The Autism Narrative
- “We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning…Autism.”
- “We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It’s up to you now…Asperger’s Syndrome.”
These are excerpts from a real ad campaign that ran back in 2007. The ransom note campaign spread inaccurate myths and misunderstandings about autism and was intensely negative, to the point of furthering the stigma of an autism diagnosis. Though the campaign may be over, the negative narrative surrounding autism that it represents continues to flourish.
The stigma from this negative narrative is a very real problem which affects many people. According to the CDC, 1 in 68 children are diagnosed with autism spectrum disorders (and may, in fact, have reached 1 in 50), which means that currently over a million autistic people in the United States alone are being exposed to this same narrative every day; a narrative which is argued as both strengthening and representing the stigma associated with autism.
Some may disagree that this narrative is harmful, arguing the narrative associated with autism the disorder is separate from the narrative associated with the autistic person. In reality, it's not so easy to separate the individual from the disorder. That's because autistic individuals grow up autistic and generally remain on the spectrum their whole lives, which would lead many to see it simply as part of who they are. Even when subjected to intensive therapy starting when they're young, which is currently the most science can offer, the therapy may combat or train away some symptoms of autism or teach a person to blend into society without seeming more than a little "weird", but the autism still remains. My point is that in the case of individuals with autism, you can't separate the individual with autism from the disorder so easily, and attacking the disorder can be, for many, the same as attacking the person.
With that established, let's move on the ways the narrative can be seen in our media and society at large. We'll discuss this in five sections - Negative Portrayal in the Media, Good Intentions, Autism Awareness Campaigns, Don't Mourn for Us, and finally, How to Help.
Negative Portrayal in the Media
When I got older, I thought to ask my sister what it was like to be autistic, and how the stigma of autism had affected her. She told me about her experience after my parents divorced, when she Googled autism and divorce, fearing - like many children whose parents divorce - that she had been the cause. In her search, she stumbled upon a video. I would describe it, but I don't think mere words could capture it; watch the video for yourself below (although if you are deaf, hard of hearing, or use a screen reader you can read the transcript here).
That's right - my sister found in this video the confirmation of her worst fears, and more. Not only had the video confirmed her thoughts that she'd caused the divorce, but it also told her that she was an embarrassment to our parents, was taking away our parent's hopes and dreams, and was going to bankrupt our family. That's a lot of blame for one person to bear, yet alone a child. When I watched the video, I just sat there, dumbfounded at the degree of demonization I had just witnessed. When my sister saw it, she sobbed for hours.
Thankfully, some people are standing up to try and change this narrative. The outcry caused by the release of this advertisement was so large that Autism Speaks was forced to remove it and apologize.
Thankfully, some people are standing up to try and change this narrative. The outcry caused by the release of this advertisement was so large that Autism Speaks was forced to remove it and apologize.
Good Intentions
Even well-meaninged people can feed into this negative narrative. Watching this video below, you can see that everyone involved has great intentions, but it comes across as very condescending. The older boy is held up as a kind of hero for being a friend to someone autistic, featured and praised on national television for having been kind enough to befriend the younger boy. In fact, the older boy's act of kindness is seen as so great as to bring many people to tears. I have several problems with this, but first I'll let you watch the video and judge for yourself.
Now that you've seen it, I'll start my critique:
First, I would say that an act of acceptance and friendship, while far too rare for autistic people, isn't something that should be on national television held up as being heroic. They're friends and that's that. Instead, the segment focuses on how different the autistic boy is and how lucky he is to find someone willing to be his friend. The song even says that him having a friend is a miracle, because apparently that's what it would take for someone to like someone like him.
My second problem I will frame with a question. Do they sound like friends? Because to me this is painted more as a popular kid taking pity on a person with disabilities, who is supposed to be grateful for him being nice and treating him well.
