History of Science 170 Blog Post #7
Confronting the Controversy: Giving Voice to People with Severe Autism and Other Developmental Disabilities
By Nathan Grant
In my History of Science class, we watched the controversial “I Am Autism” commercial produced by the nonprofit organization Autism Speaks. This video was released in September 2009 for the annual World Focus on Autism event and received a lot of criticism from autistic self-advocates.
The “I Am Autism” video consists of clips of autistic children, accompanied by an ominous voice-over that personifies autism as a dangerous force that harms families. In this video, Autism Speaks gives autism its own voice that threatens families by saying:
Confronting the Controversy: Giving Voice to People with Severe Autism and Other Developmental Disabilities
By Nathan Grant
In my History of Science class, we watched the controversial “I Am Autism” commercial produced by the nonprofit organization Autism Speaks. This video was released in September 2009 for the annual World Focus on Autism event and received a lot of criticism from autistic self-advocates.
The “I Am Autism” video consists of clips of autistic children, accompanied by an ominous voice-over that personifies autism as a dangerous force that harms families. In this video, Autism Speaks gives autism its own voice that threatens families by saying:
“I know where you live. I work very quickly. 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 that you don’t either. I will make it virtually impossible for your family to easily attend a temple, birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. 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.”
After portraying autism, the video shifts to clips of families who join their children hand-in-hand and call for more resources for support. Parents, siblings, and caregivers explain, “We are a community of warriors. We have a voice. Autism, are you listening?”
This video has received a lot of criticism for its negative, derogatory portrayal of autism. From the deep, ominous voiceover, we are immediately led to believe that autism is a vicious disability that destroys families. Advocates around the world criticized the video for depicting autism as a burden and object of fear, instead of a spectrum of differing ability. Just from the top three comments on the video, we can see that people believe the video's portrayal of autism is false and that it “really was as bad as everyone said it was.”
After watching the video, everyone in my class was also shocked and disgusted. Like the majority of advocates, the students in my class criticized Autism Speaks for its negative portrayal of autism.
I agree that the tone Autism Speaks used to personify autism was harsh and disparaging to people on the spectrum, but I believe it is important to share that my family can fully relate to the video’s message. In addition to having MPS II, my twin brother also has severe autism. He is nonverbal and has a significant intellectual disability. He needs 24/7 assistance with daily living activities. However, my brother is often physically aggressive toward others which makes it difficult to provide care for him. He often tries to bite us and pull our hair. There have been many scratches, bruises, and torn clothes. There have also been many sleepless nights. We cannot go out in public without worrying that my brother will get upset. When we can go to restaurants with my brother, we always have to hurry to order and eat our food out of fear that my brother will lose his patience. It is a struggle, it is embarrassing, and it is painful to go out in public with my brother. And my parents do worry tremendously about who will take care of my brother as they age. Like the video says, we are scared. We need more community resources for people with severe autism and other developmental disabilities. We need more services and treatments for people who are aggressive. We need more support for caregivers who are struggling.
I want to clarify that my brother does not purposefully intend to inconvenience or harm others, like the video would make one believe. However, the outcomes of his behavior can be challenging.
Not all people on the spectrum and not all families experience these challenges, but my family does. While the tone in the “I Am Autism” video should have been different, I am grateful there is a video that raises awareness of the challenges my family experiences.
While I was initially hesitant to share this message in class, I am glad I did because I wanted my class to hear the other side of the story. Yes, the way Autism Speaks gave autism a voice to threaten families was inappropriate. But, what led people to create this video? There must be families who are struggling with the emotions expressed in the video. Advocates who criticize the way autism is portrayed in the video miss the message that there are families who are struggling and need our help.
In the past 30 years, more autistic individuals who are verbal have increasingly advocated against resources like “I Am Autism” and Autism Speaks. As writer Alisa Opar explains in an article about the neurodiversity movement, many self-advocates claim that resources like “I Am Autism” negatively “paint autistic people as burdens, as toxic and catastrophes” (Opar 2019). Accordingly, self-advocates have increasingly urged for resources to portray autism as a difference, rather than a disease or disability that “reflects back society’s intolerance of difference” (Opar 2019). However, by blocking many resources from portraying autism as a severe disability, self-advocates can prevent many families from receiving the support they need. Whereas many self-advocates see autism as a part of their identity and would never change it, there are many families who desperately need treatments and cures.
It seems that much of the debate comes from tensions between those living with high-functioning and low-functioning autism. Autism exists on a spectrum, and approximately 30 percent of those on the spectrum have severe autism and require significant support (Opar 2019). Accordingly, many self-advocates who can speak do not have the same needs as those who are nonverbal, aggressive, and severely intellectually disabled. While self-advocates can speak for themselves to support their needs, who is speaking for those like my brother who are severely disabled?
