You aren’t my friend if you Light it Up Blue

Today is World Autism Day. Today, many people have participated in “Light it Up Blue”. I am not one of them.

Please do not misunderstand. I am not trying to ignore autism. I am not trying to say acknowledgment of autism and the move toward greater awareness is a bad thing.

But you are not my friend if you participate KNOWINGLY in an event that was created by an organization who portrays autistic people as burdens, who for a long time were very anti-vaccine in their rhetoric, who have filmed a then-member of their board talking about her thoughts about killing her autistic child and herself (but didn’t because her NT child needed her), and who silences autistic people, removing the very mention of us from our own stories, because clearly, portraying us as capable would ruin the image they are attempting to portray of us. This organization, of course, is Autism Speaks. If you don’t know the detailed reasons why they do not speak for many autistic people, please read my link here.

Today isn’t a very pleasant day for me. I was, thankfully, spared from much of the Light it Up Blue hoopla. I apparently do well in choosing my Facebook friends, for the most part. But I had a few moments that brought me to unwelcome tears. One of those was a longtime friend of mine (not a very close friend, but still a friend) posting information for another friend about curing autism with essential oils and how antidepressants in pregnancy cause autism. I was hurt, amd how do you explain that? How do you explain “this is hurtful because you believe my neurotype is inferior and needs to be fixed rather an accepted” when you think it should be self explanatory?

The truth of the matter is, I shouldn’t have to. I shouldn’t have to explain that, and anyone who brushes me off as an angry autistic, well, yes, you’re right. But it gets tiring defending my right to exist and be treated like a human being. This goes for many other forms of oppression, too, so please don’t believe that I think this is exclusive to autism. It absolutely is not.

If I were to write a letter to the world about what World Autism day is about for me, this is what I would say.

We have always been here among you. Please do not fear the increase in diagnoses because of advances in medical care. We are not scary, and we are different, but we are no less worthy of love and understanding. We deserve to exist and to be accepted for who we are. We need access to medical care of our choosing. We need a voice that belongs to us, not our parents, caretakers, teachers or therapists. Listen to us. We may not all speak your language. We aren’t a monolith. Pay attention. And learn.

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19 thoughts on “You aren’t my friend if you Light it Up Blue

  1. Thank you. I am listening. You help me. And I listen to my child, to her way of communicating. I respect and appreciate you and others who have helped me to understand. Today, I want to say to you, thank you; you are not alone; I am listening; you are respected, accepted, and appreciated. I say it to you as I say it to my child. Thank you for being you.

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  2. this was beautiful. And I had a friend actually post on my timeline about “a certain diet” curing autism. And he knows where I stand on this subject. I was extremely offended and thought he was a good friend. then he proceeded to call ME blind!!! I told him not to belittle me on something that I know much more about than he does. Of course this friend also thinks you can just eat a certain way and keep all things away. and that medical science is evil, etc. And that vaccines are a conspiracy to keep us sick. Yea he thinks Autism is an illness, I proceeded to post stuff like Temple Grandin’s speech for TED “The world needs all kinds of minds” on his timeline and told him to actually get to know more than one autistic person. And told him, also that he is posting on and autistic person’s page telling ME that I need fixed. Thankful that I also have other friends who actually came to my rescue a bit. it really gets tiring fighting against all this ignorance.

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    1. My god…with a friend like that, who the hell needs enemies around? A “frenemy”, as opposed to a true friend, is more like what this person really is. You don’t need him!

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  3. I read an article in Newsweek about people with depression, schizophrenia and so on protesting the label of “mentally ill.” For them it is who they are and how they see the world. It’s the same with autism. It’s not a burden, even if in either case there are more challenges than usual.

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    1. Also, what society doesn’t fully understand yet is the beauty of the brain’s ability to adapt in a wide variety of scenarios, autistic or not. Sure someone may be autistic, but I’ve read blogs and forums where many autistic individuals were eventually able to pass off as “normal” as they grew up…albeit through a longer process than is considered “normal.” Here, the brain had to have, in its way, adapted to what it was experiencing.

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      1. Uh, sure, except that feeling like they had to “pass off” as normal, and expending energy doing it, ISN’T A GOOD THING.

        I’m more and more convinced that so many of us only manage to “pass” because autism is *wrongly* conflated with not really being able to do much of anything or communicate much at all. And so being able or communicative *in any way* is enough to make a lot of people not recognize autism.

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      2. Precisely. Although I can see the argument of, hey, I grew up so I can do things far easier now at 32 than I could at age 7, I think the argument that “looking normal” is the goal is a gross one and takes so much mental energy.

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  4. They never were anti-vaccine. I don’t know where that idea is coming from. If you are worried of your portrayal as a group of activists, mediate your own image, but don’t pretend you portray the autistic group as a whole when it comes to therapies/cure. Many of us actually do have challenges/impairments that even last into adulthood, that cut off opportunities for us and stop us from doing what we want. Serious developmental and aptitude impairments should be fixed, as it is an issue of need. Distributing cognitive ability therapeutically isn’t a negation of existence. There are rights that go beyond just being allowed to try to live. I still don’t understand why one would be hurt at someone posting information that tenuously is intended to apply to them, which really applies to those in dire situations.

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    1. Right. They never were antivax. Except the founders (whose grandson is autistic) supported their daughter, Katie Wright, in her antivax stance. Read more here: http://alyric.blogspot.com/2009/02/katie-wright-autism-speaks-liability.html?m=1

      Also, I am finished engaging in discourse with you. Between functioning language, insistence on needing a cure, and blatant distortion of facts, I am done. This is my space, and as a guest in my home on the web, you will not continue to dominate the discussion with your ableist rhetoric.

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  5. I always tell the anti-vaccine crowd that what they’re saying is they’d rather take a chance on their child ending up dead than their child ending up autistic. An organisation even remotely associated with that kind of viewpoint should not be speaking for anyone, let alone autistic people.

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  6. Reblogged this on The Hippy Geek and commented:
    I won’t speak for people with autism as a neurotypical person, but I’d like to share their own words.
    From me, you are valued whatever your neuro ends with. My daughter was not something to be cured, or prevented. My sister-in-law is no less special – in fact, since diagnosis she has blossomed. Be accepting, not just aware.

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    1. This is excellent. But I just want to let you know that many of us, including the person you reblogged this from, prefer to be called Autistic and not “people with autism”.

      Liked by 1 person

      1. I completely get that. There are three groups that I know for certain prefer identity first language – the Autistic, Deaf and Blind communities. Otherwise, you’re probably safe using person first. Thanks for being so understanding!

        Liked by 1 person

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