition is going extinct, I should say I’m Autistic. I am not severely Autistic, I pass as an NN/NT in most situations. There is something “wrong” with me, though. The doctor who made the medical evaluation of me for the Asperger’s diagnose expressed it “she seems friendly, but somewhat odd”. This is the first impression I give. I SEEM to be OK, but there is something off, and that makes people feel I’m lying, trying to hide something, deceitful, suspect.
And I am. I am trying to pass as normal because I have been told since the first time I entered an NN society, that there’s something wrong with me. Other kids wouldn’t play with me. My colleagues wouldn’t talk with me. I am not invited to coffee or lunch or birthday parties. People avoid me. Just because my Asperger’s shows. I don’t know how, and neither do they. No-one knows. They just know there’s something wrong.
You don’t need to deal with this. You feel “right”.
If you have ever been bullied, or worried about what kind of impression you make, think that that’s how it is for us, ALL THE TIME.
I don’t do stress. I can’t say I don’t do stress well because I don’t do it badly either. I don’t do it.
There are only two ways I react to stress. Either I become a raging ape or a ragdoll.
The connections between my brain and body stop functioning. My brain works, my body works, but they don’t co-operate. I get what is called selective mutism. I can’t talk. With a lot of effort, I can force myself stutter some words.
Other people react differently. Some cannot move their body at all. Some move but can’t control the movement.
Some NNs might have experienced something similar sometimes. I experience this all the time. The smallest amount of stress and I can’t trust my body anymore.
Another way to deal with the stress is to go into meltdown. No, we can’t control it. We can’t prevent it, we can’t stop it, it’s not a behavioral problem. It’s like having six or seven drill sergeants yelling at me, all different things. One tells me to stand up, the other to sit, the third to give him 20, go right, go left, hands up, hands down… now, now, NOW!
I scream out my frustration. I try to push off people, I try to give myself more room, more space, more air, fewer impulses, less stimulation, more quiet, more time to think, more time to choose, fewer choices… I start pushing, hitting, kicking, slapping everything close to me to get more space. I start throwing things to get people away from me.
I am very sensitive. You might call it oversensitive. That’s an understatement. The correct word is hypersensitive.
Now, if YOU were oversensitive, you would be an overreacting drama queen, because you are not neurologically as sensitive as I am.
You know Chinese water torture. A drop of water on your hand every second… at first it’s ridiculous. Why would anyone think that’s torture? It’s just a drop of water? You can barely feel it! At first. Then it doesn’t stop. It just keeps on dripping, drip, drip, drip, drop after drop, never ending. You get irritated. You can’t stop thinking about it. You can’t put it off your mind. You can’t ignore it. In a couple of minutes, the irritation turns into pain. It’s still just a drop of water. It doesn’t even cause a mark on your skin. No-one could tell you have been tortured. No-one would believe you.
That’s how it is for us all the time.
We feel everything. We hear everything. We smell everything. We see everything. We taste everything. Every single little thing, all the time. Most of us can’t turn off this. This is why we need the softest clothes, most comfortable materials, cuts, and sizes. This is why we need silence. This is why we are picky about our foods.
Also, it’s all senses, not just the five obvious ones. We are aware of senses you don’t even know exist. Things like balance or where things are related to our body, or self, or any other of the hundreds of senses we have.
You see… because of this, we can read other people extremely well. I know how you feel. I know exactly how you feel at any given moment. Because I can see all the micro expressions, I can smell your hormones, I can hear your heartbeat. I know.
So when I am with other people, I have to deal with not only my own emotions but yours too. And the more people you add, the more emotions I have to deal with.
You have to be trained to correctly read other people. We never lost the ability.
This is one reason why it’s extremely draining to be with other people.
