Every April, autism takes a center stage in global awareness. All around the world, well-meaning, good-hearted people “Light it up blue” for Autism Awareness Month, and they decorate their social media with the puzzle piece frames and the jigsaw rainbow awareness ribbons, go on awareness walks, fund-raise, and donate.
And, every March, autistic adults are already dreading April. Many report feeling traumatized by previous Aprils. They begin to mentally and emotionally prepare for what is ahead, feeling powerless to stop it.
Those well-meaning neurotypical (NT) allies really have no idea how autistic adults feel about Autism Awareness Month, and if they did, they’d spend the capital of their hearts and good intentions differently. This article explores why NT allies don’t know how autistic adults feel and how to best lend their support.
10 things autistic people wish their neurotypical allies knew going into April:
1. We really don’t want or need awareness. To most non-autistic people, awareness of autism is to be aware of a disease, to regard it with a somber recognition of how serious a problem autism is and how fervently a cure is needed. It doesn’t conjure the reverent solidarity that breast cancer awareness does for survivors, the bereaved, and their loved ones. Instead, it means that the world comes together to talk about the tragedy of autism.
2. Most of us do not want a cure. The vast majority of autistic adults do not want a cure, nor do they see autism as a disease. It is simply their way of existing, perceiving, and being. Autism is inextricable from the identity and perception of the autistic person, and a “cure” would mean to erase from them what is their core self and what their divergent minds can contribute to society. Many of us are quite proud to be autistic.
3. We wish you’d see us outside of the medical disability model. The medical model pathologizes our innate traits. We may develop on a different curve, have different strengths and weaknesses, and relate differently from the majority of the population, but those traits aren’t inherently negative. In order to be characterized as a “disorder,” a condition must impair a person’s quality of life.
For this reason, autistic innate traits are described in the medical model of autism in the most negative language because they are not how “most people” are. For example, we express empathy differently, but a lack of eye contact or not responding with verbal expressions of emotional solidarity does not mean we lack empathy. We show it in different ways, which may mean that neurotypicals misinterpret it, but that doesn’t mean it’s not profoundly felt. The medical model would portray autistic empathy as deficient.
4. We are extremely offended by puzzle pieces, “Light it up blue,” and Autism Speaks. Autism Speaks has dominated the world’s narrative about autism. They are a fundraising monolith, and their information distribution campaigns rank at the top of search engine results around the internet. The focus of their campaign was originally to scare the world into realizing how important it was to find a cure and eradicate autism… and to implicate vaccines as the culprit. They have continued to deny autistic perspectives, and only a minuscule portion of their many millions in donations actually goes to helping autistic people (often less than 1%).
Essentially, donations go to marketing puzzle piece propaganda and the international “brand” Autism Speaks has created. They are responsible for the “Light it up blue” campaigns. For a more detailed breakdown and alternative charities to support, click here. We ask that you share autistic-authored posts and articles in April and hashtag them #redinstead as a counter to Autism Speaks.
5. We prefer identity-first language over person-first language. This is an important one. We prefer to be called “autistic” (identity-first) over a “person with autism” (person-first). You may have heard that it’s more respectful to use person-first language, but that only applies to communities that prefer to be separated from their diagnoses. Autism does define us and is inseparable from our identity. It is not shameful or embarrassing to be autistic.
6. We are great at self-advocating, and we wish you’d learn about autism from autistic people. There are thousands of blogs, websites, organizations, and informational resources out there produced and managed by autistics. The autistic community is a thriving, tight-knit juggernaut of change and advocacy, and they uplift other marginalized populations by focusing on intersectional human rights outside of the neurodiversity paradigm.
They’re fierce defenders of children and dedicated scholars and researchers. They can be found on social media by searching the hashtag #actuallyautistic. You can find some of the most insightful, relatable, and informative posts right here on NeuroClastic.
7. Autism doesn’t end at age 18. Most people tend to think of autism as a childhood disorder, but an autistic person is autistic every day of his or her life. We prefer the word “neurotype” over disorder, while you’re at it.
8. Function labels are deeply offensive and inaccurate. When someone is autistic, it has been socially acceptable to comment on how high- or low-functioning they are. The truth is, autism is invisible, and a person’s struggles cannot be measured by how a person seems to be performing. Often, “function” comes at great price to the autistic person, meaning that they have to hide or “mask” their innate traits and behaviors to appear more “normal.” You can read all about function labels by clicking here.
