Blue, A Guest Post

A friend who is autistic and is a parent of a child on the spectrum asked if I would share her words about blue, Autism Awareness Day and how it makes her feel.

I have nothing of value to add about Autism Awareness Day, but she does. She asked to remain anonymous. I offer her words as she sent them to me, unedited.

blue

People have said that it doesn’t matter how you raise awareness, as long as you do. I disagree. Autistic people, their families and friends have spent a long time fighting stigma and spreading helpful information, true “awareness”, while other groups have spread fear, lies and hatred.
That group started a campaign for World Autism Awareness Day called “Light it up Blue.” They sold lightbulbs, put blue on their facebook profiles and generally just sent a lot oftraffic to their own site, to push their own agenda. And for two years, I have fought it on the internet. For two years I have been told that the problem is ME. *I* need to change, or accept, or lighten up. In other words, ME, the autism parent of a kid with autism, needs to sit back, shut up and be grateful for whatever attention I get. In other words, on World Autism Awareness Day, the autistic community should accept being treated like they are every other day of the year. This day isn’t about autism any more. It is about people who don’t understand pretending that they do.
Even the UN has bought into this new campaign. Hijacking an event like this on this scale is tantamount to terrorism. I can hear the backlash and hate at this statement already, but think about it. A day to celebrate autism and get informed is now owned and trademarked by the one group out there actively seeking a “cure”, promoting eugenics and not including any autistic people in their organization. They have completely taken over this day and made it their own, and big celebrities and international landmarks are buying in. To rephrase in case you still don’t get it: The Autistic community has been CUT OUT of World Autism Awareness Day. Search WAAD, or even worse “Light it up Blue” and guess where you go?
This year I will have twitter silence today. I really am “blue”, if blue is the colour of sadness, despair and disgust.  Enjoy your party. It isn’t my party. And as always, Autism Speaks does NOT speak for me or my family.
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38 thoughts on “Blue, A Guest Post

    • Thank you for commenting and reblogging. I have seen a lot of other posts from folks who feel the same way. It seems more people are starting to push back against the blue light crowd.

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      • Yes – it’s great that people are starting to understand. Sadly I think we still have a long way to go :-(. But at least with social media and the like, we don’t have to feel so alone 🙂

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      • There is a long way to go and some views are deeply entrenched. Social media is so great at finding other voices that will help us spread messages that counter the negative impressions of asd and discuss why a cure is not what everyone is seeking. Thank you for sharing your views.

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  1. I totally LOVE this – thank you. I fought hard yesterday and the days before to do something different…so I went PURPLE! My kiddos has ASD and she didn’t want Blue she wanted Purple so that is what we did. This is so awesome!!! Much love from my family and page on FB at My Journey Through Autism. I have been dealing with Autism for almost 8yrs with my husband and 3yrs with my daughter (since birth) and I can assure you this “organization” doesn’t do jack all for us in Canada to help break the stigma at all! Parents need to help break that barrier down by doing our OWN thing – WE live with it every single day and that is the BEST way to get people to understand – a day in the life of us the parents and caregivers of these fine awesome kids and adults!

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    • I am glad to hear you went purple. How did you go purple? Was it all purple clothing?

      A year ago I was thinking about blue hair, but not this year. I was very pleased that my friend asked me to post her words, because AS doesn’t mean much in Canada other than fundraising. All the local supports for us were available from Autism Ontario and I am so pleased about their “Raise the Flag” campaign this year.

