Blue Lights and Puzzle Pieces? No Thanks!

Kel Autism, It's a Tink Thing 3 Comments

Today marks the start of Autism Awareness Month. A whole month that autistic people and those who support them dedicate to raising awareness and, ultimately, acceptance of who they are. Crazy, really, isn’t it? That they (we) should feel the need to do this. But that’s the world we currently live in. A big part of me hopes that in 30, 20, or even 10 years’ time, there will be no need for autism awareness month, as it will be perfectly accepted that the world is a neurodiverse place and we can all live happily together with all the support needed by everyone on the spectrum.

There are lots of different campaigns to promote awareness of autism and spectrum conditions. One of the most well-known and prominent is the ‘Light it up blue’ campaign (although more popular in the US, it’s becoming more prevalent here in the UK too).  This was  started by Autism Speaks, and, although they didn’t start the puzzle piece symbol, they have certainly adopted it as their logo now.

I have already seen some friends on Facebook changing their profile pictures and ‘lighting up blue’ and, while I’m so happy they are embracing the idea of raising awareness, my heart sinks, and here’s why…

Autism Speaks is not, in my opinion, a group that speaks for me or my daughter. The idea behind ‘Light it Up Blue’ is that there are more boys with autism than girls. I don’t believe this is true. I believe more boys are diagnosed with the condition, but from personal experience in groups, both online and real life, that I belong to, there seems to be a pretty even split between boys and girls. I think diagnosis in girls is becoming better, as professionals become more aware of the way the condition presents itself differently in many girls, and girls such as Tink are being diagnosed earlier.

Autism Speaks is a group that believes Autism is a disease and that our children can be ‘cured’. This, my friends, is utter bullsh*t. Autism is a neurological condition – a difference in wiring in the brain, if you like – and that’s all. It’s not a disease. You can’t catch it. Personally, I don’t believe it’s caused by external factors, although there is ongoing research to determine this, the latest I read about this week involving BPA (funnily enough, when you google this, the first link takes you to Autism Speaks…) I truly believe it’s genetic. I only have to look at myself and Tink’s Dad to see we both have traits that could be considered as being on the spectrum. Put those together and…

Here is a delightful quote I found from Autism Speaks’ mission statement:

“At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.”

Hmmmm…. Starts off well, doesn’t it? Changing the future so our children and adults don’t struggle? Fab! Interesting how they intend to do this without the help of autistic people themselves. There is not one autistic person on the board of Autism Speaks. Surely the people who know best about the struggles faced by this community are those who do it day in, day out? Not just parents, but those who actually know how it feels to live with the condition and the problems this world presents?

Then it goes a bit wonky. Let’s have a look at the parts I have highlighted in bold: I understand why people want to research what causes it – it’s a natural curiosity – but, if you’re doing that, then naturally you’re going to want to use that research to find a way to eradicate it, aren’t you? And that’s where I have a problem.

If autism was eradicated, vaccinated against, whatever, Tink wouldn’t be Tink. I simply cannot imagine a world without her in it. At least, not like she is now. We’ll never know what ‘might have been’ if she wasn’t autistic and it’s pointless wondering now. She is and we love her. What Autism Speaks is searching for is a way to stop the neurodiversity that exists in our world and that, quite simply, horrifies me. Imagine a world that never had Einstein’s amazing brain, Mozart’s music or, one of my personal heroes, Darwin’s work on evolution. Although none of these men were officially diagnosed with autism, there is much evidence to suggest they were on the neurodiverse spectrum. Picture a world where these amazing, creative and scientific brains just don’t exist….

And a global health crisis? Really? Yes, autism often comes with other conditions attached, such as epilepsy , for example, but a crisis? This conjures up an image of villages in Africa where people are dying of starvation or Ebola. That’s a health crisis. Although it’s more common than people think, with around 700,00 people in the UK living with autism, it’s hardly an epidemic that’s draining healthcare resources. Just because more people are being diagnosed now doesn’t mean it’s becoming an ‘epidemic’, it just suggests that diagnosis is getting better as more is learnt about the condition and its presentation.

Then there’s that final statement, about finding the missing pieces of the puzzle. Ah yes, the good old puzzle piece. “Until all the pieces fit” is a phrase I see often. You see, my daughter is not a jigsaw, all jumbled up, or with pieces missing. She’s not incomplete. She is different, not less and I have accepted and embraced that. The puzzle piece has become the universally accepted symbol for autism, but I hate it! I feel it implies that there is a search for that missing link to being neurotypical and I will not use it. I much prefer the neurodiversity symbol that is being used more often.

There are many other reasons as to why I do not support Autism Speaks, but I’d be here all day. Google is your friend, people!

This month, I will be wearing whatever colour I bloody well feel like on that given day. I will change my Facebook profile picture to one of many colours that does not feature a puzzle piece. If you are interested in raising awareness and acceptance, I urge you to do the same. If you choose to ‘Light it Up Blue’, that’s your shout, but please, first look some more into the background and decide if you wish to affiliate yourself with a group like Autism Speaks. Speaks for who? Not for me, or my Tink, thank you very much.

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Unhinged Mummy (aka Janine Woods)

Very insightful post. I had no modes that autism speaks sees autism as that way. How odd.

I would agree with most of your post, TM! And I kinda hate the whole Autism Awareness Month….even after I was really delighted there was a month to finally promote awareness for autism because no one knew about autism when my Kiddo was first diagnosed. I’m not a big fan of Autism Speaks, either. Two other organizations with the same agenda merged (sometime in the late 1990s?) to form Autism Speaks and it seemed better to pool their resources. The founders are grandparents who also happen to be television executives so…..they do know how to market, don’t they? Since my… Read more »