Thesis Proposal: Part XIII – Proposal 8

This proposal ended up being 19 pages single-spaced.  Still really long!  But, it was getting shorter.  I got it down 4 pages by cutting out just about everything from the rhetorical analysis on Wright’s piece except for a few things here and there.  In my original, I pretty much went line-by-line in Wright’s piece and analyzed it.  However, I cut out a lot of stuff, but I kept in the awesome sound-bite pieces that I wanted in there because they sounded cool!

I also cut out most of the narrative.  This is the narrative that is in my final thesis proposal (just reworded here and there so it fits)

My advisor ended it like he always ended our meetings, by saying, “Keep it simple.”


The subject of my thesis is how autism advocacy organizations use digital media to influence the representation, narrative, agency, and identity of autism, and consequently autistic people.

Looking at the discourse produced and circulated online by two autistic advocacy organizations, I investigate how both autism and the autistic are rhetorically constructed through digital media. Perhaps the most influential and well-known authority on autism, Autism Speaks–a community of parents and grandparents organized to find a cure to autism–has created an online presence that substantially impacts the way that the general public understands this neurological condition. Through a variety of awareness campaigns, Autism Speaks has discursively constructed autism as a menace to all who encounter it, causing a national crisis. Rather than enabling autistics to enrich their lives, the public is programmed to support Autism Speaks’ crusade to eliminate both autism and, by neurological association, the autistic. Despite this organization and its supporters’ good intentions, ultimately, Autism Speaks advocates only for improving the lives of the parents of autistics, not the autistics themselves.

There are, however, pockets of dissent and resistance to the frame of autism as a burden, a curse, or a scourge to be eradicated. Among its other activist campaigns in both virtual and real-world environments, the Autistic Self Advocacy Network (ASAN) has challenged Autism Speaks’ attempts to portray the autistic as either a menace or a burden to society (especially to their parents) by discursively reclaiming the identity of those defined as “actually autistic people.”

[Ack! I am activating the active actor’s attempt to actually actuate the activistic act of activism’s activity of acting.]

Drawing from disability studies and the rhetorical perspectives on semiotics, terministic screens, and the rhetoric of science, my culminating project is built to answer two primary questions. First, how does Autism Speaks establish itself as an authority qualified to tell the story of the autistic? Second, how have autistic self-advocacy groups such as ASAN used the Internet and digital media to both resist how Autism Speaks represents autistics as well as empower autistics to define their own identity.

Accordingly, in this proposal, I explain the initial motivation behind my research; analyze findings from a preliminary study of an op-ed piece on Autism Speaks website and the subsequent response to it; provide a rationale and overview of the full study; and describe the larger societal implications and significance of this project.

Rhetoric: The New Lens to See
Autism Speaks in a New Light

Last year, I began to work on my presentation for the Great Plains Alliance in Computers and Writing and I presented on autism and identity formation through the internet.  How is identity formed in autistic people?  For the fifth time in 7 years, I wondered if I had autism.  After typing in autism into Google, I clicked on the first search result: Autism Speaks.  

I had looked at their website in the past when situations came up that made me wonder if I was autistic. Every time, the message I read made me terrified about the possibility of being autistic.  However, now I was seeing this same website from the critical lens of rhetoric.  I saw what they were really doing and it terrified me again; not about being autistic, but about the image of autism they were really making the public aware of: autism as a monster, as a menace.  But another thing, more rhetorical, came to mind: they have no warrant for any of these claims.  Autism Speaks lacks the support to their assumptions.

Several months later, I read an article entitled “Autism and Rhetoric” by Paul Heilker and Melanie Yergeau and I saw autism in a whole new light.  Autism is rhetorical, disability though it may be, it is also a rhetoric, a way of being in the world through language.  They call upon rhetoricians to recognize that “every public discourse on autism is begging for rhetorical analysis.”  There is no more renowned a public discourse entity than Autism Speaks and so, I heeded their call and found a fascinating connection between Foucault and Autism Speaks.

Preliminary Study

Pre-preliminary Study

In a speech that Suzanne Wright gave in the Vatican on autism, Wright said that parents to the autistic child is very similar to Saint Francis of Assisi to a leper.  This immediately reminded me of how Michel Foucault begins his book “Madness and Civilization” by discussing how we leprosariums were nearly everywhere in the middle ages, but soon began to taper off once the cause of leprosy was discovered.  These leprosariums were left abandoned until a new type of leper came along: the mad people.