As the saying goes, when you meet one person with autism, you have met one person with autism. I believe some tensions may be alleviated if more advocacy groups specify what type of autism their stories, resources, and services refer to. Given the diverse needs of people on the spectrum, it may be helpful for organizations and advocacy groups to specify between mild vs. severe (or low- vs. high-functioning) autism. This specification may help society better understand that autism exists on a spectrum and may help deliver appropriate services to those who need them.
Whatever we do moving forward, we must be respectful in our portrayal of autism, but we must not silence peoples’ stories.
This video has received a lot of criticism for its negative, derogatory portrayal of autism. From the deep, ominous voiceover, we are immediately led to believe that autism is a vicious disability that destroys families. Advocates around the world criticized the video for depicting autism as a burden and object of fear, instead of a spectrum of differing ability. Just from the top three comments on the video, we can see that people believe the video's portrayal of autism is false and that it “really was as bad as everyone said it was.”
After watching the video, everyone in my class was also shocked and disgusted. Like the majority of advocates, the students in my class criticized Autism Speaks for its negative portrayal of autism.
I agree that the tone Autism Speaks used to personify autism was harsh and disparaging to people on the spectrum, but I believe it is important to share that my family can fully relate to the video’s message. In addition to having MPS II, my twin brother also has severe autism. He is nonverbal and has a significant intellectual disability. He needs 24/7 assistance with daily living activities. However, my brother is often physically aggressive toward others which makes it difficult to provide care for him. He often tries to bite us and pull our hair. There have been many scratches, bruises, and torn clothes. There have also been many sleepless nights. We cannot go out in public without worrying that my brother will get upset. When we can go to restaurants with my brother, we always have to hurry to order and eat our food out of fear that my brother will lose his patience. It is a struggle, it is embarrassing, and it is painful to go out in public with my brother. And my parents do worry tremendously about who will take care of my brother as they age. Like the video says, we are scared. We need more community resources for people with severe autism and other developmental disabilities. We need more services and treatments for people who are aggressive. We need more support for caregivers who are struggling.
I want to clarify that my brother does not purposefully intend to inconvenience or harm others, like the video would make one believe. However, the outcomes of his behavior can be challenging.
Not all people on the spectrum and not all families experience these challenges, but my family does. While the tone in the “I Am Autism” video should have been different, I am grateful there is a video that raises awareness of the challenges my family experiences.
While I was initially hesitant to share this message in class, I am glad I did because I wanted my class to hear the other side of the story. Yes, the way Autism Speaks gave autism a voice to threaten families was inappropriate. But, what led people to create this video? There must be families who are struggling with the emotions expressed in the video. Advocates who criticize the way autism is portrayed in the video miss the message that there are families who are struggling and need our help.
In the past 30 years, more autistic individuals who are verbal have increasingly advocated against resources like “I Am Autism” and Autism Speaks. As writer Alisa Opar explains in an article about the neurodiversity movement, many self-advocates claim that resources like “I Am Autism” negatively “paint autistic people as burdens, as toxic and catastrophes” (Opar 2019). Accordingly, self-advocates have increasingly urged for resources to portray autism as a difference, rather than a disease or disability that “reflects back society’s intolerance of difference” (Opar 2019). However, by blocking many resources from portraying autism as a severe disability, self-advocates can prevent many families from receiving the support they need. Whereas many self-advocates see autism as a part of their identity and would never change it, there are many families who desperately need treatments and cures.
It seems that much of the debate comes from tensions between those living with high-functioning and low-functioning autism. Autism exists on a spectrum, and approximately 30 percent of those on the spectrum have severe autism and require significant support (Opar 2019). Accordingly, many self-advocates who can speak do not have the same needs as those who are nonverbal, aggressive, and severely intellectually disabled. While self-advocates can speak for themselves to support their needs, who is speaking for those like my brother who are severely disabled?
As the saying goes, when you meet one person with autism, you have met one person with autism. I believe some tensions may be alleviated if more advocacy groups specify what type of autism their stories, resources, and services refer to. Given the diverse needs of people on the spectrum, it may be helpful for organizations and advocacy groups to specify between mild vs. severe (or low- vs. high-functioning) autism. This specification may help society better understand that autism exists on a spectrum and may help deliver appropriate services to those who need them.
Whatever we do moving forward, we must be respectful in our portrayal of autism, but we must not silence peoples’ stories.
References
Opar, Alisa. “In search of truce in the autism wars.” Spectrum (2019). https://www.spectrumnews.org/features/deep-dive/search-truce-autism-wars/.
“I Am Autism commercial by Autism Speaks.” Video. https://youtu.be/9UgLnWJFGHQ.
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Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with complex health conditions and developmental disabilities. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
Opar, Alisa. “In search of truce in the autism wars.” Spectrum (2019). https://www.spectrumnews.org/features/deep-dive/search-truce-autism-wars/.
“I Am Autism commercial by Autism Speaks.” Video. https://youtu.be/9UgLnWJFGHQ.
Click here to return back to the History of Science 170 Blog home page
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with complex health conditions and developmental disabilities. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.