Awareness versus Acceptance

potential trigger warning: videos and discussions of autism in a deeply negative light

April is a strange and often horrible month for Autistics. I’m not going to bother to go very deeply into why – it’s largely about the Light It Up Blue campaign and who sponsors it. Since 1989, April 2nd has been “World Autism Awareness Day.” Since at least the 1970s, the entire month of April has been “Autism Awareness Month.”

One could argue that more awareness was needed back in the 1970s, but when it comes to conditions today, I think this graphic about Autism Awareness Month and the Light It Up Blue campaign kind of says it all:

image: a picture of a house under a huge rock, with the following text: Can the three people that aren't aware of autism even see the blue lights from where they must live?

image: a picture of a house under a huge rock, with the following text: Can the three people that aren’t aware of autism even see the blue lights from where they must live?

So . . . we are all aware that there is this thing called autism and that there are these people who are autistic. Awareness for the win. Now it’s time to move beyond awareness to acceptance. April has been re-branded as Autism Acceptance Month since 2011.

It seems pretty simple and straightforward to me. Yet I see arguments.

No, no one (at least no one that I have noticed) is saying that autism and Autistics shouldn’t be accepted. But there are people who call the Autism Acceptance Month campaign divisive. There are people who say that it’s all just semantics and that both awareness and acceptance are pushing for the same thing. There are even, much to my surprise, some Autistic people who are saying these things.

So I thought I would write about the difference between Autism Awareness and Autism Acceptance, to help explain why I believe that it is more than mere semantics and why I believe that Autism Awareness alone will kill Autistics. Of course Autism Awareness is important — how can one accept something one doesn’t even know exists? But awareness alone is not enough. It is time to forget about those three people living under a rock and work instead for Autism Acceptance. Here is why:

Let’s look at a few short videos and articles, then discuss them from the paradigm of Autism Awareness and Autism Acceptance. If you have been promoting Autism Awareness and feel that I have misrepresented your views, maybe it’s time to consider joining us in promoting Autism Acceptance.

 

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This animation gives a (pretty darned good) idea of what sensory overload (quite common among Autistic people) can feel like.

AUTISM AWARENESS SAYS:

Oh! How horrible that must be to live with. I have a great idea! We could make a little village just for autistic people to live in. It could be far away from where the rest of us live and they could live in quiet happiness there! Wouldn’t that be wonderful? It wouldn’t be at all like institutionalizing them. It would just be a quiet place where they could live without all the things that we love — things that are so hard for them to handle.

AUTISM ACCEPTANCE SAYS:

Yes, our cities are too noisy. We should work on lowering the noise pollution we live with every day. That would be better for everybody. But since many things will still be overwhelming for people with sensory issues, and since it is so important that we accept Autistics and include them as welcome members of our society, we should make sure we work to remove any stigma associated with things like wearing noise-cancelling headphones in public or dark sunglasses, even on cloudy or overcast days. And maybe we can make more sensory time-out rooms in our schools or even public places like shopping malls. I think everyone could benefit from little pockets of quiet and calm in which to re-gather one’s self.

 

-=-=-

 

A link to an article about the high unemployment rates faced by people with autism.

A link to an article about the high unemployment rates faced by people with autism.

AUTISM AWARENESS SAYS:

This is an unfortunate tragedy and shows why we need sheltered workshops so badly! Children living with autism become unemployable adults so it is an act of charity to give them something to do. Of course we can’t pay them as much as we pay non-autistic workers, but they should be grateful that we can find anything for them to do at all.

AUTISM ACCEPTANCE SAYS:

No one should have to work in a sheltered workshop, earning pennies a day, working like slaves and being told that they are not worth any more than they are getting paid! And it is ridiculous that the unemployment rate among Autistics is so high. There are plenty of things Autistic people are good at doing. We should re-think education and vocational training and we should encourage employers to give Autistics a chance at work. We should fight harder for workplace accommodations for Autistics and we should improve the disability and SSI benefits system so that those who actually are unable to work, even with strong accommodations and good attention to training, are not punished for being disabled by draconian rules and pitiful monthly incomes that are nearly impossible to live under.

 

-=-=-

 

AUTISM AWARENESS SAYS:

Oh my God! It’s an autism tsunami! I am so shocked at how the numbers diagnosed keep going up, up, up! What a terrible public health crisis this is! We really need to get on the ball when it comes to prevention and cure of autism! And people are claiming that this is just better diagnostic procedures but I don’t believe that for a minute. How could the numbers spiral out of control like this just from better diagnosis? It has to be something awful we are doing to our children, probably something to do with vaccines or genetically modified food!