It is curious that Wright should bring up a leper when discussing autism because Foucault says that just as the lepers were marginalized from society in leprosariums, so too were “mad people.”  Mad people are defined as people who don’t fit into the norms that society have for how people should behave.  They are a type of capital-”O” Other.  The definition of the madness that Foucault gives fits quite perfectly with the symptoms of autism that the medical community has determined.

In other words, there is a fascinating connection between the autism that Wright is discussing (which is different from the autism that the medical community discusses, but more on that later) and Foucault’s work on the history of Madness and Civilization.

I recognized that not everything was as it seemed with Autism Speaks message. Therefore, I to looked at another article that Autism Speaks had endorsed and the first thing I found was an op-ed piece that drew a lot of anger from autistic self-advocates.

Autism Speaks

On November 11, 2013, Suzanne Wright, the co-founder of Autism Speaks, wrote an op-ed piece entitled “Autism Speaks to Washington – A Call for Action.”  It was written “On the eve of Autism Speaks’ first-ever national policy and action summit in Washington, D.C.” (Blurb).

Wright begins the article by writing “This is the week America will fully wake up to the autism crisis” (para. 1), and goes on to give two analogies. “If three million children in America one day went missing – what would we as a country do?  If three million children in America one morning fell gravely ill – what would we as a country do?” (para. 2-3).  Using these analogies implies that autistic people are missing and gravely ill.  Kidnapping, in particular, shows an image that autistic people are missing even if their body is right in front of you.  However, it could definitely be argued here that she was just giving an analogy and wasn’t attempting to equate autism with kidnapping and grave illness.  

However, her next point maintains the analogy further cementing how autism is a missing child, “We’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing” (para. 6).  In other words, this is not just an analogy, this is autism.  If three million children disappeared, we would have lost touch with them and Wright is saying that we have lost touch with autistic children.  Therefore, Wright is saying that the analogy is not just an analogy, kidnapping and grave illness is equivalent to autism.

Wright then begins to talk about how autism affects families: moms, dads, and care-takers barely sleep.  When they do sleep, it is with an ear waiting for their child to do something next like “escape, hurt themselves, strip off their clothes, climb the furniture, and raid the refrigerator” (para. 11).  She ends the paragraph with another representation of autism “Sometimes the silence is worse” (para. 11).  Autistic people are silent according to this article.

She continues with her story of the families by saying that families with children with autism “are not living” (para. 12).  It is wonderful to know that autism can make it so families are not living.  So, I wonder, are they zombies?

Wright continues, “they are existing. Breathing – yes. Eating – yes. Sleeping – maybe. Working – most definitely – 24/7” (para. 13).  Zombies don’t breathe or eat (unless you count brains).  As facetious as that may sound, the image that Wright weaves of autism is of a fate worse than being a zombie.  A fate where you’re conscious and existing, but are not living life because of your autistic child, a fate where you are suffering.  

She then begins a series of bolded sections that read “This is autism” (para. 14, 16, 25) where she gives an example of something families have to live with when they have an autistic child and then says “This is autism.” The first example she gives is that “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future” (para. 15).

The question is: is this autism or is this the definition of being a parent to something called a human being.  Most parent of human beings live moment-to-moment, anticipating their child’s next move because children are, well, children.  This means they will do stuff that no adult would ever do, because they are children.  

I have a hard time believing that every single family of an autistic child lives their life in a constant state of despair. And if they do, it is probably because of mental health problems in the parents, for which they should recognize it is within themselves and not caused by their child’s autism. Most human beings are also afraid of the future because we don’t know what it holds.  So, is this autism?  No!  This is what it means to be a parent of a human being.

The next few paragraphs actually do have something to do with autism,

Maybe they [the parents] 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.

This is autism. (para. 18-21)

Let’s go back to the question: is this being the parent of a child with autism or is this being the parent of a human being.  Seizures are a comorbidity of autism, NOT autism itself.  They can happen in autistic people, but they are a symptom of epilepsy, not autism.  

A child without autism may wet their bed until they are in the teens or beyond depending on things like how much they drank before going to bed or a traumatic experience they had.  Perhaps the third one doesn’t happen as specifically as biting themselves, but some teenagers without autism participate in self-injurious behaviors like cutting.  

So, is this what autism is?  No!  Not every autistic child will have these behaviors and these behaviors are not only found in autism.

