Friday, March 21, 2014

World Autism Awareness Day doesn't actually help Autistic people

First some history from Wikipedia:

"World Autism Awareness Day has been held every year since 9 September 1989. It was designated by the United Nations General Assembly resolution "62/139. World Autism Awareness Day," adopted on 18 December 2007, proposed by Qatar, and supported by all member states.[1][2][3][4] The resolution had four main components:

the establishment of 2 April as WAAD
participation of UN organizations, member states, NGOs and all private & public organizations in WAAD
raise awareness of autism on all levels in society
to ask the UN Secretary-General to deliver this message to member states and all other UN organs.[3]

I suppose in 1989 a World Autism Awareness Day may have been useful in some ways. After all, at that time the diagnosis of Autism had only been available for about 40 years, and Autism was not something most people knew about. In fact, in the 1840's Donald Gray Triplett, now in his early 80's was the first person ever diagnosed Autistic. Although I can't speak on his behalf, I'm pretty sure that World Autism Awareness makes no difference to Donald in his every day life.

I can, however, tell you with all certainty that World Autism Awareness Day does not help my children. It does not stop students at my sons school calling him stupid when he has to seek clarification on work tasks because he didn't understand the way the teacher communicated.

World Autism Awareness Day does nothing to stop students at my sons school calling him rude when he tries to assertively explain his viewpoint in his sometimes monotone voice.

World Autism Awareness Day does not prevent people from staring at my daughter if she has a sensory overload triggered meltdown in a public place and making snide comments about her needing a good spanking.

World Autism Awareness Day doesn't stop a mother in my community referring to my children as c*#^s who have behaviour problems because of my parenting and insisting they can't be Autistic.

Those kind of situations can not be helped by awareness.

I would actually argue that awareness can in some instances can hurt my kids. Like when students at my sons school say to each other- "don't do that, it makes you look Autisitc". I'm not going to break down for you how many ways saying something like that is wrong (mostly because, to be completely honest, I can't stand the thought that you might have been reading my blog for a while and still not know why that statement is so offensive). But I will say that hearing his neurology referred to as an insult breaks my son just a little bit more each time it happens.

There are others who agree with me. They are Autistic adults. When I asked them if World Autism Awareness Day helps them they said:

Kassiane- "yeah it helps me by making the world more aware that I don't exist, but would if I was a 6 year old white boy. And then when it finds out I do exist it reacts in a way that's a really awful amalgamation of insisting on denying my existence and acting on every awful hyperbolic stereotype, thus resulting in me being invisible except when people are wiping their asses with me.

Oh wait that's the opposite of helping."

Lei- "Awareness does not help me. I am aware of a great many things, but that does not mean I understand or accept them. Almost everyone I've ever met is "aware" of autism. That doesn't mean they accept me, or think it's okay to be like me. It just means they recognize my existence. That just seems weird to have a day set aside to say "Yay! You exist" and nothing else. I don't think it helps anyone to be tolerated once a year. I do plan on "celebrating" that day by reframing it as Acceptance Day and using it to open the library and hopefully, to change some minds about autism, acceptance and the value of human diversity."

Accpetance on the other hand...... true acceptance of Neurodiverstiy..... true acceptance of the idea that everyone is valuable just as they are and has something of worth to offer even if they are part of a minority group..... that would help my kids and my friends.

Acceptance of difference would stop students making value judgements on people needing communication clarified. 

Accpetance would make it inappropriate to make jokes and form insults based on someones perceived differences. 

Acceptance of things we see but don't always understand would mean I and my children would not be subject to criticism and hurtful comments when things get hard for us in public.

Acceptance is the only way my kids are going to grow up and not have to face the societally induced struggles my Autistic friends have faced in their life times.

And let's face it, no one wants to know their kids are going to grow up having to fight every day to be deemed worthy by their peers just because they process information differently and need more support than most people do.

No one wants to know their kids are going to be the butt of jokes and snide remarks because their voice doesn't have the same range of intonation as other people.

No one wants to know their kids are going to grow up knowing that one day a year they are celebrated but the rest of the year they are going to have to "tough it out", "suck it up" and "just do what you can not to draw attention to yourself and you'll do fine".

No one wants that for their children.

So World Autism Awareness Day does not help my children. Or my friends.

I am asking you to please help me spread the word that what Autistic people need is ACCEPTANCE not awareness.


  1. This is an extremely ill-weighted blog. With over 6 Billion people on this planet, no amount of 'awareness' will eradicate misconceptions or bullying when it comes to autism...or any other disability for that matter. 'Awareness' campaigns offer people an insight into is up to the individual to take the awareness campaign on board or not. To brandish World Autism Awareness day as not 'helping' the autistic community, with such a large brush, is actually very offensive. And to give up on the ambition for awaerness ergo acceptence, just because you personally have not seen results, is damaging.

    1. Hi Sara,

      As I have said in response to another comment on a different post, the great thing about advocating for acceptance is that while you are doing it people do become more aware, so we can have both happening at once. Unfortunately there is a lot of evidence that advocating for awareness does not have the effect of promoting acceptance. Part of the reason for that is that awareness campaigns are largely run by organisations like Autism Speaks and Autism Awareness Australia who- in order to fundraise- offer insights that suit their purpose of selling the public a message of tragedy and fear of Autism. How anyone can think this is helpful to Autistic people is beyond me.

      So I guess I would ask you, since you acknowledge awareness campaigns have no hope of eradicating misconceptions and bullying- why would you keep engaging in them? To me, that is offensive. Wouldn't you rather try a strategy that has been proven to change attitudes at least to some degree?


  2. I just went through several of the scenarios you talk about this weekend while visiting my NT best friend and her NT son. the thing that's really, really scary is these are people that are TOTALLY "accepting" and knowledgeable already and her son still treated mine like a fool because of the very things you discuss. It made me feel bleak and hopeless. And then, by NOT leaving when i sooooo wanted to, and by talking it out, the whole scene got a little better. But I really question what will truly help...if anything...One solution? A truly neurodiverse world. and I guess what with these new statistics, that is the wave of the future!!!!


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