Finally, the way the boy with Asperger's is treated is really bad. When the hosts talk to him, they're condescending. Even though he's in high school, they talk to him as though he's an elementary schooler. It's not just the hosts that weren't appropriate; the segment as a whole portrays the boy as the subject of pity. For all these reasons, I would argue that this video, no matter how well-meaninged, feeds into the negative autism narrative.
My point here is that even those with the best intentions can accidentally strengthen the negative autism narrative. Awareness of how our own actions may feed into this negative narrative can help combat this problem.
First, I would say that an act of acceptance and friendship, while far too rare for autistic people, isn't something that should be on national television held up as being heroic. They're friends and that's that. Instead, the segment focuses on how different the autistic boy is and how lucky he is to find someone willing to be his friend. The song even says that him having a friend is a miracle, because apparently that's what it would take for someone to like someone like him.
My second problem I will frame with a question. Do they sound like friends? Because to me this is painted more as a popular kid taking pity on a person with disabilities, who is supposed to be grateful for him being nice and treating him well.
Finally, the way the boy with Asperger's is treated is really bad. When the hosts talk to him, they're condescending. Even though he's in high school, they talk to him as though he's an elementary schooler. It's not just the hosts that weren't appropriate; the segment as a whole portrays the boy as the subject of pity. For all these reasons, I would argue that this video, no matter how well-meaninged, feeds into the negative autism narrative.
My point here is that even those with the best intentions can accidentally strengthen the negative autism narrative. Awareness of how our own actions may feed into this negative narrative can help combat this problem.
Autism Awareness Campaigns
This - again well intended - narrative is also visible on Facebook. Many who care about people with autism like and share banners on their Facebook pages such as these:
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These may seem perfectly good and supportive, until you realize the messages they're conveying. Some autistic people have objected to the puzzle piece logo of autism awareness, saying that they are people, not puzzles, and all their pieces fit quite well together already.
That explains the first photo, but what about the second? Support autism awareness seems pretty non-controversial. However, that's not what the post is spreading. In reality, there's no autism education going on when people look at this photo. They know the word autism already - you'd be hard pressed to find someone who hasn't at least heard of it. What many people may still be lacking is understanding about what autism entails, so information as to that would actually be productive, but all this post includes is the word autism and a request to spread awareness (although it gives no cues as to how).
So what goal is the picture achieving if it's not actually spreading autism awareness? The intention behind it is normally a way of saying that the poster loves someone with autism, which is great. However, the side effect is that the mere fact that this 'autism awareness' is being spread says that autism is something bad.
You don't see things on Facebook spreading gifted awareness or awareness of other positive subjects; you only spread awareness of something bad, like the signs of a stroke or cancer. Remembering that the line between the autistic person and the autism itself can be blurry, as well as the fact that the stigma of autism, which negative messages feeds, can most definitely hurt people on the spectrum, this can make for a really bad situation, the possibility of which the poster never foresaw or intended.
In short, while both posts are well meaninged, they can inadvertently send out negative messages about people with autism, while still not making others any more aware of what autism entails than they were before. To see another perspective of how some people with autism/parents of children with autism look at autism awareness, click here.
What, then, should you post instead to send a more positive and productive message? Try posting something like one of these:
That explains the first photo, but what about the second? Support autism awareness seems pretty non-controversial. However, that's not what the post is spreading. In reality, there's no autism education going on when people look at this photo. They know the word autism already - you'd be hard pressed to find someone who hasn't at least heard of it. What many people may still be lacking is understanding about what autism entails, so information as to that would actually be productive, but all this post includes is the word autism and a request to spread awareness (although it gives no cues as to how).
So what goal is the picture achieving if it's not actually spreading autism awareness? The intention behind it is normally a way of saying that the poster loves someone with autism, which is great. However, the side effect is that the mere fact that this 'autism awareness' is being spread says that autism is something bad.