9. Autistic adults are the “severe” kids you think we are nothing like. Many of us, as adults, were the nonspeaking or unreliably speaking children you think are vastly different from the adults you see online. For example, I was not able to read fluently until 5th grade. In my second grade class, the readers were grouped by bird names. The top readers were hawks and eagles. Middle readers were blue jays and cardinals. I was the only crow at the bottom of my class.
Adults, though, have the ability to preserve their own dignity and autonomy by controlling how much the world knows about their weaknesses and struggles. There are linguists and writers who rarely, if ever, spoke a word in school. There are professionals who wear incontinence pads daily because they never were able to gain full control of their bladder.
Those who are nonspeaking can often type or communicate other ways. Many of us still struggle with meltdowns, but we are able to accommodate for our own needs as adults and control how much others know about our struggles. And, just like everyone else, we keep our most private moments private.
10. We can’t do it without neurotypical allies. Until organizations like Autism Speaks no longer monopolize the discussion about autism, autistic people will never be given a voice and room to speak about autism. Advances in behavioral and medical science, therapies, accommodations, social understanding, and disability rights are being stalled or halted by these “awareness” organizations which cause tremendous harm to autistic people.
Until our allies stop supporting and trumpeting these organizations, our uphill battles are punctuated with bigger and more pressing obstacles than we should have to mount on our own.
Autistic people need neurotypical allies to be more than just aware of autism, but to accept our differences and see our strengths and weaknesses as unique to the individual. We need your help to find our way into the conversation about autism, which means sharing articles by autistic people and supporting autistic organizations. We need employers and schools to accommodate for our neurological profiles, and individuals to understand how we relate differently.
So, let’s make April “Autism Acceptance Month” and shift the focus to autistic people as thinking, feeling, valuable human beings capable of speaking for themselves and their children. By reading this article, written by an autistic person, you’re off to a great start as an ally. Sharing it would be an even better gesture of Solidarity, and remember to tag @NeuroClastic on social media and hashtag #redinstead so we can see how far our allies have carried our voices.
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“Neurotypical (non-autistic)” isn’t accurate. There are non-autistic neurodiverse folks.
I recognize that you’re trying to keep this accessible for people who aren’t familiar with the terminology, but I don’t think applying a false dichotomy is the way to do it.
Fair enough. I will make an edit to qualify what I meant. Thank you for the accuracy check
Is it okay for me to screen shot the above infograph? I’d like to post it to my social media.
Of course, or right click and save the image! it’s located at https://i1.wp.com/theaspergian.com/wp-content/uploads/2019/04/april-is-autism-acceptance-month1.png
Why are we offended by puzzle pieces? I use a puzzle piece in one of business logos…
Because that’s how Autism Speaks markets the disease of autism, and it implies that we need to be solved and help with putting ourselves together.
Ok. I always interpreted it more along the lines of identifying us ‘as’ a piece of the puzzle. And we just might not always ‘fit’ where they (our NT friends n fam) try to put us.
When I see the puzzle piece symbol, I feel like people are implying that autistic people have a bit of their brain/personality missing (and it’s up to those kind non-autistics to find it for us)
I spit my coffee out reading the last remark! Absolutely brilliant way to express that, and one I wouldn’t have thought of.
The puzzle piece is closely associated with Autism Speaks, and has been chosen by professionals and parents of autistics, not by autistic parents themselves.
There is also the symbolism of the missing puzzle piece, meaning that our mind is missing some themselves.
As someone who is in education and trying to learn more about autism and how to best support my students I’ve always looked at the puzzle piece as the piece “I’m missing” in my understanding, and how I can assist autistic students in blended or mainstream classrooms and activities.
Autism Awareness Month
The haze of blue or rainbow puzzle piece
Shows me your solidarity, your care.
I’m not sure how a profile picture change
Actually makes you more aware.
“In honour of the children who struggle every day.”
Nice sentiment, like, share, post … and walk away.
It isn’t only children, you know.
Do you think we’re cured as we grow?
Awareness and consciousness temporarily raised,
But when you meet me off screen in real life
If I’m triggered, crowded, hot or late you’ll still be fazed
Cracks in the grown up mask of adult, mother, wife.
Playstation games don’t work on an Xbox.
Neither is broken but they each have different needs.
We don’t speak or hear the same language.
We run on different systems, miscommunicating,
But if you cut and mock me my heart still bleeds.
Beautiful poem! I would like to save it if that is okay with you.
I just LOVE this couplet:
[quote] Playstation games don’t work on an Xbox.
Neither is broken but they each have different needs. [/quote]
That’s it, in a nutshell, isn’t it???
