One of my rules of thumb for inclusive systems is “acceptance over awareness”.
Awareness focuses on deficits and made up ideas of normal. Awareness reinforces the deficit and medical models. Awareness is inspiration porn and the “ableist autism warrior parent” archetype. Awareness is the segregation of special. Awareness is more of the same, and, for many, that means more years of burning out attempting to pass as neurotypical.
My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people’s insights, feelings, and desires into account, instead of dismissing them.
A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.
Acceptance, however, is universal design, valuing whole people, and inclusion. Acceptance is structural change to ableist, exclusionary systems. Acceptance is the social model for minds and bodies. Acceptance is neurological curb cuts and generative neurological pluralism. Acceptance is equity literacy. Acceptance is the freedom to learn and think and socialize differently, without being pathologized.
Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person’s identity, rather than a problem that needs to be fixed. Acceptance means helping to create a world where autistic people don’t have to camouflage themselves as neurotypical. Acceptance also means giving supports and accommodations to autistic people of all abilities and support levels when it’s asked for and needed. If the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems autistic people have can, in many cases, be lessened.
There is no path to acceptance and inclusion that does not involve a direct confrontation with injustice. Yet another awareness campaign is not acceptance, far from it.
Awareness means we know what is hard for us. As we grow up autistic we are measured against the yardstick of “normal” in many ways over and over. Thus, autistic children often have a keen sense of who they are NOT. This deficit-based understanding may be necessary in the diagnostic realm, but it does little to support a healthy lifestyle. Who we ARE in this world – our abilities, strengths and interests – provide us with a satisfying life because that is the way it is with human beings. And yes, autistic people regardless how autistic they may or may not be, are ALL human beings. This means ALL autistics have intrinsic value.
Awareness focuses on the deficits – on understanding the deficits of the autism diagnosis – which leads to general assumptions by society of a substandard, less than group of people and it spirals downward from there, as we all have seen in today’s status quo autism rhetoric, stereotypes and assumptions. Awareness extends a hand the erroneous idea of a flawed group of substandard human beings. Awareness often provides the fertile soil supporting the growth of inspiration porn about our tribe.
Acceptance focuses on autistics rather than on autism. And yes, there is a difference. Autism is our diagnosis; it is about what is hard for us. Autistic is who we are as autistic human beings; being autistic is about who I am in this world, how I function and what I contribute. Acceptance lends itself to ideas of equality, the premise of different rather than lesser creatures. This can lead to an upward spiral towards embracing concepts such as neurodiversity, inclusion and universal design.
For society, when awareness is the focus – society understands the deficits and which, when unbalanced with the humanity of autistics, often result in a hopeless and burdensome feeling. I believe when autistic acceptance becomes society’s focus we will shift to looking at abilities, strengths, interests of autistic individuals, which will then allow us our place in the fabric of society – as actually equal human beings.
So, at this point in time, as a society we have mostly Autism Awareness, especially during the month of April. We also do have a tiny wee bit of Autism Acceptance, mostly from autistic people themselves and their allies. When society is focused on Autism Awareness deficits of autistic people and inspiration porn about them are highlighted. When society is focused on Autism Acceptance strengths and abilities of autistic people are highlighted.
The more we learn, the more we understand each other. When we move beyond the made up idea of “normal”, inclusion is no longer a “task”.
Besides the inclusion of Autistic students in schools, Universal Design is also about a mentality of acceptance. It is about valuing the whole person, including the person’s neurology.
Universal Design, inclusion in education, employment and environment would not only be beneficial to all students, it would make navigate a sometimes hostile-to-our-senses environment easier, better, possible.
Universal Design and Autism Acceptance are related when one modifies the environment and the practices in order to benefit everyone, instead of trying to change the Autistic brain.
Acceptance and Universal Design don’t require people to have superpowers in order to succeed. Our value is intrinsic.
It is April again. The month when Autistic anxiety increase is directly proportional to the “autism awareness” marketing strategy.
All this comes attached with the Autism Awareness Month reminder.
All this also brings the stigma, the fear mongering, the bias, the pity porn, the hate towards Autistics.
All this elevates the voices of non-autistic parents (often times martyred parents) and professionals, while silencing our voices.
Our anxiety increases, we use most of our energy to send this simple
message: “we are here, we are human, listen to us”.
It is extra draining in April because “awareness” is so loud and scary, we need a lot more strength. The organizations that raise money by using fear of our neurology, double down on the hateful rhetoric. It stings harder, it cuts deeper, it hurts more.
Awareness says: Here is your child. Unfortunately this is a defective child.
