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Not Good Enough, Autism Speaks

I watched a video about AAC changing lives of non-speaking Autistics. It sounded great and the title - I Want to Say - seemed to indicate that our voices, the voices of Autistics who type to communicate, would be the main focus. 

My first alert signal came when I saw the Autism Speaks logo associated with the video. It turns out that the video is part of a project – Hacking Autism – which is also an Autism Speaks project. 

But I did not have to know this to feel disappointed. In the first few minutes of the video, Autism Speaks’ favorite statement: “more children will be diagnosed with autism than AIDS, diabetes and cancer combined." 

The comparison is not real, since autism is not a disease and nobody dies of autism (unless one of us is murdered for being Autistic – it happens). 

Then a self-important “autism specialist” says that we suffer, because we are Autistic, much more than anyone can imagine. I am Autistic and I do suffer, not from being Autistic, but from ableist societal attitudes. 

There are scenes of Autistics typing and it would have been great if the producers had focused on what they were typing, how it helps them and how to make it available to more people. After all, the title of the video is “I Want to Say." 

As it has been their practice, Autism Speaks never allow Autistics to say what we “Want to Say." 

Instead, parents are the ones telling the story, their version of it. I would like to hear the Autistic voices, their experience from not being able to understand to being finally heard. 

It makes me sad that the ones who were supposed to be the stars of this video, and who obviously understand what is said about them, are watching this and hearing what is being said.

“Swallowed by his autism”

As if there was a non-autistic person before the autism “swallowed” him. 

“Suffering with Autism” 

Maybe they should have asked the Autistic himself if he suffers. 

“He is very sweet for an autistic child” 

Apparently that mother believes Autistics are, in general, monsters. 

“I love who he is but I would give him a pill to cure autism so he can be happier” 

If you love who he is, there is no “but”. Besides, this Autistic here is very happy. 

“I want him to speak, I do” 

Communication does not mean speech. 

“Their entire existence is a battle” 

I don’t battle autism. I battle misconception, silencing tactics and ableism. 

“Something was wrong” 

It would be better if the statement were “something was different”. If my father still used “wrong” to define me, even a younger version of me, I wouldn’t feel fully accepted by him. 

I don’t think the parents in the video don’t love their children deeply. They are clearly proud of them. But the language is still based on the mass hysteria propagated by Autism Speaks and other organizations. Their children can understand, the parents know that now, but they still speak of their children as if they can’t. 

The parents and the “specialist” want us to see the Autistics, who can now type and be understood, as “close to normal” as possible, because “normal” is the only acceptable outcome. But even as we watch the very few scenes with the voices of Autistics and their accomplishments, the message of burden and the message of “you are better now that you can type, too bad you are still Autistic” remains. 

I can type, I am happy and I don’t see myself as better than, or superior to, Autistics that still can’t. I am not better than Autistics who might never communicate in a way considered satisfactory to neurotypicals (in my opinion, everybody communicates). 

So, Autism Speaks, you did not use children screaming, voice of doom, kidnapping messages, threats from parents to their Autistic children. But you still made your message clear: we are burdens, life with us is difficult, but we can be “almost normal," if we can type like our non-autistic peers. 

I am not “normal” and I intend to remain completely distinguishable from my peers. 

AAC is a great way to include Autistics and other disabled people. It is an asset to us, we can have our voices heard. The video is opportunistic in the way it uses what gives us a voice to send the message that we are still “wrong”. And, despite the fact that those Autistics are typing, their voices are heard only in very short segments. 

The video is also opportunistic in the way it uses minorities, who are more likely to be under diagnosed, to try to appeal to a broader audience. Minorities deserve to have more access to the diagnostic process and in the delivery of services. They do not deserve to be used as a tool to raise more money that will not benefit them. 

Autism Speaks, you failed, again. You silenced voices in a video with the title “I Want to Say." You excluded us using a tool of inclusion. 

Here is another quote from the video, referring to not being able to communicate:

“How would I feel like if I could not get across what I want to get across?” 

They should have asked the Autistics. But they didn’t. Autistics in the video were not allowed to get their message across. They were never asked what their message was, how they feel or even asked to type their names. 

