What is “autism awareness” all about? What are people trying to spread “awareness” of? Some forms of awareness that can be found in mainstream circles (i.e. being propagated by certain big autism “charities” or organisations and among certain groups of parents and professionals) include being aware that:
Autism is a disordered, tragic, challenging and burdensome thing
We desperately need to help autistic people and their families (most often the emphasis is on the parents) who are “living with” this autism affliction
This “help” can be achieved through donating to and supporting certain organisations (e.g. Autism $peaks) geared towards finding a “cure” or at least various ways of “treating” and “ameliorating” autism.
All this (besides the first one) is a load of ableist bull-crap, quite frankly. Autistic people have been calling this stuff out for years, if not decades. Yet still, it persists.
Here are 4 key things that autism awareness should be about:
Yes, that autism exists. But, this is a very basic first step, and one that has mostly been achieved (at least in the developed world). Still, I do think it would be nice if more people had “neurodiversity” on their radar, especially when meeting people for the first time who might appear different. The important thing, though, is that people have good information that is going to help the position of autistic people in society. Sometimes ignorance is better than the wrong sort of awareness.
Autism is a neutral difference, where positive and negative aspects are highly dependent on context (especially the sensory and social context). Autism is not a disease, disorder, nor even a condition. It just is. Much like non-autism just is.
Autistic people are human beings that deserve the exact same rights as every other human being. This is the essence of the neurodiversity movement. (And this is why I fail to understand the perspective of those who “oppose” the neurodiversity movement, which is essentially equivalent to opposing equal rights for all. But then again I suppose that explains the ubiquity of straw-man arguments against it).
Because we are a neuro-minority in a world not catered to our needs or preferences, we often experience autism as disabling. As a result of this we require extra things that others do not have, i.e. supports and accomodations (but what some may write-off as “special treatment”). It is our right to have these things too, even though the majority of people in the world do not need them. This is because these “extra” things often support or are even what enable our basic rights to be met.
Most of the things we should be talking about and aiming for this month (and every month really) have more to do with acceptance than awareness. This is why many in the autistic community support a renaming of April to Autism Acceptance Month. We haven’t got there yet… which is why it’s important that we keep talking about it.
Most people are aware of autism. Even if they are not, much of the awareness that is being spread around probably isn’t going to help them towards becoming the sort of aware we might want them to be. Some awareness campaigns are empty of significant substance that would actually help educate and spread real understanding. Others are actively backwards and harmful as described above.
Below, I’ve created a list of 30 things I wish the world could know about autism and the ableism that too often surrounds it – one thing for each day of Autism Acceptance Month. The list is geared mainly towards allistics and potential allies of the autistic community. As it will hopefully demonstrate, it is not so much autism that is in need of public awareness, but the ableist attitudes and practices that people often attach to it. As a society, I think we are more in need of Ableism Awareness Month than anything else at this point (see Erin Human’s post series for a great primer on this).
And, of course, it would be great if people didn’t stop at mere awareness of these things, but took actual steps to act on this stuff in day-to-day life. We can spend time endlessly trying to spread around progressive rhetoric (in the hope people will listen), but ultimately we want the ideas behind this rhetoric to become embedded in the collective mindset and reflected in everyday behaviour and practice.
