What April Does to #ActuallyAutistic People

We're only a few days into the month of April but already Autistic people are running for the hills. It starts with the dread during the final weeks of March. We know what is going to happen.

April is Autism Awareness Month, with April 2nd being the official UN Autism Acceptance Day. Or Awareness. I'm no longer even sure myself. Depending on who you talk to, you're supposed to either accept or be aware (beware?) of Autistics.

Of course, added to all this is Autism $peaks and their Light It Up Blue. Because blue is for boys and females are never autistic!

In response, a lot of Actually Autistic people started #RedInstead. There's also Light It Up Gold, by the Autistic Union (Au, for gold, get it!?)

So there's just a whole lot of posts and memes going around (oops, I'm in the mix as well!), a lot of opinions on which colours should be lit up, a lot of arguing, a lot of blatant ableism, a lot of hurt feelings, friendships lost, energy wasted and on and on and on.

It seems my Actually Autistic friends fall into one of two categories: 1) they either post CONSTANTLY about which side you should be on and if you wear the wrong colour, they'll hate you forever; or 2) go into hiding for the month of April to preserve their sanity.

There's no right or wrong way. Everyone has to do what is best for them, but it does kinda suck for me because I want my friends back - both types, the vocal ones and the quiet ones. Both are hurting. Some express it outwardly and some keep it inside, but April is a tough month. Either way, we're getting hurt because we know there is so much work to do to change attitudes and we are bombarded by messages.

Please understand while many of us are proud of our neurology, proud to be Autistic, and even proud to have your support, this month can be overwhelming and we might be tired of hearing any more about it. Some of us are also without the friendship of the people who understand us best during this time, and that's not always easy to handle either.

Hoping for a day where this month does more to help us than harm us. 

An Open Letter To My Son's School

For privacy reasons, I am not publishing the name of my son's school. However, this is a copy of the letter I sent to his school in response to their "Light It Up Blue" celebration.

The "Light It Up Blue" campaign was started by Autism Speaks - an organization that I unfortunately cannot support as an Autistic adult and self-advocate, as well as mother to an Autistic child. Autism Speaks says they are spreading "awareness" but uses fear-mongering and likens autism to a deadly illness that is "stealing children" and requiring a cure. They consider autism to be a disease and a "public health concern." (Ref: http://www.autismspeaks.ca/events/light-it-up-blue-and-world-autism-awareness-day/)

They do not listen to the voices of autistic people and do not have one autistic representative on their board or openly in their organization. 

As such, I cannot support their work and I cannot sit back quietly while they continue their reign of fear.

I will continue to fight for acceptance - acceptance for all people, regardless of ability, sex, creed or colour. I will continue to fight for acceptance of neurodiversity and the understanding that different is not wrong or less. In fact, if your autism celebrations are done with the intent to promote pride and acceptance of autism, I can only support that. But if they are based on the need for a "cure" for the "devastating curse of autism," as promoted by Autism Speaks, then I am distinctly against it.

I am writing because I want you to be aware of where this campaign stems from and how it can hurt autistic people. After all, we are not disappearing. Autistic children grow into autistic adults.

Because my son is too young to be involved in such politics, I will send him to school in blue so he can look like his friends and enjoy his day, but understand this puts me in an awkward position and is not an ideal situation.

SCHOOL has done an amazing job supporting my son in the short time he has attended. Please do not let the loudest voices, and in this case, the one with the most money, sway you down the wrong path. There are many great associations where autistics are coming together to speak, and hopefully one day we will be truly heard.

Thank you for your consideration.

World Autism Awareness Day

NOTE:
This post was originally written April 2013, before I knew about how awful Autism $peaks is.

I have chosen to leave it up rather than deleting it, because I want to show how far my own understanding has come and how we can change. 

When you know better, you do better. 



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Today is World Autism Awareness Day!

The point is to raise awareness and understanding of autism worldwide. People wear blue clothing or change their house light bulbs blue. Cities have participated in the past with Toronto's CN Tower and New York's Empire State Building turning blue for the night.

More info:
WAAD UN Site

One family's way to Light It Up Blue.


Also, Toys R Us Canada will donate $1 to Autism Speaks for every "like" on their Facebook page until April 30th.


Are you doing anything special? Is your city? Let me know!
Either way, thank you for reading our blog and following this journey with us. That's the best type of awareness anyone can gain and we appreciate it.

Beijing Is Blue

Please see the note I wrote on this post first.

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I'm currently in Beijing, China at the Hilton and it was so heartwarming to get up this morning and see staff members wearing blue ribbons in honour of World Autism Awareness Day. You'll see my post about WAAD tomorrow, since I'm a day ahead of North America over here!

They're also showing a special autism-themed movie and working to create more training and resources to help kids with autism. Unfortunately, I'm checking out of the hotel today, so I won't be able to see it, but I'm just really pleased to see different countries jumping on board the Light It Up Blue campaign.