The last four have nothing to do with autism:

Maybe they [the parents] 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. (para. 21-25)

These are not autism, these are all examples of how low socioeconomic status impacts families with autistic children.  However, Wright would argue with that by saying these families are at a low socioeconomic status because their children have autism.  Slowly, Wright is weaving the image of autism people think of when they hear the word.

After 26 paragraphs, Wright finally brings it to the autistic child.  “In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day” (para. 27).  Services they rely on every day is a fascinating choice of words because it implies that the autistic person cannot make it without them.  And again, it is filled with absolutes, that if a child does not rely on services every day, then they are not autistic.  That means that even though I have a diagnosis, I am not autistic because I don’t rely on services every day.  

She then goes right back to the parents and families of autistic people asking the following questions “And, what about their parents? How much can we ask them to handle? How long will it take before the exhaustion makes them ill? How long before they break?” (para. 28)  

Then, she paints the most vivid image of what three million people with autism would like like:

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help. (para. 40)

These are the images of autism that Autism Speaks has been weaving.  These are the same images that stopped me from seeking a diagnosis for 8 years because I can do these things (Some may be difficult for me, but in the end, I can do them).  However, the language Wright uses is absolute, autism affects every autistic person in this way.

To sum it up, this is the image of autism that this one article weaves:

  • Autism affects families with autistic people in them by
    • Causing families to split up
    • Causing families to go broke
    • Causing families to struggle through their days and years
    • Causing families to simply exist rather than live
    • Causing families to live in despair
    • Causing families to live in fear of the future
    • Causing families to be mentally, physically, and emotionally depleted because
      • Causing families to be up all night because their child had a seizure
      • Causing families have to change the sheets after a bedwetting accident
      • Causing families have to stop their child from biting them or themselves
    • Causing families to not be able to afford a trip to the autism specialist
    • Causing families to be on a waiting list for services
    • Causing families’ insurances to not pay
    • Causing families to not have enough money to pay for a lawyer to fight for school services.
  • Autism affects autistic people by preventing them from
    • Taking care of themselves
    • Dressing themselves
    • Eating independently
    • Use the toilet
    • Crossing the street
    • Judging danger
    • Judging temperature
    • Picking up the phone
    • Calling for help

Autism Speaks has effectively created a 21st century frankensteinian puzzle monster.  I say that because they are taking symptoms from the infinite spectrum that is autism and applying them to this term.  In other words, even if only one autistic person is unable to call for help, that symptom has been added to what autism is.

Autism Speaks thrives on the image created in paragraph 40–they raise about $70 million every year–and they’ve attempted and succeeded at cementing this into the public’s consciousness: autistic people cannot do anything, therefore, organizations like Autism Speaks must advocate for them.

John Elder Robison’s Response

Two days after the publication of Suzanne Wright’s article, John Elder Robison responded to Wright’s article and announced his resignation from Autism Speaks.  While he was not the first person to speak out against Autism Speaks, perhaps he made the most impact.

In order to understand why it made the most impact, one must understand one of the Autistic Community’s biggest criticisms of Autism Speaks: Autism Speaks lacks autistic people on their boards.  This was not always the case because John Elder Robison is autistic.  He was the person that Autism Speaks could point to if anyone brought this argument up.

In the next paragraph, he says

I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way. (para. 5)

This is a vastly different representation and narrative of autism.  It is crafting an image of autism as a gift that holds disability, but it also holds gift as well.  Vastly different to the image that autism is only a disability that drives parents and society to despair.  However, what’s confusing here is his analogy: autism is a gift, but it is also the fire that burns us.  When I think of fire, I think of how it destroys everything it touches.  So, autism is a gift, but it can also completely destroy you?  It is a tad confusing.

In the next paragraph, he gets a bit confusing.  So far in this article, autism is both a gift and a disability.  However, he then says,

If I act a bit different because I’m autistic, I think it’s my right to do so without being mocked, bullied, or discriminated against.  At the same time I realize people are people, and if I act like a jerk, I will be treated as one.  I understand I have a responsibility to learn how to behave in ways others will find acceptable or even appealing. (para. 8)

Difference is not okay because autistic people have a responsibility to act “in a way others will find acceptable or even appealing” (para. 8).  It contradicts his idea of “changing society to make it more accommodating for people who are different” (para. 7).  Why isn’t it society’s responsibility to learn how autistic people behave and be okay with it?  In other words, what role does society have in the narrative of the autistic?  Robison seems to be saying that autistic people must change, not society.  

