Awareness cannot lead to acceptance

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?

We’re one week away from what Neurodivergent K aptly calls Autism Freakout Month.

For the past several weeks, I’ve faced daily reminders that I’m a problem. I’ve seen puzzle pieces, blue lights, blue profile picture filters, and general fear mongering surrounding autism. I’ve seen well-meaning, but completely misguided, autism organisations arranging the strangest of awareness raising campaigns. Most of the time, these campaigns exclude us completely and focus primarily on the parent experience. These campaigns use harmful stereotypes to highlight our differences, but instead of presenting them as differences, they’re presented as deficits and delays.

And I’m reminded that we are a problem.

We’re fighting for our human rights while autism awareness campaigns show us as less than whole human beings. We’re asking for acceptance while awareness narratives make us seem unacceptable as we are.

Please rethink your awareness raising. Don’t contribute to the negativity surrounding autism. We can see and read everything that you’re saying, and it reminds us that, to you, we are a problem.

10 thoughts on “Awareness cannot lead to acceptance”

  1. For April Autism Awareness Month, Aspiritech, Rush and Northwestern U. are hosting author Steve Silberman in Chicago followed by a panel discussion on expanding opportunities for transitioning youth and adults on the spectrum. On the panel will be an Aspiritech board member who is on the spectrum. That will be followed by a short resource fair with organizations offering services for adults plus self advocates who will be advertising their businesses

  2. Hi , I have a non verbal 4 yr old with autism. I want to go in a time machine and speak to him at 18 yrs old so bad .I want to ask him so many questions. I do believe that in the future he will be bright and intelligent and thriving .For now Iam lost on a tornado trying to decode his frustration and why he does things that I can’t help him with with. I personally see the puzzle piece symbol as a symbol that represents what is going on in his life that represents his problems not his beauty of who he is. Yet I also see the puzzle piece as a symbol of the complexity of his diagnosis. When it is broken pieces .when I see a whole puzzle piece symbol put together that represents him in the future. I hope I’m making sense. I don’t expect acceptance from people. I expect awareness and I chose to fight his journey to spread awareness and teach others to educate themselves and learn how to help. I don’t want you to sympathetically smile at my son while he’s having a melt down. I want you to offer to carry my bags to a quiet room or out to my car. I want you to understand why he’s doing this and not look at me like he’s rude when he ignored you even tho you were bending down to his level and trying to ask his name. I want to fight for free training in schools, amusement parks, grocery stores, and diners . Not just acceptance. Because the number is rising and all of these Lil ones now will grow up and more are coming. I’m asking you as an adult is this the right fight I should be fighting for my son. Because I want nothing more in the world then for him to grow up and be proud of the fight I fought for him and the voice I gave him.

    1. “I want to fight for free training in schools, amusement parks, grocery stores, and diners .” This is not what most awareness campaigns do though.

      As I mentioned, if awareness focused on how to accommodate us – how to tone down the sensory assault that we experience, how to respectfully assist us when we meltdown (as adults or children), etc. then I wouldn’t have a problem with awareness. But awareness campaigns don’t do that; they focus overwhelmingly on fear mongering and when we’re the people who are being made into objects that people should fear, it’s dehumanising and hurtful.

      As for the puzzle piece: We really don’t like it. We’re people. You don’t have to completely understand the why of everything in order to accept us. Some of what we do may seem meaningless for non-autistic people but respect that it has meaning for us.

      Lastly, I understand that non-verbal is the way that professionals speak about whether we speak or not, but autistic people who do not speak prefer to be called non-speaking because that term recognises that they can and do still communicate – just not with mouthparts.

  3. I understand. Clearly you’re upset… but I don’t think that’s anyone’s intention. I believe when people know better, they do better. No one wants to offend. How then would you prefer to be celebrated & supported by your community? I understand expressing what you don’t want. So tell us what we CAN do that won’t offend you.

    1. I realise that a lot of this is done with good intentions, but obviously good intentions doesn’t erase the hurt that these actions cause.

      So, what can you do? Tell the world that we deserve a place in it. Even though we may be different, our difference doesn’t make us less valuable as people. Remind the world that we are whole people who want to live our lives in the most authentic way that we can. Importantly, when I say acceptance, I’m not proposing that we go without the support that we need in order to live our lives. We are disabled living in societies that don’t accommodate us, so we do need some support – and that can even be provided through respectful therapy that recognises that we are autistic and doesn’t try to make us seem less autistic for the benefit of everyone else.

  4. I think really it’s a matter of cultural sensitivity in the same way as accommodations are made for people who speak other languages, and these organizations that are currently mostly run by parents really need to make more of an effort to actively partner with autistic people to drive these organizations. The adage “Nothing about us without us” really is apropos. There should be at least 50% representation on governing boards of directors by people who are autistic. This is only fair given that there are so many adults now coming out who are very competent to speak for ourselves. Anything less would not be giving us due respect.

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