“The first question we wanted to ask was - why blue? What does the color blue have to do with the autism spectrum? The answer is that Autism Spectrum Disorders are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). So, the color blue represents the boys diagnosed with autism.”
Quick shout out to neurowonderful! Who has been an excellent resource about autism and all around awesome person! Thank you so much for all that you do! I’ve learned so much from you as I’m sure so many more have!
(Image description: A partial screenshot of a blog post. The title reads “How I reduced screaming and verbal stimming in my child with autism”, and below that is a colour photograph of a hand holding a rectangular plastic “clicker” device.)
I think I may have mentioned this blog post, and the sadness and confusion I felt when I came across it, in one of my videos. This screenshot is from the blog of an “autism parent”. Yes, that is a clicker. Yes, she is encouraging the use of animal training methods on Autistic children. Yes, she considers any kind of vocal stimming, not just screaming, to be a “bad behaviour”. To top it all off, her blog banner reads, “Discovering SOLUTIONS to the Everyday Problems of Living with AUTISM”. Here is an excerpt from her tutorial on how to train your disabled child like a dog to have a “Quiet Mouth”:
Third, I sat back and watched my child. Since he was making bad noises, I decided to reinforce Quiet Mouth (i.e., lips together, no sound). Whenever he had a split second of Quiet Mouth, I immediately tagged (made a click-sound with the device) and handed over a treat. Every time his mouth was Quiet, I tagged (clicked) and treated. Soon there was much more Quiet Mouth behavior. When doing this it is important to ignore and pay no attention to vocal stims or screaming. Do not look at the child, do not speak to him/her or explain. Just say nothing, and immediately tag and treat as soon as there is even a split second of Quiet Mouth. You can also tag and treat a child for any appropriate vocalizations. If he/she says a nice word, or makes an appropriate comment, then tag and reinforce that. Your goal is to increase Quiet Mouth and appropriate vocalizations.
And sadly, as bad as this attitude and treatment of Autistic children is, this is a relatively tame example when compared to the other unethical treatments, therapies, and methods of discipline that Autistic children are being subjected to every day (all in the name of making them appear less obviously Autistic). This is why we need Autism Acceptance Month and not the fear-mongering, negative, misinformed “awareness” that Autism Speaks and its allies are pumping out this April.
We need acceptance because Autistic children should be loved and accepted wholly and completely for who they are, not hurt and mistreated in their parent’s frantic search for a “cure”. Because Autistic people deserve to be treated with respect and listened to, not silenced and forced or coerced to conform to an ableist, non-disabled ideal. Because Autistic children need accommodation and understanding to live healthy, happy lives, not sketchy “treatments” and intensive, soul-crushing “therapies” to try to make them appear more neurotypical and less Autistic.
Hey guys please remember to celebrate Autism ACCEPTANCE month this April and not Autism AWARENESS month. Autism Acceptance month is supported by #actuallyautistic people. Autism Awarness is supported by Autism Speaks AKA the people that have been spreading propaganda about Autism and other cognitive disorders and making money off of it. Autism Awarness instills fear and lies about autistic people in an effort to “cure” us. Autism Acceptance says “We’re not sick. We are here and can live happy healthy lives.”
I hear alot of people misinterpreting or misusing the term ‘autism spectrum’. So for Autism Acceptance week, I decided to make a comic to help explain the term and how it affects things. Archie is one of the reasons I became so interested/knowledgeable in autism (I like to go all out in research when I write characters for comics n such) so he’s the one presenting everything! The rest of the comic is under the cut, because I don’t want to spam ^^;
Things You Can do to Help Disabled People That Don't Cost A Cent
Do not talk about an obviously disabled person in front of them as if they can’t hear or understand you.
Do not talk to a disabled person’s companion instead of them.
Ask permission before touching people, or their wheelchairs/other equipment. Even if you want to help.
Ask disabled people about their lives and really listen to their answers. (Within reason. Asking people personal questions about their sex lives, for example, is rude unless you are very close to them and they’ve communicated they’re OK with that).