While I understand that this may be a reality, that society will not change, that does not make it right.  70 years ago, society didn’t want to change their views on segregation, but they eventually did.  Just because society doesn’t want to change doesn’t make it right.

Robison continues his opposition of Wright’s image of autism when he says, “there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect” (para. 11).  Autistic people can choose to live their lives, not have their lives chosen for them by Autism Speaks and the parents that Autism Speaks advocate for.  

“We [autistic people] are not problems for our parents or society, or genes to be eliminated. We are people” (para. 15).  This is the point where Robison begins to explicitly point out and challenge the image of autism that Autism Speaks has weaved.

He goes on to point out and point out something that most in the mainstream public don’t know, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target” (para. 20).

Finally, he drives the largest nail in the coffin of the whole post when he says, “Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions.  The priority cannot be autism parents, or autism grandparents.  It’s got to be actual people with autism” (para. 21).  He explicitly points out who Autism Speaks really advocates and works for: the parents or grandparents of autistic children.

Robison, an autistic man who worked to change Autism Speaks from within, quit the organization and publicly posted his letter of resignation pointing out that Autism Speaks’ #1 priority is the parents or grandparents of autistic children, rather than autistic people.  This should have opened the doors wide open, but it didn’t.  Not many in mainstream society have heard about this.

My final thoughts on Robison post is that he challenges Autism Speaks’ narrative of the autistic person as useless and unable to care for themselves by 1) simply writing as an autistic person, and 2) logically taking Autism Speaks to task on their image of autism.  

Juxtapositional Rhetoric

A pattern emerges when looking at both of these articles.  They share the same core mentality of autism, but to differing degrees.  Wright looks at only the suffering and negatives of autism, while Robison contends that there are gifts of autism.  However, Robison maintains that parts of autism should be fixed.  He seems to be saying we should have a plan for how to fix the parts of autism that make people suffer, for instance: a national plan?

The core problem here is that they are both looking at the same object: the autism that was crafted by Autism Speaks.  Autism Speaks crafts this image of autism as capital “O” Other by influencing the representation and narrative surrounding autism.

Another thing that is very striking when you actually look at the two documents side-by-side is the choice that Wright makes by using very short paragraphs.  On average, her paragraphs are 20 words long.  There are only three instances where her paragraph is more than 55 words long:

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse. (para. 11)

So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country. Do we have a plan for them? Are they all getting the same medical care and therapies across the board? Are we doing anything to guarantee they get a fair shot at a productive future? (para. 31)

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help. (para. 40)

In all three of these instances, she is talking about how bad autism is.  The first is talking about how autism is bad for parents, the second is talking about how bad it is that we don’t have a national plan for the autism crisis, and the third is talking about how autism is bad for autistic people.

What is the purpose of writing like this? It could certainly be argued that this is just her writing style, however, if you look at any transcript of her speaking, she is very eloquent and goes into depth to support what she says.  This is not on showcase in this document.  Again, why is this?  Rhetorically speaking, this is a masterful rhetorical move because it is (1) simple to read and (2) simplifies a complex situation to under 20 words in a paragraph.

Robison’s average 55 word paragraphs are sharply juxtaposed with Wright’s 20 word paragraphs.  In his paragraphs, he goes into depth to support what he says, thus leading to logical appeals of what Autism Speaks is doing.

Insert the most amazing and awe-inspiring transition here that will leave the audience in ecstasy-like (also known as ecstatic) awe

Awareness Campaigns? I think Not: Exigency of this Topic


John Elder Robison discussed the video “I am Autism.”  It was a video that Autism Speaks published in 2010.  It was directed by Alfonso Cuarón.  This was developed as part of an autism awareness campaign.  Some of the things that they rose awareness about autism were the following:

  • Autism will make the parents’ marriage fail
  • Autism will bankrupt the parents
  • Autism is a stalker
  • Autism works faster than pediatric AIDS, cancer, and diabetes combined
    • Therefore, Autism is the same as AIDS, cancer, and diabetes

This is an awareness campaign that raises awareness of the image of autism that Autism Speaks has been weaving for the last 10 years.  Autism is a burden and a monster.  But what about autistic people?  Are autistic people also burdens and monsters?  Well, Autism Speaks can’t go around claiming that because parents and society would realize what they are really doing.

