April is all about autism acceptance for me, and also for most of the autism families and autistic people I hang with. Why the focus on acceptance, and not merely the "awareness" so many autism organizations push all April long? As I wrote last year:
"Why acceptance? Because autistic people like my teenage son Leo deserve the love and respect that come with acceptance, not merely acknowledgment that autism exists. Awareness is passive. Acceptance is a choice."
Photo Credit: Shannon Des Roches Rosa.
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.
This month brings many excellent options for participating in and sharing the word about Autism Acceptance:
- The Autistic Self-Advocacy Network's Autism Acceptance Month project
- Autism Women's Network wants you to Help Make April Amazing!
- Autism Acceptance Day and Month, from Paula Durbin-Westby
- Thinking Person's Guide to Autism is featuring autistic voices all April long, talking about Why Accommodations Matter
- The #AutismMeans April event series, via @AutismMeans, on Twitter
- The autistic-led #WalkInRed campaign counters Autism Speaks's Light It Up Blue efforts (this year with #RedInstead) for example:
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.
Autistic people need to know that the people in their lives will be there for them, and help them if they need help -- when things get unbearable, or other people are ableist asses. That no one wants to stress them out more than the rest of the world already does. That other people will do their best to listen and understand if communication is hard. That people won't second-guess requests for accommodation. That people won't talk over them, hurry them, get impatient with them when they are functioning at the speed that they need to. That their preferences and needs don't have to make sense to non-autistic people to be valid. That they are accepted.
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.
But we do need to acknowledge that discussing "Awareness versus Acceptance" implies conversations about autism and autistic people are already happening in our culture, or community -- which is not always true. As the Mocha Autism Network's #RoyalBlueForAutismAwareness campaign reminds us, there is still a great need:
- To provide information regarding Autism to communities that are usually underrepresented in most major campaigns via peer to peer social media sharing
- To eliminate the stigma associated with Autism Identification and assessments in those same communities
- To provide resources to communities through links, stories and articles that would help our communities
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?
I want everyone to win. I want my son to win, I want my autistic friends and their families to win, and I want every autistic person who has been traumatized by lack of acceptance to start winning, too. That can only happen if we do our best to embrace Autism Acceptance.
More from living