Listen to what they say whether they are speaking, writing, typing, using text to speech, using a letterboard, using PECS, gesturing, using sign language, or using any other form of communication. People who cannot speak can still communicate.
Stand up for people you see getting bullied.
Understand that disabled people don’t just need friends, they can be friends, too.
Every public place does not need to have loud, blaring music and TVs with flashing screens.
If you blog, put bright, flashing images that can trigger seizures under a cut so that people with seizures can avoid looking at them.
If a job can possibly be done without a person driving, don’t require candidates to drive/have a driver’s license, and don’t interview candidates and then reject them because they don’t drive.
When talking to someone who has trouble speaking or stutters, and takes a long time to speak, wait for them to answer. Don’t keep repeating the question or pressuring them. Yes, if you’re like me and your mind is going really fast and you forget what people are saying if they take too long, it can be hard to be patient. Do it anyway.
If you are talking to a deaf person, make it easier for them to lip-read by facing towards them while looking at them, and not covering your mouth with your hands.
If you are talking to someone with hearing impairment or auditory processing disorder, it is more helpful to slow down or rephrase what you’re saying than to just speak more loudly.
Some disabled people have difficulty understanding nonliteral language such as metaphors and idioms (e.g., “a stitch in time saves nine”). If you’re talking to someone like this, try explaining what you mean by these figures of speech, or just not using them.
Recognize that failure to make eye contact does not mean someone is lying to you. It may be uncomfortable for them.
Recognize that unwillingness to go out to loud, crowded bars does not mean someone isn’t interested in socializing with you.
If people have difficulty spelling, or using the appropriate jargon/terminology for your social group, do not assume they’re stupid. You may need to paraphrase some “jargon” for them.
Recognize that a person can need time alone and it doesn’t mean they don’t like you or want to be with you. It’s just something they need so they can function at their best.
If a person does not recognize you, do not assume they don’t care about you. They may be face-blind.
If a person does not remember your birthday (or other major names, numbers, or dates) do not assume they don’t care about you. They may simply have a bad memory.
Understand that a disabled person’s talents, however esoteric, are real, not unimportant “splinter skills.”
Colorblindness affects more than just knowing what color something is. To a colorblind person, colors that they can’t see will look the same if they have the same degree of lightness/darkness. That means that to a red-green colorblind person, a red rose on a green background will blend in instead of contrast starkly, and the Chicago CTA El map will be difficult to understand. Understand that something that stands out to you and seems obvious may literally not be visible to a colorblind person.
Don’t tell them “but you look so normal.” But, if they accomplish something you know they were working really hard to do, it’s great to compliment them on it.
Understand that a person can be working incredibly hard to do something and may still not perform as well as you’d like them to, as well as the average person would, or as well as the situation demands.
If someone has a major medical problem, disability, or chronic illness, then just eating some special healthy diet or exercising more isn’t going to cure it. It might help, it might hurt, it might do nothing, but they’ve probably heard it before, and it’s none of your business in any case.
A person with OCD knows that checking or counting or whatever compulsion they perform won't really prevent disaster from happening, it’s just a compulsion. That doesn’t stop them from feeling the need to do it anyway. A person with anxiety may know at least some of their fears are irrational or unlikely to occur. That doesn’t stop them from feeling anxious. A person with trichotillomania may know it hurts them to pull out their hair or pick at their skin, but they have trouble stopping themselves anyway. A depressed person may know they would feel better if they got out of their house and talked to people, but that doesn’t make them feel any more up to doing those things. A person who hallucinates may know the hallucinations aren’t real, but that doesn’t make them go away or feel less upsetting. You see the pattern? You can’t cure people with mental illnesses by telling them they’re being irrational or hurting themselves. If it were that easy, they’d have cured themselves already.
Do not tell a person with ADHD or mental illness that they should not be taking medication. This is a personal decision. Furthermore, since medications have wide-ranging effects on people’s bodies and minds and often unpleasant side effects, most people taking medications have thought through the issue, done a cost-benefit analysis, and decided that the ability to function better is worth it. Their decision should be respected.
