Apr 3, 2016

To Blue or Not to Blue

It's Autism month. There is some debate on if it should be awareness or acceptance month. The fact is, even those living with Autism can't agree on almost anything connected to Autism. Yesterday, buildings and monuments all around the world went blue for World Autism Awareness day and lots of people are Lighting Up Blue. I won't be. It's not popular to admit that or to point out what Light Up Blue officially represents. I specifically didn't post this yesterday out of consideration for those who just wanted to enjoy the day and not get involved in the politics of Autism. 

Living with Autism can sometime feel like shouting into a void. It can be lonely and frustrating. Awareness and Acceptance are complex issues, and my own views are continually evolving. The truth is somewhat disconcerting. Although Autism connects us, the Autism community is a community, not divided but splintered into a million pieces. There is very little universal consensus on anything from causes to decision making to if the term should be 'Autistic' or 'person with Autism'. Being a spectrum disorder, Autism affects individuals and families in such vastly different ways that everyone wants something different from Autism month. The one thing that we all want is to feel heard.

It's a touchy subject for some. Like it or not, aware of it or not, agree with it or not, Light it Up Blue started and still represents an Autism Speaks Campaign.

I used to Light Up Blue. I used to support Autism Speaks with money and time. I donated work for a fundraising collection of stories. I spread the word on social media. Then I found out that, like other charities I'd previously donated to, huge sums of money raised was going to pay salaries, research, and marketing campaigns to raise even more money. And very little going to directly to help those in need right now.

That is why I no longer go Blue. 

I don't support everything they stand for, but anyone would be hard pressed to find a group they can agree with on everything. It's not about the goal of the research for a cure because I do support the research. I hope those who are severely debilitated or who wish it can someday access a cure. It's not that they sometimes portray autism as something terrible, because you know what? For some it is terrible. It's not even that they support parents and caregivers as advocates, because what is the alternative? Someone who has never met my son but thinks they know better because they are on the spectrum too? I would no more allow my son to make major life decisions alone than I would a four-year-old. And I am even less likely to allow some autistic stranger tell me that I don't know best for my son and myself. Because I sure as hell do.

So, when I don't Light Up Blue, IS NOT A JUDGEMENT on anyone who does. Is it not me saying I support anti-AS groups either, because I don't. I have no interest in being silenced or discounted as a voice for my son. It is not me saying I support acceptance over awareness. I want both to a degree.

I will never accept something that hurts my child the way Autism does. I do want acceptance in a positive way that helps autistic people integrate and live their life to whatever level they are capable. 

I want awareness. Real awareness, not the fluffy 'isn't autism great for Silicon Valley' awareness. The raw awareness of the good and bad. The meltdowns, outbursts, the stress, the grief, the work from caregivers and autistic individuals, the determination, sleepless nights, the milestones, achievements, and the moments of joy. I want Awareness of how little things can make life a little easier. 

So, regardless of want to achieve this April, if you turn blue or not, whatever it is you support or how you support it, and even if I don't agree with your message, I do hope at the end of it, you feel heard. 

Happy Autism Month.


  1. Thoughtful post that addresses many sides of the issue, Carol. I'm glad we have charity watchdogs to keep charities honest. It is disheartening how much goes to overhead. You do a great job in your tireless efforts to support your son.

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