You Will Never Speak For Me

Okay, I’ve been inactive, I’m not even going to explain myself on that one this time because it’s a common occurrence, it’s what being a man with limited resources and unlimited depression does when he has a blog. I’m back, with a vengeance I might add, to put in my two cents on Autism Awareness Month, particularly, how many of you might be approaching this the wrong way. My first point, is your profile picture covered with a blue filter? Well then, read on, you might reconsider that filter by the end of this article.

Autism Awareness Month, largely paraded by the charity Autism Speaks, is about raising awareness of the trials and tribulations that come with autism, both for those who are on the spectrum and those who have loved ones that are. Speaking as a man both on the spectrum and related to another who is, I won’t deny, there are trying moments in life that were daunting to us but perfectly normal events to the other kids in classes or colleagues at work places. Social etiquette, for example, eluded me for so long that I got angry at other people for having it when I did not, I came to think of myself as living in a world of imbeciles, not realising that not only did the world struggle to understand me, I too struggled to understand the world. However, my biggest qualms with Autism Awareness can be summarised thusly:

  1. People are AWARE, what they lack is UNDERSTANDING
  2. Autism Speaks

I shall challenge these points in reverse order to how they are listed, because Autism Speaks is to autism what Donald Trump is to Mexico – hilariously misinformed and full of hatred towards their people.

Autism Speaks is not a happy jolly charity as they might have you believe, their solution to the struggles of the autistic community would be akin to Oxfam forming a militia and marching on Syria, Autism Speaks seeks a ‘cure’ to autism, a ‘prevention’ of it. Don’t believe me? Check their ‘About Us’ section on their site:

“Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism”

Direct quote. Causes, prevention, treatments and cure. You know, like it were a disease. Autism Speaks has been called out in the past on recommending things such as bleach enemas and allowing parents to express their desire to ‘fix’ their child, sometimes with said child in the room. Now this, this is personal, this isn’t just social justice speaking, this is “You do not tell me that I, my brother and thousands of others are broken human beings you need to fix, we are fucking beautiful”.

You know what you’re saying when you want to cure someone of autism? You’re saying you want to kill them and replace them with someone similar but normal. Autism affects how someone sees the world, how they think, what they like, what they don’t like, what knowledge they have, what things they will remember, their hopes, dreams and fears are all dictated by autism, it is not a disease or curse but a whole other way of existing as a human being. I have tried to explain this to people as being left-handed in a right-handed world. You may have challenges trying to be like the others but in the end, you find a way and your way is different but it works just the same in the end and there’s no reason a left-handed person is less valid than a right-handed one. You could try to make that person right-handed but it would change how they do everything, it would mean they had to relearn everything they ever knew about how to interact with the world and your friend or family member would be someone entirely different for it. In a sense, you would replace them with someone you perceive to be more normal, or rather, more like what you think should be normal. If you want to screen for autistic children or find a way to fix them, you want them dead. This isn’t a disability, this is a way of being human that you cannot understand and that is why you want us dead.

So you might understand why I say we don’t need your awareness campaigns, much less do we need a charity that thinks of us as a blight to be remedied. Autism and aspergers aren’t things you need to raise awareness for, they are things you need to raise understanding of. I generally scoff at awareness campaigns, who at this point is still clueless what breast cancer is? We KNOW what cancer is, we KNOW what diabetes is, we KNOW what Parkinson’s is, teach people what it means to live with these things and how to help those who have to, make people understand why diabetes isn’t just “Ate too much sugary food” or why cancer isn’t just “Thing that can kill you but if you take pills and go bald, you might not die”. The ALS Ice Bucket challenge was the last awareness campaign I agreed with. Why? I HAD NO FUCKING IDEA WHAT IT WAS. Awareness is Stage One, Stage Two is education. Imagine if your teacher taught you to read by pointing at a book repeatedly and went
“That’s a book. People read those”
Ok great, how? Why? Where do I get a book? What is a book for?
“That’s a book. People read those”
I am aware that is a book, tell me more.
“That’s a…”

Also, putting autism in a class with cancer and motor-neurone disease in that it is something you raise awareness for, you class it as a problem. If a charity is ‘raising awareness’, it is telling you there is a problem to be fixed. If there is a disease we cannot cure, we need to be aware of it. If there is a country ravaged by war, we need to be aware of it. If there are people dying in ways we didn’t realise, we need to be aware of it. What the fuck do we need Autism Awareness for? I’m aware it exists, what else will you do Autism Speaks? Nothing, except witter on about how hard it is to deal with your kids because they’re noisy or won’t keep their jumper on or don’t like other children.