A disabled person with intellectual disability who has the academic or IQ abilities of, say, a seven year old does not actually have the mind of a seven year old. They have different life experiences, needs, stages of life, bodies, and so on.
If a disabled person is having a meltdown, they are not angry, they are terrified. They’re not throwing a tantrum or being aggressive, they have gone into fight or flight. The best thing you can do is remain calm yourself and help them calm down. It may help to keep your distance, keep your voice low and calm, let them retreat to a safe place if they know to do that, or remind them to do so if they don’t. Reasoning with them won’t work well because they’re unlikely to be able to hear and understand you. The worst thing you can do is start yelling yourself, threatening them, be violent to them, cut off their escape route, or get right up in their personal space.
Other ideas? Please reblog and add more. The more the merrier.
I will not shrink or change who I am to make others happy.
There is no “normal” woman hiding behind my autism. I am me, autism and all.
Being autistic has shaped every atom of my being. Everything from how I move to how I experience my emotions.
You can’t take autism away without killing me.
I stim shamelessly in public. I have a lot of sensory issues and difficulty with transitioning between activities. My overstimulation threshold is extremely low, so I’m almost always stimming in some form or another.
Sometimes I have meltdowns– some of them involve screaming, some are crying and some are self-injurious. Yeah, I punch myself in the head or bash my forehead against things.
I can talk reasonably well, but the words I say are often simpler than my thoughts. Speaking requires me to engage a lot of brainpower, though you can’t see the effort because it’s only palpable to me. Typing uses a lot less brainpower. I’m better at expressing myself in writing.
I am who I am and it’s not my problem if you don’t like it.
Autism Speaks wants to erase me and others like me from existence. Autistic people who can’t speak or make their communications understood by wide audiences are especially vulnerable to the hate and negativity this organization spews about us.
You are a hypocrite if you say “be yourself!” while supporting an organization that says “but not like that. We have to fix you first.”
Autism Speaks devalues autistic peoples’ lives. Why support that? So don’t.
Don’t wear blue on April 2nd. Don’t light it up blue. Don’t go to Autism Speaks walks unless you’re there to protest against the organization.
Autism Acceptance Month: Things to Do (and things to avoid)
*Will be updated every now and then throughout April*
Invariably, and inevitably, every April it is a deluge of theAutism “Awareness” campaigns that do little to promoteacceptance for autistic people. This is a compilation of good ways tosupport acceptance for autistic people and make it
Autism Acceptance Month instead, and also a list of
things to not do.
Here we go!
Amplify autistic voices. This is our month (not, as Autism Speaks
would have you believe, a month for“families of people affected by
autism”) and we want it to reflect that.
Actually autistic autism bloggers/blogs to start with (only a sampling of the many fabulous people out there):
Image is of a text message from Did you know to ASAN as on an iPhone or iPad interface. The text from Did you know reads: “Autism $peaks yearly media budget is $10,238,115. The reply from ASAN reads "That could buy 14,226 iPads to let nonverbal Autistics speak for ourselves!
Below the texts is an Autistic Self Advocacy Network logo, with i"April is autism acceptance month” in smaller text below the logo.
I was aware of autism five years before I even started to consider that I could be autistic. It was six years of that awareness before I was diagnosed by a doctor who knew autism is a lot more complicated and varied than what fits neatly into “autism awareness” campaigns. I was never like the poster children for autism, who are white, cisgender boys (never adults) from (upper)middle-class families. I didn’t think I could be autistic until I found what actual autistic people had to say about autism.
Autism awareness, at least as it currently exists, fails a large segment of the autistic population. Most people aren’t white, cisgender boys. We need awareness that includes atypical autism traits. If I or my family had read that list of traits when I was fifteen, I might have realised I’m autistic a lot sooner and found the resources and support I need much sooner, too.
