Autism and Blue Blue Moods

The online autism community is a study in contrasts and conflict. Sometimes, it's a very uncomfortable place to be, and April (and the lead up to it) is one of the more uncomfortable times, as autism organizations gear up for Autism Awareness month and World Autism Awareness Day (link to Autism Speaks Light it Up Blue campaign), April 2. There's also Autism Acceptance Day and Month, started by autistic advocates Paula C. Durbin-Westby and Dusya Lyubovskaya, taking a different path, one about the positives of autism. There are a lot of other facebook pages, like World Autism Awareness Day, too.

Major autism organizations are promoting it, as well, as it plays an important role in fundraising efforts. Autism Speaks has its Light it up Blue campaign, and you can buy tees and other items to support it. By comparison, the Autism Society is low key in its efforts for the month, although the fact that it uses the words "people with autism" in its pitch is encouraging: "Show your support for people with autism by wearing the Autism Awareness Puzzle Ribbon – as a pin on your shirt, a magnet on your car, a badge on your blog, or even your Facebook profile picture - and educate folks on the potential of people with autism!" Autism Speaks' campaign, though, doesn't directly address autistic people, at least not on its front page: "Light It Up Blue, in its third year, is a unique global initiative to help raise awareness about the growing public health concern that is autism. Iconic landmarks around the world will Light It Up Blue to show their support." It does on the about us page, though: "Additionally, WAAD celebrates the unique talents and skills of people with autism, and features community events around the world where individuals with autism and their families are warmly welcomed and embraced." Now that's what should be front and center in autism awareness day and month: celebrating autistic people. And that's just what most of us are doing.
Autism Ribbon
It's hard not to be blue at the contrast in how different factions in the autism community see autism, push autism awareness in certain directions. Part of this is because money-raising ventures rely on hyperbole to get people's attention and more importantly, their wallets. If we cast autism as a health crisis, then people are motivated to action (well, at least once a year to open their wallets). If we cast autistic individuals as unique, incredible people with tremendous hurdles to overcome, I'm not sure that gets the money flowing in quite the same way.

Agendas differ, even as we all collectively gear up to raise awareness within our communities, raise money for our favored organizations, or hunker down and prepare to hear war stories from parents who've been through hell and back to help their kids overcome and do well. There will be the broken stories, the light-out-of-his-eyes tales, the recovered stories told again and again online. In short, it will be like every other month in autism land.

What will be misunderstood is that when people in the real world work to raise money for their organization, walk for their society, or in general put on blue to show support for the autistics in their lives, all those nuances, all those details, that some of us online are aware of will never register at all for the majority of these people who put on blue, sell cakes or hold car washes and yard sales.

When my students and I volunteer at the autism walk, most of them won't know about the online controversies, the wars and battles that rage year in and year out. What they will see are the 2,500 people who show up to have a blast at the zoo. My students will be helping make a great day possible for families with autistic individuals. We will don blue and have a blast.

So even though all this online controversy and divide, all the debate about blue and Autism Speaks, etc., make me incredibly blue, I will be blue the month of April, because this month of April is about my girls and my son. It's about how I celebrate their incredible spirits, their sweetness, their determination to overcome the hurdles placed before them.

For my Rosie, who would be a gorgeous Snow White.

For my Lily, who leaves SpongeBob aside on the weekends.

For my ever bright boy, Bobby, 
who looks more like his grandfather each day.

I'll be blue for them, but I won't be sad. I also won't engage in any online battles about which organization others support or deride. I won't. I'll respect my facebook friends who feel differently than I do. I will accept their right to make their own choices, and I won't do it begrudgingly.

I will be blue, though. And I'll be lighting it up blue, too.


usethebrains godgiveyou said...

Kind of a trickster...ain't ya?

K Wombles said...

Always. :)

Karen V. said...

LOVE THIS!! You look good in blue! ;)

Dixie Redmond said...

Interesting perspective. :-) It's a time to honor my son and all the hard work he has done in learning and growing.

farmwifetwo said...

I simply ignore these things.

I don't need a time of year to remind me about autism. I don't find it "a way of being"... It's a lot of work. I'm not sad about it, but I don't think sugar coating the realities of it, swarming those that have bad days or bashing parents because yanno only adult autistics truly understand the realities of autism. Needless to say I have little use for the online autism world.

So.... I just keep doing what I am doing "living with not for" autism.