I’m sorry to get so angry, except I’m not. Autism Speaks does not, has never and probably never will speak for the autistic community, it speaks for those who wish there wasn’t an autistic community, and I personally am glad there is an autistic community. I tried talking this over with my brother, who also has autism, and he thought perhaps he wouldn’t miss it if he didn’t have it and I had to try to explain to him he couldn’t perceive not having it because having it has shaped his entire being. The idea of being neurotypical is just inconceivable to me, it would not be me, he could have my face and voice but he would have different friends, feelings and interests. Please, for goodness sake, do not partake in lighting it up blue, “Go Red Instead” is a counter-campaign about raising awareness of Autism Speaks, who, if they want centre-stage this month, let’s make you aware that they’re not just about helping families live with autism, they’re about helping families NOT have to live with autism, helping families abandon autistic children, helping families mutilate autistic children and poison them. Check it out at the link below and please, remember that autism doesn’t need a cure, it needs people to realise that we are just like you, seek to understand us like you seek to understand your fellow men, for we are they.

6 thoughts on “You Will Never Speak For Me

  1. Who says that turning the profile picture blue is supporting a particular charity? I for one am not supporting any charity. I am however supporting many people that have autism or a form of it, that live day to day with the struggles they undergo. My foster sister was so severlt autistic that she is now in a care home and will never be able to look after herself. I am not looking for a cure but am helping people understand that when a child with autism is screaming in the middle of a shop, they are not a ‘naughty child’ throwing a tantrum. That’s how most people will see it as you can’t ‘see’ autism. People do need to be made aware and have more of an understanding so they can be more empathetic rather than judgemental.


    • I agree. I understand it can severely impact on lives, of course it can, I just believe that beyond the raising of awareness, more needs to be done to make people not only aware but understanding. I just do not support the “Light It Up Blue” campaign as this was devised by Autism Speaks, who I am boycotting for their views on autism


  2. And adding to Oldemanwolfe123,

    I honestly can say I have seen and heard the things that Autism Speaks has done, or said towards families with Autistic children.

    My own son had a teacher that was a great supporter of “Light it up blue” and part of the Autism Speaks Canada branch, and she treated my son like he was stupid. Giving him coloring books and not including him in the other childrens lesson plans.

    I had him transfered to another school, and they insisted on a placement test to tell them what classes he needed to be put into. Well we agreed and he was placed in the higher learning classes.

    He is only in elementary but he learns and can even excel at a highschool learning level. He even taking my old highschool work corrected something I had done wrong.

    Autism is not a disease, its a way the brain is wired. There is no cure, and there is nothing to fight for a cure for.

    Because what Oldemanwolfe123 is trying to point out “Anonymous” is that the cure for autism, is acceptance. Acceptance and care. Not to just label them as sick, not to tell them they need to be fixed, but accepting them for who they are faults and everything.

    Sorry by the way Oldemanwolfe123 for making this comment, and possibly any embarrasement it may have caused, I just wanted to put my two cents in the matter as well.


  3. Well said! As a mother of an autistic child I already know autism; what I have learnt this week however, thanks to bloggers like yourself, is about Autism Speaks. They stand for everything I am against when it comes to autism and I was unwittingly caught up with the whole LIUB thing. It’s possible that I didn’t previously know anything about Autism Speaks because it is an American organisation and I am British person currently living in the Netherlands.

    I have to say that I observe big cultural differences when it comes to autism. I find the Autism Speaks approach to be typically American (I realise not all Americans think that way!). The general idea that autism is some kind of disease that has a specific cause and must be cured is, imho, very American. Over here in Europe that kind of attitude is a lot rarer. Europeans tend to think ‘OK, here is a group of people who experience the world in a different way to the norm, how can we best accommodate these differences for everyone’s benefit?’. Also therapies like ABA, which I personally abhor, are virtually unheard of in Europe. My son has been to several different schools and is currently at a school for autistic children and we have NEVER encountered it. I only know of it through some studies I undertook and I was shocked when I read about it.

    Anyway, I for one appreciate that bloggers like you have brought the whole issue of Autism Speaks to my attention.

    Liked by 1 person

  4. P.S. I do however also agree with the anonymous commenter above. Most people do not know enough of even the basics of autism. Everyone wants there to be greater understanding and any kind of awareness campaign can only help that. The more people are talking about autism, the more understanding has a chance of getting through.

    Liked by 1 person

    • This comment and the one above are so basic, yet say so much!

      It is true that everyone’s opinions are valid and even encouraged in debates and life itself, and everyone view things differently.

      I do also Agree with Anonymous in a way, though my view will more then likely always stay in a way the same, but you are absolutely right.

      Un derstanding can only come from education and I commend you for seeking to educate yourself, and I try to educate others as well.

      I am not trying to say any one else’s opinions are wrong, or right in any way. But I believe we all need that level of education that lets us see what something is on a more advanced level. As does Oldemanwolfe123 I am sure.

      And I would love to know more about your son and the things that have been done to help him, as I live in Canada, which in its treatment of Autistic people is very much the same as America’s…

      I am looking for different ways to help him manage his “problems” with the children and adults that treat him differently and tell him he needs to be “Fixed” because he has come home crying on more then one occation because he is discriminated against.

      Which is one of the reasons I have started speaking out against the treatment of autistic children and adults in Canadian and American society. Shoot me an email if you do not mind and maybe we can talk about our sons and come up with some ways to help them further their confidence in their own minds.


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