Light it up Blue – but for who?

Why are we asked to Light it up Blue on Autism Awareness day?  It’s something not a lot of people take the time to think about. All around the world buildings are lit up blue, but many people don’t know what the point is. They know it has something to do with making people aware of autism so they assume it’s a good thing, and think no more about it. So why are we asked to Light it up Blue during Autism Awareness month?  And is it a good thing?

The idea behind Light it up Blue comes from the organisation Autism Speaks, and that’s something I will address below. First of all why blue? Well according to the co-founder of Autism Speaks, Suzanne Wright, it’s because four times as many boys as girls are autistic. Now putting aside any feelings I might have about Autism Speaks for a moment, let’s say that they created Light it up Blue with the best of intentions.  Even if they did we have moved on from the idea that autism is something that only, or even mostly impacts on males. I get angry now when I hear people talking about how few girls have autism.  What I say is that only a small amount of women who are autistic have been diagnosed.  It’s not about male or female autism.  It’s about how that autism is shown, or how well it`s hidden i.e. coping strategies.  My view, and the view of an increasing number of autism experts is that it is likely just as many females have autism as males. There is nothing wrong with women using the colour blue, it’s just a colour after all, but if the idea of the movement comes from something we now know not to be true, then whatever you think about Autism Speaks you might feel the idea is a bit outdated.

But what about Autism Speaks themselves? Well as I am sure many of you know there is not a lot of love for them among most autistic people. The feeling is that while they do raise awareness of autism, they do so in a negative way. They spread a feeling of fear, and the idea that autism is an epidemic, and something that needs to be fixed. When you watch their videos they only serve to reinforce this sense of autism being deeply negative. It is talked about in the same breath as cancer or AIDS. I feel the same way as a lot of other autistic people; awareness is a good thing as long as it is making people aware of the truth. Yes autism can be hard, and it makes my life harder than it might otherwise be, every day of my life.  But it is not a wholly bad thing, nor are autistic people broken, or in any way less than anyone else. It`s fine to tell the truth about the parts of autism you find hard, but to say that autism itself is bad, and that everyone who is autistic is suffering, and needs a cure is not OK.  I don’t want to turn this in to a blog about Autism Speaks, but it’s worth taking the time to look in to why a lot of autistic people don’t feel Autism Speaks is speaking for them.

The issue for me is this, that most people who Light it up Blue don’t think about any of the things I have just talked about.  All they want is to do something good, something that will help someone in their family, or other autistic people. So I don’t want anyone to think I am having a go at them, or that I will look down on them if they do Light it up Blue! The point of this blog is this – try and think a bit more about why something is being done. What the meaning behind it is, and if that is the best way to help autistic people. I am not saying I have all the answers, but if a lot of autistic people themselves have an issue with something that is meant to benefit them, then it might be worth thinking of something new. Without all the facts and figures I can’t comment on how much an awareness day/month, or any one campaign helps the day to day lives of autistic people. But what do you think? Is it good that the most prominent thing on autism awareness day is run by a charity that a huge number of autistic people don’t like at all?

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5 thoughts on “Light it up Blue – but for who?

  1. Right. I have wondered about the ‘blue’ thing too. Considering what is now a common knowledge, that of girls not being diagnosed due to their ability to cope better, it seems irresponsible of them to use a color representing (only) boys.
    Bringing awareness to the world is of course a hopeful act. But playing with statistic is misleading.
    But you know, Paddy, I am very concerned about something else,too.
    What do young adults with autism have againts Autism Speak? I have read several articles where there were comments from young people expressing how they dislike, or not trust, this organization. Unfortunately, no one disclosed why.
    My grandson, Ian, was diagnosed with Asperger’s in Dec 2014. Though I am not as overwhelmed as I was in the beginning, the confusion is still there. Our battles are still as real as before, even getting harder it seems as the child is beginning puberty. I wish not to waste my reading time subscribed to an unreliable source.

    1. The main issue a lot of autistic people have with Autism Speaks is that they don’t listen to what autistic people say and yet claim to represent them. Most of the money they raise goes to looking for a cure ( something most autistic people don’t want) and not to helping autistic people and their family’s out with day to day things. They don’t represent the views or feelings of most autistic people and yet they claim to. Over all they are out of touch with what people with autism want/need. Plus they have a very negative view of autism. Thanks for the comment hope this helps clear things up. 🙂

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