Maybe, if you work with this kid hard enough, you will be able to have at least a tiny taste of the joys of parenthood. You will need a lot of money. I am sorry for you. Good luck, don’t expect too much.
Acceptance says: Here is your child! Congratulations!
Awareness says: This is the list of all of your child’s deficits. Good luck, I am so sorry.
Acceptance says: Here is a list of things your child might do differently. Since Autistic brains process things differently, the best approach is to listen to, and observe the child, making necessary accommodations for her to achieve full potential.
Awareness says: Your child cannot understand human feelings. Your non-verbal child will never say “I love you”
Acceptance says: Your child processes feelings in a way that might seem odd, but the feelings are real. The love received will come back, sometimes in a non-speaking way.
Awareness says: Correct those behaviors! Fix this mess! Acceptance says: Behavior is communication. Understand and respect.
Awareness says: Don’t trust the adults who “have autism”. They are too “high-functioning” to understanding the heartbreaking struggles of “real” autism.
Acceptance says: Everyone struggles. Seek your community/your child’s
community for input.
Awareness says: Those “low-functioning” people “with autism” cause too much pain. Burdens! Poor parents!
Acceptance says: Everybody has something to offer and do contribute when supported.
Awareness says: Beware of autism! It will cause havoc in our lives! All these people! How tragic!
Acceptance says: Diversity! Neurodiversity enriches our lives.
Awareness says: Donate to the awesome organizations that have all the pretty puzzle pieces and all the pretty blue lights!
Acceptance says: Support, include everyone!
What has the awareness walk done for Autistics and their families? – Nothing.
The money raised will not come back to the community as services. It never does.
If you still want Autism Awareness you are part of the problem. The world is so “aware” of us, it fears our existence. Is that what you want for your loved one?
Because some Autistics already experience acceptance and they are thriving.
Families that practice acceptance and embrace neurodiversity are not fighting the Autistics they love, they are fighting for what will translate into success.
Meanwhile, Autistics are really helping the community, under the word ACCEPTANCE. Autistics helping Autistics (with the support of true allies).
You can choose awareness, you can feel “blue” and throw your money in the pockets of hateful and powerful people that might offer help, but instead deliver sorrow, or you can move forward, not in circles, knowing that your money will be used to really help someone and build a more accepting world for the future generation of Autistics
You can choose to be aware of autism and beware of Autistics, or you can choose acceptance and opportunity for all Autistics.
Awareness is not respect.
Awareness does not help.
Awareness is walking in circles, always ending where you started.
“Acceptance is an action.”
Autism Acceptance Month takes place every year during April. The first Autism Acceptance Month celebrations were organized by Paula Durbin Westby in 2011, as a response to traditional “Autism Awareness” campaigns which the Autistic community found harmful and insufficient. “Autism Acceptance” as a concept has a history as long as the Autistic community itself, dating back to Jim Sinclair’s seminal classic “Don’t Mourn For Us” and perhaps most visibly popularized by Estee Klar’s “The Autism Acceptance Project.”
Source: Autism Acceptance Month
First, when talking about disabilities, we should promote acceptance.
Acceptance, because we all have rights that must be respected. “Awareness” often brings an undesired side effect of pity, and depending on what organization is promoting it, a lot of misinformation and pain to the disabled people supposedly benefiting from the campaign (Autism Speaks being the perfect example of this abusive practice).
Second, “Awareness” campaigns are usually planned by non-disabled people, with a non-disabled perspective. The intentions are generally good but the unintended consequences are sometimes silencing and damaging.
When non-disabled people, or advocacy organizations, make the decisions about how the awareness campaigns (or their advocacy efforts) are going to be run, and they don’t listen to what disabled people have to say, the message can be a mistaken one.
Instead of awareness of what access needs, accommodations and means to utilize our strengths, the focus becomes our perceived deficits, how “hard being disabled is”. In some cases, the focus shifts to our families, usually with a damaging rhetoric (if the organization is – again – Autism Speaks, the damage and hurt are enormous).
There are seemingly subtle, but important, differences between “awareness” and “acceptance” campaigns.
The history of the Disability Rights Movement should be taught in all schools. It is vitally important that leaders with disabilities are accurately represented in history and sadly, right now, there seems to be more in schools about “Disability Awareness” than the social justice component of fighting for access and inclusion. If you are a parent of a child with a disability, start learning about Ed Roberts together now. You can read Henry’s take on that here.
Source: Thank You Ed Roberts
Awareness is people talking to you.
Acceptance is people respecting you.
Awareness is that high-pitched, baby voice.
Acceptance is speaking in a normal tone.
Awareness is being invited to the table.
Acceptance is making sure that you can reach everything on it.