Another reason is that Neuronormals lie all the time. Most of it is “white lies”, like saying “I’m OK” when we know you are not, or saying “I’m not angry” when we know you are. People say things they are expected to say and don’t say things they have learned are not OK. At the same time, the society keeps touting “you must not tell lies” and “I appreciate honesty most of all”. While lying through their teeth. While promoting lying. By saying it’s not only OK to lie, it’s what you should do in some situations… and do you know why? The most ridiculous reason of all… “not to hurt someone’s feelings”… Why do I think it’s ridiculous? BECAUSE THEY HAVE NO PROBLEMS HURTING OUR FEELINGS AT ALL! If THEY hurt OUR feelings, it’s because we are too sensitive, oversensitive, precious snowflakes… So, yes, ridiculous.
It is very confusing and tiresome. Very stressful.
so another aspie came in and respectfully asked me to bow out and leave the discussion to her – i acquiesced. no need for two people pounding on the same neurotypical skull 😀. but i can feel inside me how i am not ready to make nice – but i also see that it is not this specific neurotypical it is about – it is a rather long life full of neurotypicals. i can explain to you how i work, what makes me tick, what makes me happy, sad, anxious, stressed out; what makes me go into overload, what triggers my cPTSD and melt-downs – but you can never understand what it means on an emotional, physical, mental, social and spiritual level to be autistic me. you cannot understand what it means when you call my special interests an ‘obsession’ or ‘fixation’ instead of ‘hobby’. or what it does to me when you call my melt-downs ‘tantrums’. nor can you ever understand in what ways it harms and hurts me when you say things like ‘we are all a little autistic’ or ‘we are all on the spectrum’. it is not any fault of yours. we are different you and i. i have no idea how it is to be neurotypical you. still, i do not talk about you or to you in demeaning or diminishing terms.
i am willing to admit that i have no clue what it means to be neurotypical. still, i am willing to treat you with respect. i do not see the same willingness in you. i do not see the same respect in your treatment of me. i see demands that i adapt to your world on your terms. i see subtle and not so subtle aggressions in the form of eye-rolling, sighs, glares, micro-aggressive body language whenever i fail to fit into your neurotypical mold. i hear your veiled threats of social punishment of, emotional withdrawal from and intellectual denial of autistic me whenever i interact with you and fail to fit into your neurotypical idea of ‘acceptable’.
i feel, see and hear the slight tone of condescension in your voice the moment i tell you i am autistic. you try to cover it, you try to cover the small movements of truth in your face as you feign an interest, a patience, a tolerance or an acceptance you do not feel. you do not think i can see, feel or hear this, because what you think you know about me you have not learned from me. you read them in a book, or in article online, written by someone who is not autistic.
i see a world full of neurotypicals who have absolutely no interest in autistic me. a world of neurotypicals who daily and hourly subject me to aggressions, denigration, denial, threats to my person, threats to my soul and my spirit. a world of neurotypicals who silently accept when other neurotypicals subject me to abuse and other forms of violence.
and you say you do not understand why i am angry and not ready to make nice?
Me: to the neurotypicals in this thread – check your privilege and shut up and listen, goddammit!
Neurotypical PhD: If that is directed to myself … please provide ur PHD in psychiatrics
Me: yes it was directed at you, because you are being an idiot. you don’t listen, you think you know best when it comes to autistics – even those who actually live autistic reality. comes directly from your neurotypical privilege and it is ignorant, abusive and offensive.
when neurotypicals speak on neurodifferent issues, they are not speaking for us. they are speaking for their understanding of neurodifferent issues and they are speaking from inside their privilege. they cannot speak for us. it does not matter how well-meaning, well-informed/well-educated or sensitive they are – they are not qualified to speak on neurodifferent issues. that they do, despite their inherent incompetence, is nothing but them using their neurotypical privilege. any organization or educational body that is not run by or directed by neurodifferent people is automatically dominating the neurodifferent narrative are and violating neurodifferent people and their lives. even the frigging psychiatrists.