My autistic traits are atypical, and they’re full of contradiction. I’m intelligent and even good at language, even metaphorical and idiomatic language, but sometimes I can’t remember how to form sentences or forget words for everyday things like chairs or my own native language just starts to sound like complete gibberish. I struggle to answer “how are you?” but I’m often complimented on my self-awareness and understanding of both my own and other’s emotions. The tiniest sounds can distract me or give me a headache, but sometimes I can’t even hear someone shouting my name. Autism is inconsistent. It’s complicated.
If you want to know what autism looks like, if you want to spread real awareness, then you need to listen to the people who know autism best: autistic people. Maybe this “Autism Awareness Month,” instead of wearing blue, walking to raise money for a dangerous organisation, sharing stories meant to incite fear or pity, or putting blue ribbons on everything out of the irrational belief that ribbons solve everything (seriously, stop it; ribbons don’t cure cancer either)–instead of spreading unhelpful awareness created by non-autistic people, you can help spread and deepen awareness of what autism actually is by reading and sharing the accounts of actual autistic people.
Image description: The first photo shows me (a white-passing, femme young adult person) sitting in a wheelchair, holding one sign in my hands and with one leaning against my legs. The first sign says, “Got questions? Autistic adults are the best resource of parents of autistic kids. Autisticadcovacy.org”. The second sign says, “Autistic rights are human rights #lovenotfear”.
The second photo shows myself in my wheelchair with my signs and three other femme people who are all also holding signs. The visible signs are rainbow coloured and say “Love not fear”, “Think posAUtive”, “Autism Speaks does not speak for me!”, and “Autism is Awesome”. There is a small table behind us with a sign that says “free earplugs”, a box of earplugs, and ASAN pamphlets on top.
Pictures from Vancouver ASAN’s protest at the Autism Speaks walk this morning. I made those two signs I’m holding, Alanna made the rest of the signs, and Marvin took these photos. A few more people ended up coming so there were seven of us there (and Marvin). I think we all did good work today!
Good. Vaccinate everybody. Make this world full of interesting, diverse, passionate, autistic individuals. Fill it with accessibility and alternate modes of communication. Dim the lights everywhere. Make the world a gentler, more colorful place. I’m so glad you’re on board.
Somebody once asked me, a little horrified I think, “Wait - what are the bad parts of being neurotypical??”
I’d made an offhand comment about how being autistic has good and bad parts, just like being neurotypical has good and bad parts.
I think one the bad parts of being neurotypical is that you don’t get so many of the amazing parts of being, for example, autistic.
Neurotypical people can fidget, for instance, but they can’t ever know how good it feels to have your body just flow into a stim, to feel your thoughts start lining up or your body get comfortable when you stim the way you need to. Autistic people (and some others!) have this amazing experience where our bodies find motions that express and comfort and regulate in ways that neurotypical people can never fully understand.
And neurotypical people can enjoy sensory experiences, but to be autistic is to have a unique relationship with sensory input. So much of our sensory experiences are amplified compared to those of NTs , and while that can and does cause overload etc. sometimes… when the input is good? It’s glorious. Good fabrics and good sounds and good smells and good tastes and textures - we get to feel them all more intensely.
And echolalia! Echolalia is so good and so enjoyable and neurotypical people, I think, get only the barest shadow of what it’s like.
NTs can have hobbies and passions and callings, but they can’t ever, ever know the pure and consuming joy that is a special interest.
There are good and bad parts to being autistic. Neurotypicals, you’re going to have to accept that, and along with it the concept that autistic people have good experiences that you, by virtue of being neurotypical, simply cannot have.
You don’t see yourself as an object of pity because you lack those experiences, do you? You aren’t going to pour millions into research to have brains like ours, are you? I mean, even if you could do it, you wouldn’t be you anymore. And the way your brain works is just fine for you, you don’t mind not having good autistic experiences because you have your own!
Well - same. I don’t want to be neurotypical. Being autistic is an integral part of my personality, and I wouldn’t give up my good autistic experiences for a shot at your neurotypical ones in a million years. What I want is to be accepted for who I am as an autistic person, for people to respect and accommodate my needs the way the world respects and accommodates your needs as a neurotypical person.