We know that they seek to eradicate autism, but how do they do that when the autism is an inherent part of the autistic person’s identity?  Well, this is where their rhetoric is kicked up another notch.  They maintain person-first language (e.g., person with autism) in every one of their documents and correspondences.  This even includes correspondences with autistic people who ask to be called autistic people (Yergeau, clinically significant disturbance).

Person-first language is a linguistic and rhetorical attempt to show society that autism and the person are two separate things.  Therefore, when we eradicate autism, we don’t eradicate the person.  It is no different than the Native American boarding schools’ whose primary goal was to “kill the Indian, save the person.”  But, in this case, it is, “Kill the autism, save the person.”

But, autism is the neurological lens through which autistic people see and interact with the world.  You can no more separate an autistic from their autism than you could a person from their skin color (ASAN self-advocacy guide).  Not only that, but there is no organization out there that seeks to eradicate blackness by funding research into the genetic predispositions of and cure for blackness.  But this is what Autism Speaks is doing.  That is the exigency: lives and identities are at stake here.

Awareness Months

Another rhetorical move that Autism Speaks uses is their use of the term “Awareness.”  Many in the autistic community demand that we move beyond awareness to acceptance.  After hearing this, I wondered why and just happened to glance at the calendar.  

At the bottom, it said, “Breast Cancer Awareness Month.”  I grabbed the calendar and rifled through it and saw the following other awareness months: Domestic Abuse Awareness Month, Sexual Assault Awareness Month, Sudden Infant Death Syndrome Awareness Month, Heart Attack Awareness Month and many more.  Awareness months are all associated with either (1) death or (2) abuse.  In other words, Awareness Months are associated with things that we want to get rid of or prevent.  There are very few people out there who would think that we shouldn’t prevent death, abuse, and cancer whenever possible.

Then, I got to April and it read, “Autism Awareness Month.”  Curious, I did a websearch and came up with hundreds of awareness month names.  Nearly all of them were associated the criteria for Awareness Months.  But autism was also thrown into the mix.  Is autism associated with death or abuse? Nope!

However, this is where it is helps to look back at Wright’s article specifically the beginning and paragraph 40.  If you cannot take care of yourself, if you have been kidnapped, or if you have a grave illness, now autism fits within the criteria for Awareness Months.  Grave illness results in death, not being able to take care of yourself leaves you susceptible to abuse.  Now that Wright has created an image of autism that fits the criteria, autism awareness month fits with the others.

However, Robison and autistic self-advocates do their damndest to challenge this image.  Autism is a gift and who would want to prevent a gift?  A gift does not fit within the criteria for Awareness Months.  Clearly, autism awareness is not what we should be after; it is autism acceptance that we should really be after.  Autistic self-advocates have recognized this and groups like ASAN actively create Autism Acceptance campaigns to explicitly challenge Autism Awareness campaigns.

Awareness campaigns, as Autism Speaks uses it, become propaganda to advance the image of autism that the world will think of when they hear the word.

Further Expansion

Now that I have rhetorically analyzed two artifacts, I realize that there is much more to be done.  I plan on developing a theoretical framework in order to analyze the portrayal of autism using the rhetorical terms “representation, narrative, identity/image, and agency.”  I will apply them to several tool kits, curriculums, awareness campaigns, and acceptance campaigns published by Autism Speaks and the Autistic Self-Advocacy Network (ASAN).  

ASAN is an autism advocacy group that is run by and for autistic people.  Their mission is to assist society in changing their views and expectations thereby allowing autistic people to live in the way that is most natural.

Using these artifacts, I will also use Michel Foucault’s concepts of archaeology and genealogy to trace both of these organizations back to their ideological genesis using Bruno Latour’s concept of the Black Box and Kenneth Burke’s Terministic Screens.

Another thing that I would also like to expand on is to look at how the internet plays a key role in the process of representing and narrating the story of autism thereby creating the image.  I don’t actually know how I will do this yet because I haven’t done it yet, but I am sure there are some great theoretical frameworks that I will be able to use once I have discovered them.

Plans for Taking over the World one Ableistic Organization at a Time

At this time, I am anticipating my full study to consist of … chapters (with an additional appendix).  Below, I outline and describe the components of my thesis as I currently envision them. I also include a generalized timeline of when I expect these chapters to be completed next semester.