Neurotypical PhD: I don’t know what’s best for Autistics. .. my children are not autistic.. myself is not either. Not once did I claim to know that I knew Autistics. .. what I do know is mothering given my experience of being a mother of 5… I also know there isn’t much support in Ontario for Parents of Autistic children as I have MANY friends who’s children are autistic . And that concerns me ….. as I feel they deserve support and life skill on how to deal with their children and not just prescriptions. (my emphasis)
this is where i really lost it – how to deal with their children – as if autistic children are some sort of psychological baggage or walking situational crisis… or juvenile delinquent that needs ‘dealing with’… it is sickening, and the worst part of it that she doesn’t realize what she is saying to us – the autistics in the thread – or that it comes from inside her neurotypical privilege. she is clueless. she is trying, but she is clueless.
Me: yes, you know people with autistic children. but you are not listening to [OP] – how about neurotypicals reach out to US, the autistic adults and ask us how to raise autistic children? but you dont, you complain, whine and go on about how hard it is, but not even when the solution is right in front of you do you avail yourself. why? because of neurotypical privilege. you are stuck in ‘autistics-are-lesser-people’ mode and are incapable of understanding that we – the autistics – are the real experts, not the government, not the neurotypical psychiatrists, doctors, nurses, not even the parents. have you [Neurotypical PhD], reached out to even one autistic run organization and asked for information about what is available to neurotypical parents in terms of learning about and acquiring skills to raise their children without abusing them?
Neurotypical PhD: 1st I don’t complain or whine … I man up and deal with shit.. so clumping folks is not correct .
Yes I have reached out for friends to organizations that specialize in Autistics …. Autism Ontario and Geneva center …. and autism does not directly effect me but I care enough too
oh. she cares. but apparently not enough shut up and check her frigging privilege, language and prejudices. it is like what someone said earlier in the thread “The worst part is you’ll leave this thread thinking you were in the right the whole time, when you could have learned something.” nope she will not have learned anything. she will enter the next discussion just as clueless and arrogant and sure that she knows better than autistics.
Me: ‘you’ in the first part of my post was a ‘general you’ – and yes, clumping is correct, because there are 90 of ‘you’ and 10 of ‘us’ in any given demographic at any given time.
the number of neurotypical parents that actually are aware of how their autistic children function and how to handle situations when they arise, are from what i have gathered from various groups and pages i am in and on, are just about 5 in 90.
it is common sense that you do not drag your child across the floor or the pavement – if this had been a neurotypical child, child services would have been called pronto – if not the police. but that did not happen. yeah, she was yelled at on the internet. got her picture in the paper. that was it.
1. she could have just sat down with him – no autistic child has melt-downs for no reason, so find out what triggers them and find ways to minimize the risk of exposure to triggers.
2. she could have just held him – if i can hold my 200lb wife when she is in a melt-down so she wont hurt herself and until she calms down, then a parent can hold a 4-year old.
3. she could have called for help.
parenting is common sense. there is no need to abuse a child, and no excuse to do it either.
(i am of the opinion that as soon as a child is diagnosed with ASD it should be removed from their neurotypical parents and fostered/adopted by autistic parents. but that i cannot say that i think – because that would be horrible to the neurotypical parents…)
Very painful to read – and so true – just don’t do this to us!
TW: Ableism, abuse
Explaining my reaction to this:
means I need to explain my history with this:
When I was a little girl, they held my hands down in tacky glue while I cried.
I’m a lot bigger than them now. Walking down a hall to a meeting, my hand flies out to feel the texture on the wall as I pass by.
“Quiet hands,” I whisper.
My hand falls to my side.
When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed.
In a classroom of language-impaired kids, the most common phrase is a metaphor.
A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at…
View original post 798 more words
…trumps neurotypical parents’ right not to cringe.
During last Wednesday’s meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing “ASD individual” in our report to “individual with ASD.” The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. “I disagree,” she said as the suggestion was read aloud. “I’m not a person with autism; I am Autistic.”
