Awareness v. Acceptance: Does It Matter? Article for PACLA Magazine @Aut_Love_Accept

19 Apr
April 19, 2014

I wrote the following article for the very first edition of  Parenting Autistic Children with Love & Acceptance (PACLA) Magazine! If you haven’t visited PACLA before, head over and check them out on Facebook and follow them on Twitter @Aut_Love_Accept. Being April, Autism Awareness ACCEPTANCE month, I thought I would share a little more on the subject, this time with a huge shout out to PACLA for all the great work they do!

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Autism Acceptance

What does it look like exactly: Autism Acceptance? Awareness has always been the headliner, but honestly I think we’ve moved well beyond the whole, “This-is-what-autism-looks-like-so-be-aware” campaign. It has to be about acceptance now.

Accept – to receive willingly; to give admittance or approval to; to regard as proper, normal or inevitable; to make a favorable response to; to recognize as true

When I look at those definitions, all pulled from Merriam-Webster’s, the two that resonate with me are ‘to receive willingly’ and ‘to recognize as true.’ Now consider those words in conjunction with autism. When we advocate for autism acceptance it is because we want to be received willingly and recognized as our true selves, just like our non-disabled peers.

Autism acceptance means you accept the entire person as they are: boy, girl, tall, short, silly, serious, graceful, clumsy, stimming, still, echolalic, non-speaking, special interests, disinterest, contentment, meltdowns, etc… the whole person. Life is not a salad bar you don’t get to pick and choose. It’s all or nothing, every strength and weakness, every success and failure… everything that makes us who we are. Just as you would with our non-disabled peers, because like them…

Everything about us makes us who we are.

  

Old News

This whole milestone check, striving for ‘normal’ and comparing children with one another is an outdated and damaging concept. I’ve asked professionals before why they would compare my disabled children to non-disabled children, only to be met with a blank stare at my perceived ignorance. My guess would be their incredulity at me not wanting my children to be ‘like everyone else.’ Don’t I want my kids to fit in? Don’t I want to take whatever measures necessary to help them blend? What I believe they are trying to get at is whether or not I want to condition and reprogram my children so society will not know they are, dare I say it… different.

Uhm… No thanks. We’re all good here.

If you continually chart the progress of Autistic children using non-Autistic measurements and goals, they will generally miss the mark (or score off the charts). And this is not because our children are incompetent or not capable of success but because the odds are stacked against them. Why? For the very same reason non-Autistic kids would miss the mark if measured by Autistic standards: We are made up of two very different neurologies. We experience things – thinking, learning, feeling, interactions – too differently to be ‘samed’ with non-Autistic peers.

 

For the Love of Neurodiversity

Including me, there are four disabled people in my family of five, three of whom are Autistic. The idea of ‘normal’ with its bland soullessness is a joke in our home. It’s what we strive not to be. We are fortunate enough to find ourselves in a time where neurodiversity is an acknowledged concept – by the folks in my community anyway – and that an internet search of the Neurodiversity Movement will come up with 236,000 hits. It is exciting for me to share this information with my kids exclaiming, “Yes! That’s it! That’s us!”  We are not defective, damaged or disordered.

We are neurodiverse!

 

Enter PACLA

I’ve only used social media for a little less than a year. I’ve always been scared to death of being that exposed to people. However, once I got into it, I was hooked. I met so many Autistic people and our supporters via Twitter and it was beautiful! I was never judged or ridiculed, I have been corrected a time or two, but I always own my ignorance and am thankful to learn from it. Twitter was so welcoming I decided to try Facebook (FB) a few months later.

I actually found PACLA by accident a few months ago through another FB group. I am not in many groups because I find the FB interface makes me anxious. The graphics are overwhelming and I find that I can’t follow threads very well because my brain tries to take in everything at once: Private messages, threads, ads, requests, pokes, etc… It feels as if I’m in a room and I have ten different people talking to me on ten different topics and they all want ten different answers right away! It causes tremendous anxiety at times. I often think that I’m glad no one can see me considering a meltdown from looking at a computer screen!