When professionals assume that parents of disabled kids see ghosts
In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.
According to this narrative:
Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting.
They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible.
At some point, the parents are forced to confront their child’s disability.
They lose their fantasy of the child they expected, and this is emotionally devastating.
In order to move on, they have to mourn the loss of the child they expected and the life they expected.
Parents need emotional validation and help working through that.
All of this is very widely believed, and I think this model causes a lot of problems.
I think the grief model is a problem on several levels:
When parents are grieving for the child they expected, it’s really hard on the child they already have:
Children want adults in their lives to see them, approve of them, and love them.
When parents are seeing ghosts, they’re not seeing their real child.
Children can tell when adults in their lives are looking past them. It hurts.
When parents are mourning for the child they expected, they are disappointed by the child they actually have.
Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
And it especially hurts when the child has no control over the things that are disappointing their parents.
While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
That hurts. And it leaves scars.
Kids need support in navigating this, and they don’t often get it:
There is often a tendency to pretend that kids don’t know.
But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
Kids need people in their lives who see them, and not ghosts.
Kids need people in their lives who can accept and value them as they are.
Sometimes that can’t be their parents. Or can’t (yet) be their parents.
But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters.
If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)
Further, not all parents actually feel this way:
The professional narrative about grief and mourning does not accurately describe all parents.
Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
Not all of these feelings are negative.
Even when parents have negative feelings, they’re not always grief.
Sometimes parents feel overwhelmed and confused about how to support their child.
(Or worried about how to afford the things their child needs).
(Or repulsed by things professionals are telling them to do to their children as therapy.)
Sometimes parents feel ashamed about not having noticed sooner.
Sometimes parents feel concerned that they may have caused their child’s disability.
Or any number of things.
Not all parent feelings are grief, and the full reality needs to be acknowledged
Parents are sometimes pressured into mourning when they weren’t already grieving:
The grief and mourning narrative is strong and pervasive.
Parents are often expected to describe everything they’re feeling as grief.
Parents are often not given any support in working through the other feelings and doubts they are having.
This can result in parents being pushed into a mourning process that wasn’t actually necessary for them.
It is very damaging to both parents and children when this happens.
It is not good to grieve for the living. When it’s avoidable, it should be avoided.
It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily.
(Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)
Tl;dr There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.
Image is an Alternative and Augmentative communication device showing a screen with a combination of images and words to choose from. The message on the screen reads “I have something to tell you.” The caption for the image says “Autistic people are speaking. Why aren’t you listening?”
Part of autism acceptance is allowing autistic people to choose what strategies work best for them, no matter how “odd” the strategy may be. When I am stressed out or angry or overwhelmed, I go into my “safe place” which is under a table that’s now turned into a fort and watch shows I love and hug soft things. I also stim to help my brain focus. It is so important to allow autistic people to do whatever it is that helps them be happy, whether it is drawing, flapping, fiddling with string, or scripting. Don’t try and force autistic people to be “normal”. Autism acceptance is where normal is SELF-DEFINED.
Ultimately, everyone should be able to decide what they think their normal should be. It’s a basic human right.
Image description: A youtube comment posted by user “grandmasbabees”. Their avatar is a family portrait featuring a white multigenerational family. The message reads: You paint with too broad of a brush. You may not want a cure but the family that struggles with their aged out of the system non verbal in diapers and severe self abuse DESERVE A CURE. Open up your world and see others before you say Autism should not be cured.
Above is a youtube comment that I recieved on my What’s Wrong With Autism Speaks? video. Below is my response:
Hi grandmasbabees. Firstly, I did not say Autism should not be cured: I said it can not be cured, and that many Autistic people and their families do not think that Autism needs a cure. My opinion is that focusing on a cure for Autism is harmful and unhelpful, but opinions mean little when what our science knows of Autistic neurology says that Autism will never be curable.
