Does Autism Speaks Really Speak for me? #2: Obviously Not and Today they Gave Me a New Reason Why….

They say nothing says momentum, milking, and capitalizing on acclaim and attention like making a sequel to your critically acclaimed work. Nothing says ‘Highly Anticipated” like making a sequel to a highly praised movie or a multi-platinum album. Just recently, Eminem released a sequel to his critically acclaimed “The Marshall Mathers LP” and album that made parents everywhere cringe, an album I begged my mother for with no success, an album that I had to sneak into my house in the form of a burnt copy thanks to the dawn of commercially available CD burners in that day. Movie studios are notorious for making sequels for the sake of capitalizing on a films success however, few will make sequels for the sake of expanding a universe that has a lot of potential to grow and most importantly, resolve any conflicts that were unresolved in the previous film.

This article isn’t about Eminem or my favorite movie universes, this blog will expand on an older blog post that I wrote several months ago that shed my views on an organization that does absolutely NOTHING useful for the Autism community, as a matter of fact this organization nothing but perpetuate stereotypes and creates a fear of a severely misunderstood spectrum of disorders. Several months ago I wrote a blog post called “Does Autism Speaks Really Speak for me?“. In this post I listed all the reasons why I was so strongly against Autism Speaks and this morning I stumbled upon a few things that have furthered my disdain for this organization.

I first stumbled upon this blog post below from a former employee of Autism Speaks who quit upon reading the organization’s most recent article.

John Elder Robison had worked with the organization for quite sometime and upon reading their recent post realized that his views of the disorder were not in line with the organization’s view of this disorder, as a matter of fact it wasn’t until I read the article for myself that I realized just how badly out of touch the organization and it’s founder Suzanne Wright is with our community. Below is this said article that has sparked John’s resignation from the organization and before you read this I must warn you, it can be a bit hard to read, especially if you’re on the spectrum.

Now before I start ripping this lady to shreds, she does raise a very important point about the complete and utter lack of federal funding that goes into research about the disorder. It is one of the least funded childhood disorders, In 2012, the National Institute of Health’s budget was $30.86 billion of this only $169 million went directly to autism research. This represents 0.55% of total NIH funding. The point of this article is a call to Washington to really pour their resources into research on the disorder the same way they would for other childhood illnesses like diabetes and cancer. However, this lady lost me here,

“This week is the week America will fully wake up to the autism crisis.”

And here,

“This is autism.

Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.

This is autism.

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.

Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.

Maybe their child has been trying to bite them or themselves.

Maybe they can’t afford the trip to a doctor specializing in autism.

Maybe there is a waiting-list for ABA, speech and OT.

Maybe their insurance won’t pay.

Maybe they don’t have the money to pay a special lawyer to fight for school services.

This is autism.”

While there is a lot of truth to the latter statements, it should be noted once again that these stories and statements only paint a picture of the extreme end of the spectrum and don’t tell the full story. These statements are merely a culmination of stories from parents who struggle to raise their children who are wired differently but Autism isn’t only about the parents, it is about the people who live with the disorder EVERY SINGLE DAY OF THEIR LIVES!!!!!!!! The people who have a story to tell but aren’t able to communicate it the way we as a society expect them to, the people who get laughed at or looked at funny because they need to stim in order to order to relieve tension, the people who want us to know that it’s too loud or the lights are too bright or that this stupid coat agitates their skin or that their pants feel weird but they don’t have an effective way to communicate that so they get upset an break down, the people who are often doubted because on the surface they seem like they have no place in society.

This article is does nothing but spread fear, it wants the government to look at Autism as a crisis, an epidemic, something that needs to be attacked and dealt with for the sake of easing the suffering of millions of parents. This article is perfect example of an age old problem of people associating “Autism” with “Struggle”. Autism isn’t a struggle, it is a very complex way of living that our government should be pouring its resources in to figuring out accommodate rather eliminate (hey that rhymes!). In all seriousness though, to say that Autism is all of what was listed above is extremely inaccurate. I could write an entire dissertation of what Autism is but I realized that a picture speak a thousand words so I wrote this blog post below with several pictures to get that point across,