AUTISM ACCEPTANCE SAYS:

These increasing numbers are not that surprising when we think about how autism has always been here. Just last week on COSMOS, Neil Degrasse Tyson described Sir Isaac Newton in terms that made him sound very Autistic.  The increased numbers are not a reason to panic. Rather they are a reason to rejoice. Why? Because the more we are able to identify autism, the more chances we will have to understand it and the more we can move toward a society with room for every one in it. When we make changes that make life better for Autistic people, we are making life better for everybody — it has been true with the changes we have made to help people with every other disability so why would it not be the case with autism as well? Oh, and let’s look a little more closely at that study . .. what’s this? The news reports are pointing out the lower diagnostic rates among females and African-Americans but they aren’t mentioning that females and African-Americans who are diagnosed have much higher rates of intellectual disability.  This would seem to indicate that it’s harder for those populations to get diagnosed and children have to present with more severe symptoms before their autism gets noticed. That says that we still have a long way to go and it suggests that we want to see diagnostic rates go up in the future! We want to be able to find and help all those girls and African-American children who are not getting identified and helped the way they need to be.

 

-=-=-

 

(I was going to put another video here, but it was too triggering for me to post and write about. And considering what else I did include in this post, that says a lot, right? So instead, I’d like you to think about the fact that we Autistics see things every day that make us hurt, weep, scared, angry. Think about what your life would be like if you felt like you had to hide from the news and newspapers to avoid seeing the awful things people say about you every day. And think about how you would feel if you were hiding from the media and still had to hear those things anyway, whether it was from overhearing conversations other people were having on the bus or in the doctor’s waiting room, things you saw in books that weren’t even about autism, things that popped up on television shows you used to think were fun to watch until they mentioned you in horrible ways, etc. That is what autism awareness brings — we Autistics get to see more and more horrible things about ourselves every day. The more society spreads awareness without acceptance, the more we Autistics suffer, just for being a part of a society that so clearly hates and fears us.)

 

-=-=-

 

AUTISM AWARENESS SAYS:

What a tragedy this was! Autistic children are incredibly difficult to cope with. We have to have sympathy for parents like this because no one knows the suffering that parents of autistic children go through every minute of every day to raise their poor, hopeless children. Maybe it’s a blessing in disguise, since autism is so awful that the child was not going to have any good quality of life anyway. Killing a child is horrific, but it is understandable when someone hits the breaking point. We should do something to help these parents so they don’t end up turning to such an awful means to end their own suffering.

AUTISM ACCEPTANCE SAYS:

Murder is murder! Do not make excuses for parents who kill their children! Protect these children! There are no excuses for killing people. Autistics are no less valuable than non-autistics. Help parents. Help children. And never try to justify the abuse or killing of anyone by citing their disability as an understandable reason why someone would kill them.

 

-=-=-

 

AUTISM AWARENESS SAYS:

Yes, autism is such a horrible tragedy! We need to raise lots of money, research how to cure it, and protect families from the devastation it causes.

AUTISM ACCEPTANCE SAYS:

What horrible things to say about Autistic people! Is that even true about the divorce rate? Oh, apparently it isn’t. Why would an organization that claims to be about helping families with an Autistic member say such horrible things? And why would people give money to an organization like that?

 

-=-=-

 

And there it is. Don’t light it up blue this month. Don’t support organizations that talk about awareness while refusing to allow Autistic people to have a voice in our own lives and futures. If you want to do something to help Autistic people, consider instead supporting organizations like the Autism Women’s Network, The Autistic Self Advocacy Network, and the Golden Hat Foundation.

Don’t promote autism awareness. Do promote autism acceptance. Do promote ideas, groups, and people who support inclusion in the community, listening to Autistic voices, and addressing Autistic needs with the same dignity and accommodation that we strive to address the needs of all other disabled people.

It’s not just semantics. It’s life-or-death. Choose life.

 

4 responses to this post.

  1. Posted by colinb897 on April 11, 2014 at 5:47 am

    Powerful.

    In the UK we don’t have the strident polarisation that Autism Speaks brings to the US. But the same awareness-acceptance issue is in play; only more quietly.

    Acceptance is only of value where the awareness it is grounded in is intelligent and adequate.
    When the awareness is biased and flawed, then so is the acceptance it suggests and justifies.

    Only as an autistically characterised constituency takes control of the awareness-acceptance agenda; will awareness and acceptance become useful.
    Your piece is a powerful example of and contribution to that self-advocating seizing of that agenda. How you write is an evolving instrument for working to seize that agenda.

    Reply

  2. […] to emotions? Obviously not. People being vaguely aware of autism doesn’t actually help very much either. Acceptance would, but really, the puzzle piece is about fixing us, not helping or […]

    Reply

  3. Posted by Dawn Marcotte on April 13, 2014 at 3:34 pm

    Very interesting article – I like the comparison between awareness and acceptance. As a mother of a child on the spectrum I am not sure I agree that ‘everyone’ is aware of autism. I think they are aware in an abstract way, but I think it is important to continue to make them aware on a personal level. For example what they can do to help a mother who has a child melting down in the grocery store or why a business should hire someone on the spectrum. Thanks for a thought provoking article.

    Reply

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