I have set up a red “Facebook Frame” at http://www.facebook.com/profilepicframes/?selected_overlay_id=438273963590770 using the @ActuallyAutistic and #redinstead tags
Too bad you didn’t know, way back when you were in school, that the crow is one of the smartest birds. Great post.
I’m a mother to two amazing sons who are autistic but I don’t agree that autism is a disease but I also don’t think autism is their entire idenifier…. I feel likeits part of what makes them who they are…. I use the puzzles not as propaganda for autism speaks but more to cheer my son’s on and we use April to share about all they are mostly because autism is hard for alot of our friends and family to understand and at times there is so much miss information out there… I think you should add truth for those who are nt to understand the uniqueness that is autism and why it’s important to have neurodiversity…
Honestly, even if you use “identity first”, it doesn’t necessarily mean that this is your entire identity. As a comparison (because I don’t really know any other way to illustrate effectively what I mean) you would not insist that a gay man be “a person with homosexuality”, a woman “a person with femaleness”, or a southpaw “a person with left-handedness”, as if these inherent traits are merely extra baggage and not part of the person.
No, it’s not our entire identity. But it is an important and integral part of it.
11. This article does not speak for every autistic person. As an autistic person, I don’t agree with everything in this article. It gives a feeling to me that every autistic person is supposed to feel and think exactly how the article says. I feel like I can’t just be me. I have to either fit exactly into this or I have to fit exactly into the nuerotypical group. It makes me feel sad and hopeless. Nuerotypical people tell me how I should feel and think and groups like this tell me how I should feel and think. What if I’m just somewhere in between? I don’t belong anywhere.
Sarah, you don’t have to feel pressured “fit in”, and you certainly don’t ever have to let anyone tell you how to think and feel. You just have to be yourself to the best of your ability. Trust me, the right people will love and appreciate you for it! One of my favorite colors has always been blue, so I’m not offended at all by the “Light It Up Blue” campaign. If anything, I feel super happy because my favorite color is everywhere! As for the puzzle pieces, my interpretation is that we are all pieces of the great puzzle called Life and no matter how different our pieces may be, there will always a special place where each of us fits perfectly. Maybe you’ll find that place and maybe you won’t, but either way, have fun on the journey and never give up!
Sarah, of course you don’t have to agree with everything this article says. I was simply trying to represent the majority opinion within the autistic community; however, I did take efforts to represent that not every autistic person will agree with these points. If you are autistic, then we want your voice represented here. Please, tell us with what you disagree and we will try to open up a dialogue. This is supposed to be a safe place for you, and if there is anything we love here, it’s freedom of thought and Dissent. Your voice is important to us.
The piece of the puzzle for me always meant we’re pieces in the puzzle of life and that we have the same value as the other puzzle pieces. The implication is that we all can be different, sometimes quite different, but we all fit somewhere, just like everyone else. I have a key-chain with a puzzle piece. It reminds me that I am unique but just as worthy, and that without me, the puzzle would lose its meaning. Now that I have read the history behind the piece, I still like it just as much. I don’t care what stupid, misinformed, asinine drivel they wrote back in the 60s; I care about being able to be me and being valued, just like everyone. We all should feel like we belong; all of us are equally unique.
You want my voice represented here? Good. I hate most of your list.
1. As far as I’m concerned, autism *is* a disease, a disorder, a tragedy, and whatever words you care to use. Please make it go away. I did not sign up for this. How do I cancel my autism subscription?
2. I would LOVE a cure. Autism isn’t part of who I am; it’s an imposition on who I am. It’s what stops me from being who I am. The idea that removing it would somehow make me less “me” is so absurd I actually have trouble comprehending it, no matter how many people say it.
3. To be classified as a “disorder,” it must impair my quality of life? Guess autism is a disorder then, thanks for playing. Also, “medical model” is a straw man invented by overaccommodationists to describe their supposed opponents. Funny you talk about the expressions of empathy – which are not damaging or debilitating – but neglect to mention the sensory overloads, the executive disfunction, the change anxiety, the stimming, and all the other things that definitely ARE clearly bad and disruptive. Not all traits of autism are negative, but there sure as hell are some negative ones.
4. Autism Speaks is dedicated to helping neurotypical people “afflicted” with autistic children (or other relatives). That’s sort of the best way to put it. As far as I’m concerned, autism is a disease that I suffer from. As far as Autism $peaks is concerned, I’M a disease that my family suffers from. Yet it took me way too long to realize this, in no small part thanks to sites like yours who somehow neglect to mention their denial of autistic people’s humanity or the fact that they aren’t really looking for a cure in favor of claiming that the search for a cure is inherently bad.
