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.

What Do You See?

Speaking of appearances, this is the video we made in protest of Autism $peaks most recent "call to action."

Why I Don't Like Autism Speaks

Autism Speaks, but I don't think they listen

I'm going to put some opinions out there to the best of my ability, because I get angry every time I think about it all, so it's not easy. I'm also not going to link to any doom and gloom sources (why would I want to give them more traffic?) so if you really want to know more, you'll have to Google it yourself. (The links in my text all go to posts on MY site with MY opinions)

I'm concentrating on what I know of Autism Speaks Canada, since I'm Canadian, but most of it applies to Autism Speaks, which originates in the US.

My issues:

• I've talked about my issues with the puzzle piece logo a bit in this post. The puzzle piece logo that has become so famous was created by Autism Speaks. 

• No one on their board of directors is Autistic. Not one. Does that make sense to you?

• They create/sponsor ads equating Autism to a disease like AIDS or cancer, only worse.

• They sponsor movies like, Autism Every Day, where mothers complain about how hard their lives are, how their hearts are breaking every day and how they'd love to commit a murder-suicide by driving off a bridge with their Autistic child.

• They spend most of their money researching "cures" rather than supporting families. You can go ahead and see their financial reports for yourself on their websites. 

• They are fighting more for Awareness rather than Acceptance. There's a big difference between the two. 

I could go on, but I think that's a pretty good start. They do not get my support or money. They do not represent me, my family experience or my ideals.

Autism Speaks, but most certainly not for me.