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  2. YES YES YES! Finally – i am so GRATEFUL you are bringing this to LIGHT- clear white light. autism speaks is the old DAN- and we can all google DAN protocol.
    Dan were wolves, promoting unsafe shady unproven practices to “cure autism” remember chelation and the horrifying secretin treatments??? Dr Sidney baker? They preyed upon scared grieving parents , promising PROMISING CURES. They asked for cash. The DAN PHARMACISTS, nutritionists, drs, – all whom were called “DAN SPECIALISTS- “worked together- in an unscrupulous fidiciary manner that harmed children. There was no promoting healthy therapies or focus on increasing kids’with autism self esteem. And when they got bad publicity they went underground, changed their name and called themselves Autism Speaks. BS! My ex spouse worked with DAN, his uncle was a DAN PHARMACIST- and they chelated my son to ” cure ” his autism. Before chelation, max had a normal documented EEG, after DEC 2006 chelation with DMSA- my son had seizures and a new abnormal EEG, a new seizure disorder and a new brain lesion on his logic side of the brain. Gone was his stunning ability to do intricate puzzles and math. The autism remained. The chelation took away his splinter skill/ his autism ” gift”. Max manages his autism very well and he’s a terrific kid. But the brain damage is the real problem. And not a day goes by that I don’t feel so much anger toward DAN/ AUTISM SPEAKS. Their DAN PROTOCOL. Hurt my child. Blue indeed.

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    • Thank you, Andrea, for commenting and offering the background. I often forget that AS absorbed/merged/combined other organizations. I am so sorry to hear about the pain that DAN created in your life. Chelation is such a brutal thing to put anyone through, never mind having it done to a child.

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  3. Some great responses here. I’m not sure that having an actual “day” is a bad thing, just as we have days for cancer, remembrance, Christmas ,etc, Heck, there’s even an official UFO day. I’m just not sure what the tone of the day is.

    I guess they thought blue because pink and yellow are so obviously taken. The problem is that the other colour days are for Cancer. You don’t see a colour celebrating blindness or deafness or dyslexia or just diversity.

    We have a “Day”. I don’t think we should lose it as it’s a great opportunity to get our community to be recognised. I just think that we need to decide what we should do with the day, what our message should be.

    I don’t think the message should be Acceptance. It sounds too much like tolerance for my liking. Instead, why not use the day to celebrate;

    – Outstanding achievements by individuals with autism.
    – Outstanding achievements by people FOR people with autism (these could be doctors, care workers, employers, teachers etc).

    Lets not fill the day with silly and random messages, instead, let’s own the day and make it work for us all.

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  4. Thank you for commenting, Gavin. I always have a nagging voice when I hear acceptance, because there is always the choice not to accept. Or to accept only one small piece of something bigger. I think you are on to something about a celebration of achievements and it could be paired with the message that we still need to go further down that road. When I hear that parents in the US may be get ABA therapies for their kids funded based only which state they live in, that is something that needs a lot more attention and awareness.

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  5. Pingback: Feeling blue about lighting it up | that cynking feeling

  6. I totally identify with the writer, I am on the spectrum myself and I do write about the subject from time to time because it is part of me but I do have a problem with others who seem to be using autism for their own gain. The “cure” promise angers me, some of us, including myself, don’t want to be “cured. ” I am proud to be me. We are a diverse and special ( in a good way) group who needs to accept ourselves for who we are.
    We on the spectrum seemed to be left out of the discussion while others talk about how our existance effects them.
    Thanks Gingerdad for sharing this. I hope you don’t mind if I tweet this!

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    • Thank you for stopping by and commenting. Please do tweet about this.

      Not being on the spectrum, I recognize that I have a different perspective and different obligations. For me that means listening to people who have different experiences. I am not interested in a cure and I see the threats implied by telling people they need to be cured. If people on the spectrum feel both threatened and not accepted, those voices need to be heard.

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  7. I was just reading Katrina’s blog where she mentioned your post. These organizations are just promoting the wrong message, I think. Instead of despair, pain and other downsides of autism, they must show the world how a person can live with autism too. Autistic people need understanding more than sympathy.You and Katrina are really doing a great work.

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  8. Thank you. The writer is very brave for wanting to share her views and I am grateful she wanted to share. There is a lot of discussion about what awareness and acceptance mean. This is one person who is saying that it is much more complicated than just saying let’s be aware. Thank you for your comment.

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  10. Pingback: Raise the Flag for Autism on April 2nd in Ontarioan | Gingerheaddad

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    • Thank you so much for sharing this post! I was humbled when the writer asked if I would post it. It’s vital that we make sure that we amplify the words of actually autistic adults and children.

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