5. Speak for yourself. Call me an autistic person, a person with autism, or just about any formulation you like. I’ve noticed there’s a certain fundamental disconnect between people who view autism as something you HAVE vs. those who view it as something you ARE, and the distinction between identity-first and person-first language seems like it should describe that, except that everyone who has a strong opinion either way views autism as something they ARE. If there’s a community in which everyone views autism as something they HAVE, I’d love to join but I haven’t found one.
6. The people who can maintain loud public presences are not a representative sample. They tend to be neurodiversity-pushing anti-cure types who, if only society accepted them, would have no meaningful disability (or are so unable to imagine life without it that they wrap their sense of self in it). I’m sure there are people like me who long for a cure and wouldn’t substantially benefit from mere acceptance and accommodation, but their internet presence is limited to a few scattershot comments on the formers’ websites and maybe a blog they haven’t updated since 2013.
7. No disagreement there. If you ignore infancy, where signs of autism are undetectable, I’ve now officially been an autistic adult longer than I’ve been an autistic child.
8. Function labels are about as pointlessly reductive as classifying every single physical injury, disease, or other malady as either “terminal, death expected within three months” or “no treatment necessary, will be better on its own tomorrow.” That said, I’d appreciate it if people could swap the binary of “high/low-functioning” with a scatterplot that covers multiple capabilities because you guys are clearly missing a key slice of the community.
9. Yeah, I get that. Mind you, I’m *currently* the severe case I’m nothing like, but the particulars of my case are a bit much for this comment.
10. I’ll settle for a few autistic allies. I feel like the discussion about autism is a dichotomy between two equally repulsive sides. On the one hand, you have Autism $peaks and its allies, who declare that autism is a terrible affliction that makes me subhuman for having it, and seek to speak over me and deny my basic humanity. On the other hand, you have the Autism Self-Advocacy Network and its allies (which include The Aspergian) who declare that autism is wonderful and lovely and doesn’t make me suffer at all (and if I have suffered, it must be the fault of those ableist scum and not the condition itself) and constantly speak over me whether they seek to or not. Where’s the group that acknowledges that autism is a terrible affliction and seeks to cure it while also recognizing my humanity and letting me speak for myself?
Although I wholeheartedly agree with the notion that acceptance is key and of out most importance, I don’t see that in your social media message. Rather, I see an anti Autism Speaks campaign. What does acceptance look like? What can I do to spread and facilitate acceptance? Again, I do not support the organization and personally feel that 1 month of anything isn’t enough. However, in defense of “awareness” … it’s not all that bad. Awareness precedes acceptance & people 1st need to be aware that autism & autistic people exist before they can accept anything. Let’s promote awareness, acceptance, knowledge, and respect !!
“I don’t see that in your social media message. Rather, I see an anti Autism Speaks campaign. ”
Does seem that way.
My daughter is Autistic, it makes her life very hard. Harder than it is were she not autistic.
If I could click my fingers and rid her of it I would.
Just as were she blind; if I could grant her sight I would, so too would I remove her autism.
It does not improve her quality of life in any way.
Yes it makes her who she is, being born with no legs makes you who you are, should you then refuse prosthetic legs?
Why then would you not want to rid the debilitating condition that is Autism?
How does it make her life hard?
Prosthetic legs does not change the fact that someone has no legs. There are no nerves or muscles or living tissues in those prosthetics. The legs are an accommodation.
A limb is not necessary for life, nor does it make up a character or personality or spirit. The mind does. You can’t “cure” autism because that would require a full brain transplant. If it causes difficulties for the person, then you should accommodate it just like you would with prosthetic legs. The accommodations should be tailored to the individual.
“How does it make her life hard?”
Here is a list of some everyday normal things that she either has trouble with, cause her anxiety or that she simply can not do.
Not all are a symptom of Autism, some are however exacerbated by it.
Riding a bike
Using a scooter
Throwing and catching
Sports, all sports
Clothes feel tight
Clothes feel itchy
Clothes are too hot
Labels in clothes scratch at her
Has no sense of direction, gets lost easily
Trouble understanding body language and facial expressions
Trouble maintaining eye contact
Normal noises overwhelm her (shops, classrooms, the street, cinema, restaurants, museums, etc)
Doing a routine everyday thing without many constant reminders
Her tone can seem very aggressive at times, to the point people think she is being rude/unpleasant/angry
Changes in routine
Changes to planned changes in routine
Understanding things from another persons point of view
Compromising in certain areas
That is just a few that spring to mind.