You can also check out the Twitter Thread for these 30 steps: https://twitter.com/SianIsAt/status/1111599117275484160
And a YouTube video I made on the topic: https://www.youtube.com/watch?v=P6ptTiPjWRY&t=5s
30 STEPS FOR AUTISM ACCEPTANCE
- BEWARE AWARENESS: People are generally aware of autism. We have awareness. Awareness can also be really bad and dangerous. Sometimes ignorance is a better alternative. Really, though, we need #AcceptanceNotAwareness and #AutismUnderstanding
- ABLEISM ALERT: Does awareness help #ActuallyAutistic people? A lot of our difficulties stem from ableism which may stem from the wrong sorts of awareness. We need Ableism Awareness Month. For a primer check our Erin Human’s post series
- AUTISM SPEAKS (STILL) SUCKS: Despite attempts to clean up rhetoric, not much has really changed. The NT-run “charity” claims to speak for autistics, but achieves quite the opposite, shouting over or ignoring autistic advocates especially #AutismSpeaksDoesNotSpeakForMe #AutismSpeaksForItself #BoycottAutismSpeaks
- #LIUB IS NOT A MEANINGFUL ACTION: It does nothing to actually help autistic people. It only promotes “awareness”, and often misguided awareness (read: fear-mongering) given the links to Autism $peaks. #RedInstead #LIUR #LightItUpGold
- AUTISTIC ADVOCACY: Good alternatives to Autism Speaks are autistic orgs like ASAN, AWAN, Autistic UK, along with hundreds of individual advocates. Autistics are not limited to self-advocacy, we should be running the whole show. #AutisticsRise #AutisticApril #iamanadvocate
- AUTISTICS SPEAKING: We have a lot to say. We are the real experts on autism and on ourselves, so a lot of that stuff is very valuable. Seek out our voices, learn from them, amplify them, don’t drown them out with your own. #WeAreLikeYourChild
- WHERE CAN YOU FIND US?: The autistic online community is thriving. Find us, listen to us, ask us questions at #AskingAutistics or #AskAnAutistic. Try #ActuallyAutistic Twitter, Tumblr and YouTube or the vast autistic blogosphere. You can check out my resources page for a place to start.
- DIFFERENT NOT LESS: Autism is not being broken, it’s a different way of experiencing and being in the world. Disorder, deficit, dysfunction, disease, etc should not be OK terms to use. Stop saying them and start calling out others who use them. #PositiveAboutAutism
- DOWN WITH BINARIES, BOXES AND LINES: Autism is autism. There is far more that unites us than divides us. Diagnostic divisions are kind of arbitrary. Nor are we “fixed” at certain points along a (mythical) spectrum. An autism “constellation” or “colour wheel” is a more appropriate metaphor.
- FUNCTIONING FAIL: To call someone “high” or “low” functioning is arbitrary, archaic and highly ableist. “Is that NT high or low functioning?” – this question doesn’t make sense, nor should it for autistics. #FunctioningFluctuates. Plus, “functioning” often reflects ableist norms.
- EVERYONE COMMUNICATES: Not speaking is not the same as having nothing to say. Some of us communicate via alternative means like typed words. All of us – speaking or not – communicate non-verbally and through behaviour. Just because it’s not your native language doesn’t mean there’s no message. #BehaviourIsCommunication
- WHAT IS AUTISM EVEN?: Most think of autism as a “social communication disorder” and stop there. But social behaviour doesn’t exist in a vacuum. Socialising is sense-making, meaning social behaviourial differences are the product of perceptual differences. Perception → Cognition → Behaviour. Autism is a set of sensory perceptual differences at root.
- SENSORY IS CORE: What would autistics benefit from most? Social skills training? Not really. ABA? Really not (see 14). Sensory perception is fundamental to how all of us experience the world. For many autistics, perception is INTENSE, and so low arousal environments are often a big help above all else. #Sensory
- ABOLISH ABA: Given our heightened sensory-social sensitivity, intensive in-your-face behavioural intervention is the very antithesis of what we need. It is also unethical, teaching us our bodily autonomy is not our own and geared towards normalisation #ABAIsAbuse #YesThatABAToo
- BIOMED IS BIGTIME BS: Quack, quack, quackery. These “treatments” are expensive, time-wasting, unnecessary, illogical, probably illegal (or should be), immoral, abusive, painful, and potentially fatal. Please stop. #Autism #Biomed #Quackery #AutismAcceptance
- A CURATIVE FOR “CURE” MENTALITY?: You can’t cure or prevent autism without being a eugenicist, i.e. without destroying the person you started with. There is no removing autism once it already exists. In future, society may develop a way to prevent us from existing in the first place. But is this a future we want? It sure isn’t the future we want. It shouldn’t be what you want either. Surprisingly enough, we want quality of life, not to not exist.