  1. Introduction
    1. Outline my main argument
    2. Establish the exigency of my subject
    3. Provide a forecast statement for the overall thesis
  2. Rhetorical Analysis of several Autism Speaks documents looking at
    1. how they represent autism
    2. how they narrate autism
    3. how their narration and representation of autism impact the image, or identity, of autism
    4. how all of this impacts the agency allowed to autistic people
  3. Genesis Ideology of Autism $peaks
    1. Input (blackbox) Output
      1. Different way of using language to empathize with the world (statistical normality) Difference [with a capital “D”]
      2. Difference (science) abnormality
      3. abnormality (science) disability
      4. disability (ableism) Other
      5. Other (science) Autism
      6. Autism (Ableistic science) Theory of Mind
      7. Theory of Mind (advocacy) Autism Speaks
      8. Autism Speaks (Ableistic advocacy) “Advocacy”
  4. Counter-example: Rhetorical analysis of Autistic Self-Advocacy Network documents looking at:
    1. how they represent autism
    2. how they narrate autism
    3. how their narration and representation of autism impact the image, or identity, of autism
    4. how all of this impacts the agency allowed to autistic people
  5. Genesis Ideology of the Autistic Self-Advocacy Network
    1. Input (blackbox) Output
      1. Different way of using language to empathize with the world (statistical normality) Difference [with a capital “D”]
      2. Difference (science) abnormality
      3. abnormality (science) disability
      4. disability (science) Autism
      5. Autism (advocacy) Autistic Self-Advocacy Network
      6. Autistic Self-Advocacy Network (advocacy) Advocacy
  6. Conclusion
    1. Cement the connections between subject positioning, rhetorical maneuvers, and writing as social action within advocacy
    2. Synthesize why I believe these connections are useful and relevant to the way we approach public discourse surrounding autism


Projected Timeline

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I am autism.

I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.

I know where you live.

And guess what? I live there too.

I hover around all of you.

I know no color barrier, no religion, no morality, no currency.

I speak your language fluently.

And with every voice I take away, I acquire yet another language.

I work very quickly.

I work faster than pediatric aids, cancer, and diabetes combined

And if you’re happily married, I will make sure that your marriage fails.

Your money will fall into my hands, and I will bankrupt you for my own self-gain.

I don’t sleep, so I make sure you don’t either.

I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.

You have no cure for me.

Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.

I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.

I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?

And the truth is, I am still winning, and you are scared. And you should be.

I am autism. You ignored me. That was a mistake.

And to autism I say:

I am a father, a mother, a grandparent, a brother, a sister.

We will spend every waking hour trying to weaken you.

We don’t need sleep because we will not rest until you do.

Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.

I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.

Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.

We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.

We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.

We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.

Our capacity to love is greater than your capacity to overwhelm.

Autism is naïve. You are alone. We are a community of warriors. We have a voice.

You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.

You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?

You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.

Autism, if you are not scared, you should be.

When you came for my child, you forgot: you came for me.

Autism, are you listening?


I… Am… Autism… Speaks…

I am Autism Speaks…

I am invisible to your children. And I will be invisible to you until it’s too late.

I know where you live. And guess what? It’s no use hiding.

I have my eyes on all of you… I am watching you all.

I am Autism speaks.

I have no color… no religion… no morals… no love….

I speak the language of despair and disease. And with every voice I steal. I grow stronger.

I work quickly to make people believe your children are suffering worse than cancer or Aids victims.

I am Autism Speaks.

And if you’re happily married… I’ll distroy your marriage with unattainable dreams and broken promises.

Your money will fall into my hands… And I will bankrupt you… And pay myself hundreds of thousands of dollars a year.

I don’t sleep… And I’ll make sure you don’t either.

I will make it virtually impossible for you to leave your home without feeling the shame of diseased children.

I am Autism Speaks.

You have no defence against me…

Your advocates don’t have the money to fight me. And I relish your poverty.

I will make everyone think you and your children are diseased and disordered. And then… Turn on them.

I am Autism Speaks.

I have no interest in right or wrong.

I derive great pleasure out of your loneliness.

I will take away your hope.

I will rob you of your children and of your dreams.

I will make sure you will cry everyday.

You will wonder who will look after your children when you die.

And the Truth is… I… Do… Not… Care…

I am Autism Speaks.

And you are scared…

And you should be.

I am Autism Speaks.

You ignored me… A!!nd that was a Big mistake.

I am Autism Speaks…

And I speak in voices stolen from your children.

I am Autism Speaks.


Notes to self: How do I incorporate the internet piece?  Probably in the how to expand section.


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