There’s really nothing on that list that I haven’t struggled with. But, here’s how I remember them:
My parents forced me into clothes I hated and that felt uncomfortable to me. I desperately wanted to impress my father, more than anything in my entire childhood, but I never was good at sports. I didn’t even like sports, but that’s what he wanted me to be. I couldn’t read well until I was in 5th grade.
Mostly, I remember my childhood as being the apple of my grandfather’s and grandmother’s eye (they are deceased, but I’m sure they were both autistic) and being a constant disappointment and frustration to my parents. I understood things from my grandparents’ and brother’s point of view, and that of other autistics, but they couldn’t understand my perspective. I get lost easily, too.
Here’s what I’d suggest (in no order):
-buy clothes with no tags or scratchy seams
-use words instead of body language
-understand that you can’t understand things from her perspective, either. That’s a two-way street
-there are areas in which she compromises easily that you don’t
-it took me a long time to ride a bike, use cutlery, read, and write
The tone thing might or might not get better with age. People often think I’m being rude when I’m trying to be quite kind. I have all the words, but I can’t put them together in the same way that NTs expect. When NTs know I have autism, they need to just know that they can take my words at face value without any tone or subtext. I still can’t get into a routine without constant reminders, either. But, I do amazing things that you can’t do, either. I didn’t realize what all I could do until I was independent, though, and able to function without someone trying to encourage me to be someone I’m not all the time. An autistic person is not a broken neurotypical.
Einstein had a hard time with cutlery and was very late to talk. He did poorly in school and especially in gym class. He was extremely clumsy.
EXACTLY. Autism is something my son didn’t sign up for. It makes his life difficult. It makes it more challenging to be his parent. I love him with all my heart and I’ve learned that some things will take longer for him to learn (if ever.) But if there was a pill, treatment or magic wand that would help him I would use it in an instant!
If there was a pill or serum,I would come up with a plan to destroy it and any information on how to fabricate it, and even eliminate the scientist(s) if I have to
Autism is a gift AND a burden for me
Regarding #3: can you unpack who “overaccommodationists” are in this context? The only Google hit for the word was this comment itself, leaving me none the wiser. How, in your opinion, do you “overaccommodate” someone’s needs?
My daughter was diagnosed with ASD and I’m involved with a local chapter for autism support made up of adults with autism and/or their children. Oddly, from my conversations with them they would completely disagree with all of this article.
In fact the majority HATE being called autistic and want to seen as a person first – a person with autism.
Additionally they’ve been hoping and fighting for awareness – of autism itself, of the challenges and of how they are contributing members of society.
I’d continue but my thumbs are getting tired.
It’s weird to me that all these neurotypical people tell us about the autistics they know, and yet none of us ever meet them…
Our pet peeve: Autistic kids are not “lucky” their parents love them. They are worth being loved as much as other kids are.
True, but they are fortunate to have parents who don’t hate them for being”an emberrasment to their parenting reputation” and”a waste of time and money and resources”
Every child whose parents love him/her is lucky.
Not very child is lucky enough to be loved 🙁
PLEASE, NEVER call me as ‘aspie”. I would never do it to anyone else. We are not defined by being diagnosed with Asperger’s like tendencies. We are all as different from each other anybody else.
YOU think I’m weird for not wanting to kiss you — I think that you are weird by wanting to kiss every person you meet.
You think I’m weird by finding loud and discordant music physically painful – I think you must be deaf to even tolerate it.
You think I’d weird for hating crowds — I think you are weird b for loving crowds.
You think I am weird for not wearing make-up — I cannot understand why you wear make-up. It is ugly and stinky.
I am an adult with my own likes and dislikes. I am not disabled, or needing treatment or pity and especially NOT condescension.
This is the first time I ever realised that those four jigsaw puzzle pieced had anything to to with Autism. It is probably no more stupid that so many other logos.
ME — I’m just a piece that doesn’t fit into common posting boxes 🙂
Would all the hateful bigoted vapid superficial closed-minded ableist “parents” in the comment section just get the hell out of here and go back to the anti-vaxxer Facebook groups where you crawled out of? You people make me sick. If my parents were anything like you I would have run away early on. I hope you lose custody of your kids and they end up finding someone better to take care of them. YOU assholes are to blame for your kids’ “suffering”. Fuck you!!