Not good enough, Autism Speaks. Not even close.





About the Author, Amy Sequenzia.


<p>You go girl. I am not Autistic but my son is and I read your posts regularly. My son has a voice and we allow him to speak his mind and voice his opinion. If other parents would see to that letting their child be themselves like tthey do their neurotically children then the world would be a much better place.</p>

<p>As a "high functioning" autistic with two children with autism I want to share some words of wisdom from my four year old to everyone, especially autism speaks: "I have autism. I'm no better than anyone else with autism just because I can talk. We can do everything anyone else can do, but we do it different. Why am I "high functioning" and "better" than others because I can talk? I don't get it, momma. I just wanna be Spider-Man and enjoy being different."</p>
<p>that sums it up. That's the voice of an autistic child. Both my boys are verbal now, but when my younger one couldn't speak, I had too many fights with therapist and specialists about communication. "He needs to learn to talk" they said. "No! He needs to learn to communicate". They apparently didn't see the difference.&nbsp;</p>
<p>Normal is what you make it. Autism isn't abnormal, it's our version of normal. People need to get over this fear of an autism pandemic and learn the forgotten arts of acceptance and unconditional love.&nbsp;</p>

<p>Hi Amy,</p>
<p>I appreciate your voice and agree whole-heartedly with your message. What I'd like to see less of is your "labeling" of individuals. We are all human beings...period. My son is a human being who happens to have autism. I am a human being who happens not to have autism. We have taught him that he is an amazing, loved and respected person. And we understand that all behavior is a form of communication.</p>
<p>I truly care about human kind regarless of their ability. With all due respect, please discontinue the labeling. It promotes an us/them mentality, which to me, leaves room for further discrimination.</p>

<p>I am confused about what "label" you are talking about</p>

<p>Amy - I agree with every one of your criticisms.&nbsp; But it is awfully nice to hear an M.D. - Dr. Traver - say that non-speaking people with autism are intelligent, to hear him recommend typing, and to see people typing with support. So overall, I see both negatives and positives.&nbsp;</p>

<p>I find that it's difficult to address specific problematic statements in works like this; I notice that things like this tend to create seriously problematic undercurrents that the work would need to be recreated from scratch to fix.</p>
<p>By the way, do you have any links or advice for fiction writers wanting to portray characters who use AAC?</p>

<p>Amy makes very important points here. AAC is wonderful, but that doesn't mean that every video made promoting it will be good. And we need to be able to look at that. Kudos to Amy.</p>

<p>Jenna, if you think it's wrong to call myself Autistic, because labeling like that sets up an us v. them, then I hope you never call people things like male, female, man, woman, girl, boy. Because labeling people by gender really sets up some walls between people and creates a real us v them mentality that we need to learn to move beyond. We should just see people as people and get rid of all that gender baggage, right?</p>
<p>Amy, awesome essay! I agree with you completely! It is shameful to do a documentary about AAC and FC and not let the people who use AAC and FC every day come on camera and tell us how they feel about it, how it has changed their lives, opened up their ability to communitcate with others, etc.&nbsp;</p>
<p>I will never recommend that Autism Speaks documentary to anyone because it teaches that AAC is something to hide, not something to be proud of. IT teaches that we are awful tragedies and it teaches that even when we are taught how to communicate we have nothing worth saying, at least not on camera.</p>
<p>I will always recommend "Wretches and Jabberers" &nbsp;instead because it is a movie that shows that people who communicate through FC and AAC are real people with hopes and dreamas and goals and lives who go out and do things like travel or advise politicians on policies. It is a movie that shows the joys of communication and it is a movie that puts the people who actually use AAC and FC front-and-center as the stars of their own stories, not hidden away as soemthing shameful.</p>
<p>You are a terrific writer, Amy, and when I get over to the other computer (I can't share things on my facebook page from here) I will share this article with all my blog readers because it's something people need to read and understand! Thank you for writing it.</p>