But that’s not what this article is about. This is…

I am an autism acceptance advocate and when called for, activist. While autism awareness continues to be the loudest voice, I generally avoid the groups that focus on it. In addition, I want a group with an Autistic voice. I’m not saying all moderators have to be Autistic but there has to be some. Oftentimes it’s actually non-Autistic people doing the talking about us with little to no Autistic input, and that will never do…

Nothing about us without us!

Don’t misunderstand me, there are a great number of non-Autistic people whose support I am grateful for, but we also have a great number of Autistic people that need to be heard and PACLA provides a platform to share.

 

PACLA’s Commitment to Autism Acceptance

PACLA is a safe space where Autistic people are respected, their perspectives valued and their personal experiences appreciated. The gorgeous banner that heads their FB page reads:

  • Functioning Label Free Community
  • Autistic Safe Space
  • Identity First Language
  • Pro-Vaccination
  • Anti-Autism Speaks
  • Anti-Compliance Based Interventions
  • Anti-Cure
  • Pro Autistic People
  • Pro Disability Rights
  • Pro Presumption of Competence

I think that is one of the most beautiful things I’ve ever read. I only wish I had read it sooner because PACLA offers something rare:

Actual Autism Acceptance!

The real deal! I’ve seen FB pages, support groups and organizations advertise with pride their commitment to autism acceptance only to read about:

  • Early interventions/intensive therapies that work to eliminate ‘Autistic behaviors’
  • Using functioning labels and other medical model language to refer to Autistic people
  • Loving the child yet hating the child’s autism
  • Stories of people ‘overcoming’ autism
  • Tips, tricks and diets that alleviate ‘autism symptoms’
  • Surviving as parents of disabled children
  • Language that describes us as suffering or as victims

Nothing from that list supports autism acceptance. It doesn’t make me feel good about how these people view my kids or me. Reading those words doesn’t make me feel accepted.

Pay attention to language, if you’re seeing mentions of cures and thread after thread of how unbearable life is as an ‘Autism Parent,’ you are not in a group promoting autism acceptance no matter what they advertise. I’m thankful FB wasn’t around when I was a kid. Hypothetically-speaking, I can only imagine I would have been heartbroken to think my Mom spent her days talking very openly about how difficult life was because of me and even worse, that everyone was reading it!

I would not have felt accepted.

 

Awareness v. Acceptance: Does it Matter?

Yes, it does. Awareness lets us know that something exists, which is fine if you’re introducing something new. But we’re not and this is no longer about being aware of autism, but being accepting of Autistic people. Autism acceptance is a concept of entirety with many facets and layers and dimension. It is wrought with feeling and emotion, knowledge and ignorance, and most importantly with…

LOVE

True acceptance is about loving a whole person and everything about them. I was a late-in-life diagnosis, self-diagnosed at 37 then professionally at 39. At 41 I found the autism community online and it felt like I was home. Never in my life had I found anyone I could really relate to and not hide my true self from. Not even my family. And then I found hundreds on Twitter, FB, and through blogging. It’s been the most liberating experience of my life.

I grew up undiagnosed and it was difficult. It was decades of feeling lost, confused, scared and angry on the inside while maintaining a perfectly happy facade. My children know they are Autistic and are happy to be so. They understand they need accommodation so they can be successful, but they also understand these accommodations are necessary and deserved.

They know they are loved and accepted just as they are.

Autism acceptance is about letting go of what the majority says is right or ‘normal’ and having the courage to love unconditionally. It’s taking a step back and realizing your child loves you as you are, no matter what, because they are born doing so. As parents we need to do the same. Society hasn’t stepped in yet to dictate your child’s perception of you so don’t let an ignorant majority dictate your perception of your child.

It’s time to turn away from societal expectations of normalcy. And well past time to show our children (all Autistic people) that they are right and beautiful just the way they are. It’s time to be received willingly and recognized for our true selves. It’s time for…

AUTISM ACCEPTANCE

 

2 replies
  1. JoJo says:

    I’ve never really understood the divide between acceptance and awareness. To me they are parts of the same thing. This post did a very good job of explaining why the difference between the words is so important. Thank you for taking the time to explain.

    Reply

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