My Son Has Autism and We've Chosen #RedInstead


April 2 was World Autism Awareness Day. We are relatively new to being “autism parents,” with our 6-year-old son only having been diagnosed last year. I am all for awareness, acceptance and generally increasing education for those who don’t know enough, or still think Daniel is the way he is because we vaccinated him, or don’t discipline him enough, or whatever other ignorant assumption they might have.

World Autism Awareness Day was brought into being on December 2007 by a United Nations General Assembly resolution, under the more general auspices of improving human rights around the world. The resolution was met with acceptance from all member states, and first celebrated on April 2, 2008. For 2018, the U.N.’s program for the day includes a special focus on women and girls with autism; recent analyses estimate that 3.25 boys are diagnosed for everyone one girl (down from 4:1), but when looking for autism in girls (who often presently drastically differently than boys), that ratio can drop even more.

Autism Speaks, perhaps the most well-known of autism-related organizations, uses the tag line of “Light it Up Blue,” and encourages supporters (of its organization and of those with autism) to wear blue on April 2 and to use outdoor lighting with blue light bulbs. It’s a nice symbol of solidarity, really, it is, but here’s the thing: it’s blue because they operate on the outdated assumption that it’s mostly boys who are autistic. On the one hand, let’s overlook the old science, and the gender stereotype of “blue is for boys,” because the large majority of people and organizations lighting it up blue are simply trying to be supportive of the autism community. On the other hand, doesn’t education go hand in hand with advocacy? Don’t we want people to actually be supportive of those with autism, and not just pay some lip service to an Autism Speaks marketing campaign? And full disclosure: the last few years, my boys and I have worn blue, I have used #lightitupblue on my social media, and I, too, thought I was doing a good thing — in support of friends and family who live with autism.

When you know better, you’re supposed to do better, though, so this year, we didn’t wear blue. We are being educational, instead.

I have been reading about Autism Speaks for a week or so now. Reading articles, blog posts, rants, comments on articles, etc. From my purely unscientific assessment, it seems like those who support the organization do so because it’s “the autism organization,” or in other words, they either don’t know any better, or they don’t care. The folks who fall into the anti-Autism Speaks camp almost universally support the Autistic Self-Advocacy Network instead, and they recommend use of the hashtag #redinstead.

Other catch phrases include “Nothing About Us Without Us,” which perhaps is directly aimed at Autism Speaks, who controversially had no autistic people on their Board for many years. When they finally put one on the board, he resigned over the organization’s practices. Currently, Autism Speaks has two autistic members of their Board, which is a tiny step in the right direction, but for many, it’s not enough.

Autism Speaks portrays autistic children as a burden. We honestly don’t know what my son’s future and development are going to be like — only he will be able to clue us into that. For now, he is highly verbal, has a huge vocabulary, and is doing exceptionally well academically; he also stims frequently, walks around with his noise-cancelling headphones on, and engages in extensive, elaborately acted-out scripting. On our very worst days, even when his type 1 diabetes is exacerbating symptoms and he is in full meltdown mode and unable to communicate why, in those moments when I feel most helpless and inadequate, I cannot fathom anyone would consider him a burden.

Autism Speaks is perhaps most controversial for their support of finding a cure for autism, or a pre-natal test similar to what’s available for Down syndrome and other genetic conditions. Some autistic adults see this as a direct affront to their existence — how can Autism Speaks possibly claim to represent them, when in effect, they seek to end the possibility of children like them existing? They even partnered with Google to launch a genome-sequencing project, MSSNG, which aims to sequence ten thousand complete genomes and “will identify many subtypes of autism, which may lead to more personalized and more accurate treatments.” While this may sound “great,” it’s reasonable to believe that if they can identify what causes autism, they can identify how to prevent it. Even the project’s name, MSSNG, is a twist on “missing,” one of many negative ways the organization has referred to autistic children in the past.

There is a push by some in the autistic community to make April Autism Acceptance Month, rather than focusing on awareness; but there is wide debate within the community itself as to just what constitutes “acceptance.” For my son, I honestly don’t think he has a concept of acceptance, or of standing out; he is who he is, unapologetically. His immediate family allows him to be himself; at school, he has made real friends just by being himself, and to their everlasting credit, his teachers thus far have made no effort to change him, but rather to reach him on whichever level he needs.

I feel like we are privileged to be able to focus on acceptance rather than awareness. Because we are willing to take Daniel as he is, rather than changing him to fit the mold, we are much freer to pursue advocacy and encourage others towards acceptance as well. But we still have a long way to go with acceptance.

In the end, we still have a lot to learn — about Daniel, about autism, about being a good autism ally, and about advocacy. Because of all that I have read so far, regardless of how we choose to approach autism advocacy in the future, and because it is Daniel’s favorite color, we do not light it up blue — we wear #redinstead.

Follow this journey at Mama McCue Musings.


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