You don't see things on Facebook spreading gifted awareness or awareness of other positive subjects; you only spread awareness of something bad, like the signs of a stroke or cancer. Remembering that the line between the autistic person and the autism itself can be blurry, as well as the fact that the stigma of autism, which negative messages feeds, can most definitely hurt people on the spectrum, this can make for a really bad situation, the possibility of which the poster never foresaw or intended.
In short, while both posts are well meaninged, they can inadvertently send out negative messages about people with autism, while still not making others any more aware of what autism entails than they were before. To see another perspective of how some people with autism/parents of children with autism look at autism awareness, click here.
What, then, should you post instead to send a more positive and productive message? Try posting something like one of these:
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You'll notice the contrast between these pictures and the previous ones. This first new picture educates the viewer in several ways, first teaching them that autism is not a disease, and then further giving them a common saying (my mother's heard that far too many times) to let the viewer know it is inappropriate, and finally saying knowledge is the cure for ignorance. The picture also gives a solution to the disease of ignorance, namely actually getting to know someone on the spectrum.
The second picture educates viewers on how every autistic person is different. Both contribute unequivocally positive effects for the autism community, as the poster intended all along.
The second picture educates viewers on how every autistic person is different. Both contribute unequivocally positive effects for the autism community, as the poster intended all along.
Don't Mourn for Us
This negative autism narrative isn't confined to the media or Facebook - it also can be promoted from a medical perspective. For example, my sister was horrified to discover that when she was first diagnosed a psychiatrist told our mother to 'mourn' for the child she thought she had before finding out my was autistic.
The grieving process is still discussed, but while parents are welcome to feel however they wish, I would argue that parents should not be told they have to mourn. Telling parents to mourn means that from the very minute that your child is diagnosed they are being framed as lesser to a hypothetical child who could have existed (the reason for my sister's horror), regardless of the parent's own feelings on the subject. An autism diagnosis is not a death of the child you thought you had; it's a name for the way that your child is, whether you knew it or not.
For more on the perspective of the autism community on this subject, read Don't Mourn for Us, by Jim Sinclair. Here's a brief preview: "You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."
The grieving process is still discussed, but while parents are welcome to feel however they wish, I would argue that parents should not be told they have to mourn. Telling parents to mourn means that from the very minute that your child is diagnosed they are being framed as lesser to a hypothetical child who could have existed (the reason for my sister's horror), regardless of the parent's own feelings on the subject. An autism diagnosis is not a death of the child you thought you had; it's a name for the way that your child is, whether you knew it or not.
For more on the perspective of the autism community on this subject, read Don't Mourn for Us, by Jim Sinclair. Here's a brief preview: "You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."
How to Help
Remember that ransom note campaign I posted at the beginning of this article? People protested the campaign so fervently that not only was the group forced to cancel the campaign and apologize, but it also sparked a national dialogue on the stigma surrounding autism. It's a perfect example of the change that speaking up for people on the spectrum can lead to. But as we've seen in this article, the negative autism narrative isn't just confined to one campaign - it's everywhere. And we'll need every person's help to fight it.
So what can you do to change this narrative? Just by being aware of the negative narrative surrounding autism, you've already taken the first step. The second is making changes in ourselves, such as changing what posts we put on Facebook and changing the way we treat people with on the spectrum. And the third is promoting understanding in others, whether it is speaking up when you hear someone say something negative or ignorant about people with autism, or protesting an advertisement that portrays people with autism in a negative light. Working together, and taking these small steps, we can combat ignorance and promote understanding of individuals with autism.
So what can you do to change this narrative? Just by being aware of the negative narrative surrounding autism, you've already taken the first step. The second is making changes in ourselves, such as changing what posts we put on Facebook and changing the way we treat people with on the spectrum. And the third is promoting understanding in others, whether it is speaking up when you hear someone say something negative or ignorant about people with autism, or protesting an advertisement that portrays people with autism in a negative light. Working together, and taking these small steps, we can combat ignorance and promote understanding of individuals with autism.
