Friends Don’t Let Friends Light It Up Blue

FDLF

What a perfect sentiment.  Friends don’t let friends Light It Up Blue.  I saw this quote today on the Thinking Person’s Guide To Autism Facebook page.  And so I asked if I (or more accurately as it turned out, my husband), could make a meme of it.

Friends don’t let friends light it up blue.  Why?  Because the whole concept sucks, from start to finish.  I have blogged on this before, and sadly, not much has changed, so today, as we make this meme, and brace ourselves for April, I will limit myself to dot points.

* Light It Up Blue is an awareness campaign designed to scare people into donating money to Autism Speaks, a charity in the United States.  People in Australia (and other countries) usually do the campaign to raise awareness (see below point on awareness), or to raise money for another charity and/or business and/or business pretending to be a charity.  There are plenty of those last ones around, trust me.

* Autism Speaks sucks dogs balls.  Despite over a decade of adults on the Autism Spectrum protesting, Autism Speaks still refuses to treat people with Autism like people.  They still, to this day, make videos and have entire campaigns built around the idea that Autism is something to be feared.  That if you do not donate now, Autism will take over the world.  In a really bad way.

I mean – just watch this shit will you?

We are not taking over the world (yet), we are not to be feared, and Autism is. not. stealing. your. child.  It is not wrecking your marriage (take some responsibility will you?), and it is not bankrupting you (accept your child, and those 40 hours of therapy you only think s/he needs will dwindle down to one or two – generally).

* For the most part, adults with Autism hate Autism Speaks.  And slowly, parents of children with Autism (whether they have Autism or not), are also starting to see the light (edited – ha ha – that was totes not intentional), and start to hate Autism Speaks.  It is a horrible charity.  We feel sick when reminded of it.  And so whenever there is any mention of “Light It Up Blue”, we are reminded once again about how the world sees us – as a burden.  As something to be fixed.  Or eradicated.

How would you feel if the whole world supported a campaign to have you eradicated?

* We do not need Autism Awareness.  If people do not know about Autism by now, then the rock they are living under is not going to be penetrated by any awareness campaign.  We need Autism Acceptance.  (((For the die-hards, acceptance really includes awareness when you think about it anyway))).  We need acceptance.  We need people to know ways in which they can help facilitate our interactions with the world, rather than campaigns that teach them that we are to be feared.  Or pitied.

Here is a video made by Autism Speaks three weeks ago…

Does this seem like an uplifting video to you?  Why the focus on the life of the gentlemen who are not allowed a voice?  They could speak, if allowed.  If given assisted communication.  If their caregivers were not so hell bent on “speech” rather than “communication”.  Everyone communicates.  Newborns straight from their mothers womb communicate.

Or why not hear the story of the young man making the video, who is also on the spectrum?  Why didn’t we hear his story?  No, that information was left for last.  Because being inspiring doesn’t lead to donations.

Being inspiring is bad for business.  And Autism Speaks is all about business.

And they don’t care who they hurt in the process.

You can learn more about the atrocities Autism Speaks is responsible for by having a look around the internet.  Things such as not consulting Autistic people, not hiring Autistic people, and firing mothers of Autistic children when they need accommodations.

I support Autism Acceptance.  I urge you to do the same.  For all our sakes.  You don’t need to spend money.  Instead, write a letter to your local politician telling them how vital Autism Acceptance is, and that we need a funded campaign teaching the community about it.  We need police to learn how to deal with people with Autism who are in crisis so that they don’t shoot and kill them.  We need GP’s and other medical professionals to learn about the communication difficulties people with Autism have so that we can receive decent health care.  We need the general public to learn that we are all different, that we are not all Rain Man, that we have strengths when we are given the supports we require to use them.

If you must open your purse, spend your money on a cup of coffee or a bunch of flowers for a parent of a child with Autism.  Or take an adult with Autism out for coffee and have a non-judgmental chat with them.  You might be surprised how much this can help.  It’s the little things that count.