<p>Awesome essay Amy and completely agree with you. I think it is criminal how they did a video about AAC and FC but didn't include the people who use this on a daily basis and to me only wanted to portray the stigma surrounding autism/asperger's. I have Asperger's but &nbsp;I too find it easier to use a computer to get my points across especially when blogging( What also drives me nuts is how they portray non-speaking people like you as incompetent and stupid I would like to say to those idiots: is Stephen Hawking stupid because his computer speaks for him and therefore incompetent?? are people who lose their speech to strokes stupid and incompetent?? the answer is no just because someone has no speech and uses these devices does not mean they are incompetent and stupid it just gives them a way to participate equally in life.. I find it appalling that these ignorant ableist attitudes exist all thanks to lies spread in the corrupt mainstream media and certain celebrities who don't know a damn thing about people like us and choose not to because they have profits to make off books and pseudo-scientific frauds and to do that they have to spread fear and lies about autism which only exploits autistic people and their families as we all know.. keep the great work Amy, we need more folks like you speaking out and I think it is wonderful that some are..&nbsp;</p>

I think I see Jenna's point, and I'm glad she is trying to help her child see people as just that: people. But not everyone thinks that way...yet. It would be super nice if society would understand that we were all people. It would also be nice if we didn't also see ourselves as Asian, Black, mixed, White, etc. but as Robin, Matt, Leslie, Chang, etc. But I also think that some kind of description can help define your identity (for as long as society as a whole needs some kind of labeling) and can help others be aware of your differences. (Plus it'd help me distinguish myself from all the Robins in the world!)

With that said, I agree with Amy. Society also needs to understand that being different isn't necessarily some kind of torture and to actually ask the person what they think about all this, maybe even help them out in some way if they really need it. I think that the description of "suffering" "swallowed up by disease" is coming from a lack of understanding or is a form of projection.

<p>Great essay, Amy. I really enjoyed it, and am going to post a link to it on my Facebook page.</p>

<p>You sound very much like me! I said it in my post today, that Autism is not like a diagnosis of Cancer. Please link up your posts and share with my readers as well!</p>

<p>I understand the Curebies want to own the whole world, but they simply cannot! &nbsp;As a young man who has only recently learned about this whole ordeal in 9th grade (11th grader now), I am APPALLED to hear about all these murders, cover-ups and plots!!! &nbsp;This is sooooo messed up, this conflict is giving me Depressive headaches, I even sleep for only two hours since Easter. &nbsp;I only pray that these negativity-based groups just&nbsp;</p>
<p>"Find a new song".</p>
<p>Thank you for hearing me out.</p>

<p>Why do non-autistic people think they can tell us not to label ourselves? I am autistic, it contributes to who I am, I refuse to ignore that because that makes non-autistic people unconfortable. &nbsp;I feel ike Jenna would have been ok if you called the autistic people in this video "people with autism" which... ugh, my autism is not an attachment or an accessory to who I am. &nbsp;I am tired of being told how to define myself.</p>

<p>Hi Amy,</p>
<p>I just wanted to say Thank You for giving words to the feelings many of us have. It is a universal message for our society as a whole to stop labeling and stigmatizing our children, and putting them in catagories that portray them as tragic and damaged. Instead we need to be embracing the unique talents and gifts of all our young people. We all have challenges as welll as strengths. I am the proud mother of two loving, compassionate and talented girls. They are both unique and have many gifts. They also happen to have Autism and Combined type ADHD. I have never wanted to "fix" either of my beautiful daughters. The "diagnosis" is just a way for us advocate for them and help us give them the tools they need to build confidence and succeed in their own goals and future dreams. That is the job of any parent, helping your kid learn and grow. Over the years many people who I believe actually do mean well, have approached me with some new treatment, diet, or book that could help me "fix" our daughter's "problem". Each time I have taken a deep breath and tried to remember that their misguided attempts "help" come from a place of caring, ignorant as they may seem. I then let them know that I appreciate their concern, but my child doesn't have an incurable disease of life threatening illness, and that fitting into the mold of what is so called "normal" just doesn't fit into our lives. I am very grateful and proud of who my girls are, and being their mother and seeing things from their perspective inspires me to be a better version of myself. By the way, I was recently diagnosed as being on the spectrum myself, I took it as a compliment.</p>
<p>Thanks again for representing the many of us who don't feel that autism is a tragedy, but rather the way the media often portrays us is.</p>