Awareness is acknowledging that you have autism.
Acceptance is acknowledging that you are autistic, and that that fact alone makes you more knowledgeable about autism than any non-autistic person.
Awareness is doing science.
Acceptance is doing good, solid science, science that will be able to be replicated and proven and published, science that genuinely helps people, science that has implications for the future, science that is not just good in itself, but is doing good.
If you want to conduct a research study, you need to make sure that you are not just aware of autism, because being aware is not enough. You need to accept autism, and you need to respect the study participants as capable adults.
Every April, parent- and professional-led autism charities ask their supporters to spread awareness by lighting buildings and monuments up blue, wearing blue clothing, and pinning puzzle piece lapels to their shirts.
This does nothing to address the very real practical issues that we face. Instead, the substance of these campaigns more often spreads fear and promotes harmful stereotypes. Autism Speaks, the organization responsible for the Light It Up Blue campaign, describes the current generation of autistic children, adolescents, and young adults as a public health crisis and burden on families and governments. Over the long history of the puzzle ribbon, it has often been associated with a belief that autistic people are missing pieces, which must be found so we can be made whole. With this context, many of us see puzzle ribbon bumper stickers and blue lights on our city’s landmarks as signs of hate, not support.
It seems that every time that an Autistic person says “I don’t want your awareness“, someone else comes along and says that without awareness, we’ll never gain acceptance.
That is such a ridiculous argument.
It wouldn’t be ridiculous if autism awareness campaigns spent time focusing on making society aware of what can be done to accommodate us. It wouldn’t be ridiculous if autism awareness campaigns showed us being who we are: People who are different from many, but people nonetheless.
But autism awareness campaigns don’t focus on those sorts of things. They focus on the problem that we create for our families. Campaigns focus on how many of us there are. They focus on how much we cost. Awareness talks about us as a problem which must be solved.
People don’t accept problems. They fear them. They try to fix them.
Can you imagine what it feels like to be seen as a problem?
To rephrase, acceptance is about seeing my son, and his autism spectrum-mates clearly: as fellow glorious, imperfect, deserving human beings, and not as “puzzle pieces,” burdens, or cure-bait. Yes, autistic people need supports, and some need intensive supports. But so will all non-autistic people who live long enough, or whose life circumstances change to include disability. Don’t we all expect to have our needs understood and accepted, whatever those needs may be? Autistic people’s expectations are no different; what differs is whether or not society recognizes and accepts autistic needs.
I have to emphasize that acceptance is not a matter of convenience, inclination, or choice; for my son and other autistic people, it can be a matter of life and death. Recent research indicates that autistic lifespans are significantly shorter than those of non-autistic people.
Why? Mostly for co-occuring medical reasons like epilepsy, but often due to suicide. And what factors contribute to the kind of hopeless that leads to suicide, for autistic people? Could it be … hmm … a lifetime of PTSD due to having one’s needs dismissed and disrespected? Could it be having all one’s autistic “behaviors” quashed or punished instead of compassionately investigated? Could it be the stress of being overlooked and undiagnosed, or told one is “not really autistic enough” for services — even thought it is well documented that autistic people often struggle to remain employed, and need accommodations and supports for many aspects of “adulting“? Could it be … constant exposure to Autism Speaks-led messaging about how autistic people are diseased burdens? Could it be messages from widely-praised autism books that describe murders of high-support autistic people like Leo as “mercy killings”? Could it be the ceaseless “April Autism Awareness” negativity that scares the crap of autistic people themselves?
Our society needs to do better by autistic people, and we can start by ensuring that our messages about April and autism focus on supporting, and loving autistic people for who they are, as part of our families and communities.
Acceptance means autistic people matter. Awareness just means we know autistic people exist. Awareness doesn’t draw any distinctions between epidemic-mongering, pseudo-science-promoting parents publicly embarrassing their autistic children, and autistic people themselves speaking up for better recognition and inclusion.
And here is where promoting acceptance can make yet another difference: when people start asking questions about autism for the first time, and are searching for information, do we want them to find resources that terrify them and send them spiraling into despair-fueled cure-seeking, or do we want resources that help them better understand what autism means, and how to help autistic people — and their families — live the best lives possible, so everyone wins?
- Free, life-changing, and available to everyone. Provide freedom to those who deal with a world that’s built to be hostile toward them.
- “Timeless Learning” on the Biodiversity and Terroir of Learning
- Mindset Marketing, Behaviorism, and Deficit Ideology
- Equity Literate Education: Fix Injustice, Not Kids
- Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life
- A Triptych of Triptychs for Designing for Neurological Pluralism
- Classroom UX: Designing for Pluralism