Note 1: Ok, so my dot points got a bit bigger.  My apologies.  I’m a writer.  This rambling thing is what I do.
Note 2: The Thinking Person’s Guide to Autism page could remember seeing the “Friends don’t let friends light it up blue” quote somewhere, but not where.  I like to give credit where credit is due, but unfortunately, neither of us know where it is due…  If it is you, or someone you know, please let me know!  I imagine more than one person has said it however, so there may end up being many names here 🙂

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Autism, Politics
16 comments on “Friends Don’t Let Friends Light It Up Blue
  1. ouremuk66 says:

    That I am autism “commercial” made me feel sick, it’s the worst kind of scaremongering.

  2. K says:

    I don’t think there should be just one day dedicated to Autism Awareness, or even just a month, it should be on going. I also agree that Autism Acceptance is a much better goal than Autism Awareness. In districts where “special services” schools exist, as they do here, it is important to make people, children in particular, aware before they are able to accept. Many have never even heard the term Autism until we introduce it in school. Beyond the issue of wording though, you paint a hopeful picture of individuals with Autism, and I hope you’re right. However, even you must agree that there are varying levels of functioning depending on where a person falls on the Autism spectrum. I’ve met parents who are strong advocates for their child who was diagnosed with Autism, who , without their megaphone screaming for their child’s equal treatment would probably have been treated “normally” (I don’t have a better word at the moment) because there were no detectable differences from others of the same age. In my own life I’ve also witnessed the heartbreak of parents with 4 (two sets of twins) PROFOUNDLY AUTISTIC children. They weren’t sad because their children’s grade, behaviors or milestones would never line up with the standard. They were heart broken because 2 of their 4 Autistic children were INCAPABLE of meaningful communication of any kind. Despite the “40 hours of therapy a week” they have remained locked in their own world. No communication, no interaction, no sign of any hope of being able to lead any kind of life other than their current existence. I understand that this isn’t always the norm. That perhaps these children are the acceptance rather than the rule. But you are advocating that their parents should accept them just the way they are and not look for any hope of their “change”. I know they love all their children but it is unreasonable for you to ask parents to accept that and not hope for something more for them; for them to reach their own potential for a meaningful life, whatever that may be.

    • K – I think perhaps you misunderstand me (probably due to my not wording things correctly – this happens a lot – I apologise).

      I do not mean for “acceptance” to mean the same thing as “giving up on”. My own children attend or have attended therapy :). My youngest is about to start speech therapy due to speech and communication issues. Absolutely, parents should do what they can to help their children. As long as it is in their child’s best interest.

      As an example… I stuffed up, back in the day. Before my own diagnosis, just after my son’s diagnosis, I got caught up in “as much therapy as possible is best”… my poor child. He would do five full days at school each week and then travel a two hour round trip two to three times a week for therapy as well. He was exhausted. And quite frankly, a lot of his issues were minor delays – things that he would eventually “get” in his own good time. Others things were things that are, in the big scheme of things, inconsequential, such as making eye contact.

      Right now, my youngest is frustrated because sometimes we do not understand what he is trying so hard to tell us. He requires therapy to help him achieve his personal goal of better communication. My oldest son however, did not require therapy to help him make eye contact. That is a part of him that we need to just accept is what it is.

      It’s about helping when needed, and accepting the rest. And accepting that there is no “cure”. Not that there is no “better”, but that there is no “cure”. Mostly when we talk about people accepting us, we mean – accept us being different, because we will always be different. We may require help with this or that, and therapy for this or that, but even with all that, we will still always be different – accept THAT. Yeah?

      Also – for your friends, I imagine that either one of two things are happening… either a) their children actually are capable of communication given the right tools and/or space to do so, or b) that their children have other issues going on, such as intellectual disability. So often, people see intellectual disability as part of autism, but while it often coexists, it is separate. I can’t speak about intellectual disability other than to say exactly that – it is separate and we really need to stop confusing the two issues. People with Autism can communicate, period. Sometimes they need help, such as writing tools, or communication devices, or simply for us to notice their hand actions or facial expressions – but they can communicate. I hope that makes sense. It’s sort of like, because we have Ehlers Danlos Syndrome as well as Autism, and both conditions can have issues with low muscle tone and stretchiness, it would be easy to say that we dislocate due to Autism, but the reality is that we don’t – we dislocate due to Ehlers Danlos Syndrome. People with just Autism may have issues with low muscle tone, but if they are dislocating, then there is something else going on. Likewise, people with Autism may have trouble communicating, but if there is no communication going on whatsoever, then there is something else going on.