- LANGUAGE MATTERS: The words we use are important. They lay the foundation and they have a very real impact. Rhetoric shapes representations, shapes thoughts and feelings, shape actions. How we talk about autism is critical. Unsure what words to use? Simply follow the lead of autistic people.
- USE IDENTITY-FIRST LANGUAGE: Autism is a defining identity, not an appendage to an otherwise “normal” person. IFL is the majority preference of the autistic community. This deserves to be respected. Allistics should not get a say in this. You can read more about more thoughts on this here.
- INTERSECTIONALITY ISSUES: Autistics come from as wide a variety of backgrounds and groups as non-autistics. We are every age, gender, sexuality, race, culture, class and disability type. It would be just too convenient if we were all cis white middle class males. Occupying multiple positions of marginality usually means less visibility, more ableism and more disadvantage in life. We need greater awareness of and action against intersecting systems of oppression. #SheCantBeAutistic #RacialisedAutism #NeuroQueer
- REMAKING REPRESENTATION: Autism has traditionally been seen as the domain of white middle class boys. Just because some of us get more visibility than others, doesn’t mean the rest of us don’t exist. We need to up representation of autistic adults, autistic females, trans and non-binary, autistic people of colour, and autism across a wider range of classes, cultures and countries. #SheCantBeAutistic #RacialisedAutism #NeuroQueer
- WHAT NOT TO SAY: If someone is telling you they are autistic, pay consideration to your response. What would you want to hear if it was you? Avoid pitying, condensation, contradiction, minimising, unsolicited advice. For some specifics of what to perhaps avoid saying, see here.
- THE TRUTH ABOUT VIOLENCE: This is something that is done to us far, far more than something that is done by us. Media and popular representations around autism and violence are often highly erroneous and damaging. In actuality we are a group that is highly vulnerable to abuse. Moreover, this abuse is more likely not only to be ignored and accepted but even celebrated. This needs to change.
- NOT ALL STAKEHOLDERS ARE EQUAL: Autistic people matter the most in debates about autism because it is our own lives at stake. #NothingAboutUsWithoutUs, yes. But also we should push for more, to be leaders, not just included in the status quo. Our representation, voices, needs and preferences should be first and foremost.
- “CIVILITY” CAN BE A BARRIER: We’re talking about our rights here. Having them granted to us shouldn’t have to depend on our asking nicely in accordance with the rules of respectability politics. We shouldn’t even have to ask. Turns out, we’re having to fight. In the words of Autistic Hoya we need our “shoes off, and fists up”.
- SOCIAL MODEL: To a large extent, disability (to be distinguished from impairment) is located in wider social structures and attitudes. This is to say that many of us would not be or feel disabled in an autistic majority world that would likely be adapted to our needs. The (sensory and social) environment is perhaps the most important thing to pay attention to.
- WHAT’S CO-OCCURRING?: What many of us struggle with most are mental and physical/neurological conditions that commonly accompany autism. We need research, services and interventions to help with these, not with “treating” autism itself.
- SOCIALLY DIFFERENT NOT DEFICIENT: Social connection can take many different forms. For example, socialising can take place through silence. One way is not necessarily better than any other. Neuro-bigotry is asserting that one way is the only way and the best way.
- EMPATHY IS A 2-WAY STREET: Rather than a ToM “deficit” located within the autistic mind, social difficulties in autism are perhaps best explained by the mismatch in ToM between neurotypes. NTs seem to struggle just as much with Theory of Autistic Mind. I’d highly recommend Damian Milton’s work on the double empathy problem for more on this.
- APPEARING ≠ FEELING: Autistic people are not unfeeling, emotionally immature or delayed. If anything, we often feel more and perhaps more complexly. We certainly experience and express emotions differently. This isn’t the same thing as not having them. Our outside may not match what’s inside in a way you might expect. Don’t judge us based on appearance.
- WE ALL HAVE EQUAL INTRINSIC WORTH: Worthiness as a human being is not dependent on being able to speak, on being “independent”, on being employed, on being in a relationship, on being “just like everyone else”. Just being is enough.