This organization is run by people whose sole purpose is to give a very omniscient view of what Autism is and how to approach it. There has seldom been any resources on the site that have come from someone on the spectrum on how to look at Autism and most importantly how to embrace it. The site has two types of parents that contribute stories, the parents that brag about how much they love their Autistic child and how they’re the best thing to happen to them and how their child is better than every other child, the latter being parents who are all like “woe is me” and speak doom and gloom about their child and how everyday is a struggle and how they’re miserable and how their Autistic child ruined their perfectly good family and how their perfectly good partner left them. To the former, your child isn’t some celebrity and if they had a means of communication that works for them they’d tell you to stop bragging about them and to the latter, has it ever occurred to you that your partner is a coward and that if he or she can’t handle the child that they were blessed with or the cross that they were given to carry than maybe you need to make better choices about the people you drop your pants for.

Now before I get carried away about the parents of children with Autism that annoy the living crap out of me, let’s get back to throwing Suzanne Wright under the bus shall we? Autism isn’t a plague or an epidemic or a wide spread problem that requires the full force of the CDC (Centers of Disease Control) to contain and eliminate, once again it is a way of living that we as a society need to learn to accommodate and that can only be done if you allow us people on the spectrum to play a vital part in creating those accommodations. Distressed parents, Behavioral experts, and Autism speaks don’t tell a complete story. They tell a very generalized story with several holes that lacks substance, emotion, and most importantly, the power of experience and a first person account that should be used to fund personalized approaches to how we ease the way of living for rather than trying to build a one size fits all model based on generalization of a disorder we’ve yet to truly understand.

If you’ve met one person with Autism then you’ve only met one person with Autism, I’ve run this expression into the ground and I shouldn’t have to keep repeating it over and over and over and over again. This should be the common approach to the disorder because let’s face it, though your Autistic brother or niece or nephew or cousin shares some similarities with that other kid with Autism that you are responsible for whether you’re baby sitting, working as a teacher, or working at a camp or recreational program, they are two completely different people with two completely different types of wiring and should be approached as such. When you write the crap that Suzanne Wright writes (Tongue twisters yay!!!!!!), you are painting the one picture that makes parents everywhere fear having a child that might end up being diagnosed with the disorder some where down the line. Yes there does need to be a better national plan that is centered around creating accommodations for children on the spectrum and granting necessary funding to families that may not have the resources to bear the financial burden that is early intervention as well as paying for any need asstive technologies  however, this should NOT be fueled by fear of something we don’t fully understand and it should not be driven by a perception of Autism as an epidemic or a crisis. The utter lack of funding for creating a nation plan is a crisis but Autism is NOT a crisis. Cancer is a crisis, diabetes is a crisis, AIDS/HIV is a crisis, if it has the potential to drastically shorten ones life span then it is a crisis, Autism may occasionally come coupled with other complications you’ll never hear of someone dying from having Autism. The way our society has been trained to look at Autism needs to be eliminated. We’re not doing people on the spectrum any favors by creating an unnecessary fear of what we don’t understand. I shall end with this quote,

“If I could tell people one thing about autism it would be that I don’t want to be this way but I am. So don’t be mad; be understanding. I think people don’t like things that are not like them or look funny. But we are not all the same and why would we want to be?”

-Carly Fleischmann

For those who aren’t familiar with Carly Fleischmann, Carly is on the spectrum and is non verbal. On the surface she seemed like your textbook Autistic until she was given a speech device and with years of encouragement from her parents and her therapists she has now gone on to be a very powerful advocate for those on the Autism Spectrum. There are many other stories of those that have risen to fame through their ability to communicate with the world through speech devices such as Naoki Higashida who wrote the now popular book “The Reason I Jump” which has now been translated from Japanese into several languages worldwide and many other stories waiting to be heard when given the right accommodations. These stories however are for another blog but to end this, I IMPLORE of Autism Speaks to change their omniscient perception and presentation of what Autism is and what to do about it. Your catch phrase is “Autism Speaks, Now it’s Time to Listen”, maybe you’re the ones that need to listen to what Autism says because I guarantee you it will bear a very stark contrast to the message you have been sending for the life of the organization. Stay classy people…

3 thoughts on “Does Autism Speaks Really Speak for me? #2: Obviously Not and Today they Gave Me a New Reason Why….

  1. Pingback: All I Want For My Birthday is a Big Booty Hoe (A Look Back At an Epic Year of Blogging) |

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