      So anyway – I hope that clears things up 🙂 Please feel free to ask anything, or add anything – and thank you so much for your comment 🙂

      • Brady says:

        “a) their children actually are capable of communication given the right tools and/or space to do so”

        Autism Speaks allows parents to find (and can provide) the “right tools and/or space” …

        You’re article is a rambling mess and very poorly written. If you truly are an adult with autism, shame on you for slamming a program that provides support to families of children with autism.

        • 1. Poorly written? Perhaps. I AM FUCKING AUTISTIC!!! Telling me I can’t write for shit is like telling someone with cerebral palsy that they lack graceful movement.
          2. I have two kids with autism. I love organisations that support families – on the provision that support is not at the expense of the child, or other autistic people.
          So no shame here. Perhaps you’re looking in a mirror. It’s called bullying (see point one).

  3. Mrs Byerly says:

    Your post makes me absolutely sick. You all are what is wrong with the world.

  4. LK says:

    Hi I just wanted to say thank you.

    I started a small business so I could always have something aside for my son who has autism. I quickly learned how fast his funding will run out and so there was a need for me to do what I’m doing. However, as I met and spoke to more people I found that adults with autism and the children who clearly have some type of development delay but are a few points short of a diagnosis, don’t receive any funding or a limited amount and slip through the cracks in our education system and in the public. Initially I wanted to start making donations to help children with autism but I’m finding that these are the people that are in need most and I’m trying to find a charity that will support their cause (if it even exists!) I’m only starting, but if I can be successful in my business venture, I would like to help the ones that slip through the cracks!

    Thank you for your article!

  5. Great article thank you!

  6. Anna says:

    Linda,

    As with all topics, people have different opinions which I respect. I think it brings up conversations on important issues. I agree with some of your points and differ on others. Autism is near to my heart as I teach children with autism. I see such a variation of students on the Spectrum every year yet they’re all the same. I have children who struggle to speak, communicate, socialize and with processing issues. I understand the difference between Autism and other various disabilities. I disagree the Autism Speaks is a negative company. I think there is definitely room for improvement and change within the company. For example, as you stated having some commercials on acceptance would be a wonderful thing. Teaching people to be understanding of autism and the issues that surround these precious children are adults.
    I do differ on the thought that they have to find out what is causing autism. I believe it is essential for science and Humanity to understand what causes this. I believe you said something to the effect of they don’t even have cancer commercials like this. As far as cancer goes I believe I can speak on the topic since I had breast cancer 10 years ago. Cancer does kill and makes us different than other people. I felt ashamed of having cancer, embarrassed about having cancer and different from everyone else. Not a way anyone should feel. I thank God that I was healed and I’m in remission. I bring this up because with autism if you know something is not right and something is affecting the child, why wouldn’t we want to find some way to help them or cure autism. With that being said, I do believe that there should be commercials about accepting an understanding autism without a doubt, because I don’t think autism is going to fade away. When something is out of the “norm” of course we try to find ways to help it’s only natural.
    Think about someone who is gay, people thought of that as out of the “norm” and today it is accepted by mainstream America. I would love to see this with autism. This is where are you going with you. However I do believe that science needs to dig in deep to find out how this occurred and hopefully find a preventitive.
    This is my opinion and belief.
    Thank for stirring up great conversation. This is the only way that we can start the fight for people to understand what ism and accept it.

  7. Samson says:

    complete someresearch (actual data to support your claims) instead of posting your opinion. There’s a whole section on the Autism Speaks website about job opportunities for adults with autism and organizations they can look to, but you say they don’t hire people with autism? Please also show any sort of post that says Autism Speaks have fired parents for needing accommodations for their children. I searched around the internet like you said and have found nothing. The thought is by raising awareness you will begin to increase acceptance as well…

  8. Aaron says:

    You must be a special kind of dumb shit. You can go fuck yourself with your father’s cock. Light it up Blue isnt just about donating. For some people that have autistic children, it’s just nice to know that there are people out there that notice. You’re just a cunt and you should have been swallowed.

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Pissed off since 1995. Mad as a hatter since way before that.

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