Immediately, a mother sitting next to her responded, “I come from a time where that word, ‘autistic,’ had — still has — a negative meaning. It’s offensive. When someone refers to my son as ‘the autistic,’ I cringe at that word; I get ready to defend him.”
no, mommy, you do not get to define your son. cringe away and get used to referring to your son as autistic. check your privilege and your gimp phobia. you refuse to identify your son as autistic for the same reason a homophobic father refuses to talk about his gay son.
But why are we self-advocates so opposed to this terminology? Aren’t we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don’t. Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin. (my emphasis)
person-first-language implies a need to separate the individual from their autism, as if autism were some sort of shameful disease. newsflash – it is not. it is a neurological variation.
it is interesting that ‘person-first-language’ is mostly used by neurotypicals, don’t you think? it is a great example of how neurotypicals dominate the autistic narrative and use their privilege to deny and demean us through the way they speak about us. their insistence on using person-first-language is offensive and abusive and it is a way by which they assert their perceived right to define us.
It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am. (my emphasis)
neurotypicals have no right to define us. they have no right to separate us from our autism. in fact they have no right to speak for us or advocate for us, unless they do it in our words, using our definitions of ourselves.
there are, by orders of magnitude, more neurotypical people than neurodifferent people in the world. when one considers the amount of discourse happening around the neurodifferent experience, due to sheer numbers, a neurotypical understanding of “neurodifferent issues” is dominant in our society today. this dynamic ensures that the dominant “neurodifferent” narrative is also a false narrative that is repeated, analyzed, and criticized ad nauseum by a largely neurotypical audience, reinforcing the validity of this dominant (and factually inaccurate) “neurodifferent” narrative. when neurodifferent people protest the propagation of the dominant (and factually inaccurate) “neurodifferent” narrative about the neurodifferent experience, neurodifferent people are told that we are stifling free speech, that we are snowflakes, or that we just need to learn to perform better public “debates.” when neurodifferent activists express anger, resentment, and/or frustration with this dynamic, neurotypical people can respond with their own anger, resentment, and/or frustration because a lot of neurotypical people have already invested more time and attention into trying to understand the dominant (and factually inaccurate) “neurodifferent” narrative than they ever wanted to in the first place and come to perceive neurodifferent activists as pushy, bossy, and unreasonable.
resolving these misunderstandings in the face of an army of trolls who traffic misinformation, civic leaders who attempt to pass anti-neurodifferent laws, and neurotypical anger, resentment, and/or frustration while also trying to support equality for neurotypical, neurodifferent, is the primary purpose of neurodifferent advocacy today.
this is so spot on.
when neurotypicals speak on neurodifferent issues, they are not speaking for us. they are speaking for their understanding of neurodifferent issues and they are speaking from inside their privilege. they cannot speak for us. it does not matter how well-meaning, well-informed/well-educated or sensitive they are – they are not qualified to speak on neurodifferent issues. that they do, despite their inherent incompetence, is nothing but them using their neurotypical privilege. any organization or educational body that is not run by or directed by neurodifferent people is automatically dominating the neurodifferent narrative are and violating neurodifferent people and their lives.
my special interest is studying and talking about “torah, talmud and (jewish)theology”. not many, if any, on fb has that special interest. yesterday was a day when i felt extremely lonely in this (i always feel lonely in this, but yesterday was extreme). i said to a friend:
“if only my special interest had been trains (like a normal aspie) or britney spears (like a normal gay aspie). no, no, i had to pick torah… which no normal yid cares about as long as a rabbi doesn’t tell them they can’t eat chinese on xmas. i tried joining other torah groups on fb, but most of them are either militant orthodox or wishy-washy renewal. in the first kind i know too little and in the second kind i either know too much or am ‘too jewish’.”
it is true, i feel lonely. i have always felt lonely, on the outside looking in – i have never had a group of my equals to share my special interest with. it is painful.