The reason that Autism will never be a curable condition is because it is a developmental disability. Autism is a neurological condition, not a disease. Diseases and illnesses can be cured. Developmental disorders can not. There is no way to change the physical and neurological structure of the brain of a living human being, and so there will never be a cure for developmental disabilities.
Secondly, you say that the families of “ non verbal in diapers and severe self [abusive]” Autistic people deserve a cure. I say that the insistence on searching for a cure for Autism is not only futile, it is unfair to the very Autistic people that you mention.
By making discussions of a theoretical “cure” all about the families of Autistic people– by focusing only on how hard it is for the neurotypical family members and by insisting that they deserve a cure– you are erasing the experiences of all the actual non-verbal Autistic people. You say family members deserve a cure– I say that Autistic people, and their families, deserve better.
Autistic people deserve to have all those millions of dollars that currently go to research to be redirected towards services and accommodation for Autistic people and their families. All that “research” is focused on finding the “Autism gene”, or developing a prenatal test for Autism. Meanwhile, one in a hundred people on this planet have ASD, and many of those people are non-verbal and frustrated. Many of these people are being mistreated or even murdered, and their families are struggling. A pre-natal test for Autism wouldn’t help any of those Autistic people or their families.
The thing that we all need to understand about self-harming behaviours in non-verbal Autistic people is that it Autistic people don’t self-harm because it is an inevitable symptom of Autism, or to make the lives of their loved ones more difficult. Self-injurious behaviour is an expression of a frustration that is unimaginable to neurotypical people.
Non-verbal Autistic people who can’t speak with their mouths and who have no other way to communicate will self-harm out of deep frustration and in an attempt to control their environment. Now, what would happen if those millions of dollars currently going towards “research” (which isn’t helping any existing Autistic people or their families at all) was instead poured into programs to help non-verbal Autistic people communicate via alternative methods?
Text-to-speech, AAC, the rapid prompting method, sign language– all of these alternative methods have the potential to give non-verbal Autistic people the chance to express themselves. And the interesting thing about self-harming behaviour is that it decreases exponentially as a person’s ability to communicate and make their needs known increases. Self-harming behaviour is not inevitable in Autistic people, it is an expression of being frustrated, misunderstood, and (as Carly Fleischmann has said) “trapped in a body [they] can’t control”.
Along with providing the teaching and technology needed to allow non-verbal Autistic people to communicate via alternative methods, putting the money that now goes towards “research” towards the area of “family services” would provide more and better therapies, accommodation, and education for Autistic people. That money could also provide services, financial assistance, and respite care for the families of Autistic people.
Autism can never be cured, and since the best we could hope for is a pre-natal test to detect Autism in fetuses, it doesn’t really matter who does or who doesn’t think Autism “should” be cured. So instead, instead of spending millions of dollars trying to find a genetic marker or pre-natal test (a goal that we may never achieve anyway), I believe that we should focus on helping actual Autistic people who are alive now.
You are right. I don’t think that Autism needs a cure, even if it could be cured. I think that Autistic people need understanding, acceptance, and accommodation.
I believe that Autism organizations should be putting money towards providing what Autistic people need to communicate, learn, and grow into healthy, happy Autistic people, and on providing the assistance and services that the families of Autistic people need to thrive and be healthy.
I know that Autism Speaks does a terrible job of being a charity, and that their message of ignorance, fear, and hate actively hurts Autistic people, and that Autism Speaks perpetuates cure culture and the search for cure or medical treatments for Autism to keep parents desperate and generate money.
I also know that messages like yours come from a place of emotional hurt, so I don’t take them personally. While acceptance is the hardest topic for the neurotypical family of Autistic people to understand and accept, I am glad to have the chance to address it.
Speaking of worlds opening up, I feel like you probably haven’t read any of the writings by the “severely autistic” non-verbal Autistic advocates that I linked to in my video description. If you are interested in opening up your world and seeing what the Autistic community is saying about Autism Speaks, cure culture, and acceptance, you can use the resources below as a starting point: