Research Paper

Autism_Awareness_RibbonAnalyzing Autism Awareness

S. Ferguson

University of California, Davis

Introduction

Disabilities are widely misunderstood by society, and the media tends to strengthen these misunderstandings. It becomes ironic when the media coverage that negatively portrays disability is issued by the organizations that set out to bring awareness and research to specific disabilities; however, that is very common. Even though organizations may have the best interest of individuals who are affected by certain disabilities at heart, the non-disabled people, who often make up a large part of the organization, may only see the difficulties of the disability and pity the condition, rather than remember the humanity of the individuals. Autism charities are no exception to this quandary in the realm of disability charities. Autism awareness has become more widespread, even as the voices of ASD individuals are more frequently heard. Many autism charities need to be reminded that autism does not have to be seen as a tragedy, which it does not have to be with proper treatment and accommodations. Autism charities can only be effective if their main focus is on helping ASD individuals and their families, and not spreading the stigma of the diagnosis.

How does society view disability?

Society has been taught that disability is a “bad thing”, and if a person lives with a disability, he or she is exceptional (Young 2014). This is portrayed with images of people with disabilities doing things that would otherwise be not particularly exceptional if the person was not disabled, such as performing common physical activities or attending school, with captions that say things like, “What is your excuse?” (Young 2014). The goal of these images is to inspire non-disabled people by comparing their achievements to those of disabled people. Treating people with disabilities in this manner is called “inspiration porn” because non-disabled people are treating disabled people as objects of inspiration for their benefit (Young 2014). It is reminding non-disabled people that their lives aren’t that bad because others, such as those with disabilities, have it worse, and that the non-disabled people should be grateful. Disabled people do not live to inspire non-disabled people, and it is damaging to disabled individuals to expect so little of them. People with disabilities live their lives, and live the best they can with the conditions they have, just like anyone else. Disabled people are given extremely low expectations where doing normal, everyday things is seen as exceptional and inspirational, such as being “congratulated for getting out of bed and remembering our own names in the morning” (Young 2014). It is patronizing to be celebrated for doing normal activities.

Non-disabled people and disabled people do not always agree with what is a positive or negative message when it comes to disability (Waltz 2012, p. 222). One example is how non-disabled people view motivational images featuring disabled people as inspirational and disabled people see them as treating their condition as pitiful. In regards to invisible disabilities, such as high-functioning autism, it is seen as a compliment by non-disabled people to say that such people do not appear to have a disability. To a person with an invisible disability, it may be a backhanded compliment because such comments are ignoring the issues that those individuals experience, and it is insulting to act like it’s a good thing that they don’t seem to have a disability because that is saying that having a disability is a bad thing.

Many charities for people with disabilities prescribe to the idea that disability is a negative force in the world, and portray the idea that lack of disability, or making disabled people appear less disabled, is a positive and worthy goal.

Negative Examples

Autism charities should not treat the diagnosis of a disability as a tragedy or something that needs to be eradicated, which they often do in their advertisements and mission statement. For example, in 2007, NYU Child Study Center conducted an awareness campaign for different disabilities that they study by using a ‘ransom note’ format. The ransom note was used to illustrate the ‘problems’ of each disability. “12 million kids are held hostage by a psychiatric disorder,” one billboard reads. This makes mental disorders seem like merely a negative force that affects the child rather than a condition that is part of the child. For autism, the flyer read, “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.” Next to the NYU Child Study Center logo at the bottom of the flyer says the tagline, “Don’t let a psychiatric disorder take your child”, while also stating that their goal is to also “prevent, identify, and treat” the disorders. This campaign uses fear tactics that result in pity and stigma towards ASD and other disabilities. By highlighting the struggles as kidnapping the child’s chance at ‘normalcy’, it is not looking at the reality of the disorder in regards to the individuals with the diagnosis and their families. For many, autism isn’t tragedy, but an identity and diagnosis that brings some hardships, as well as different ability, especially when provided with proper accommodations and services.

One of the largest autism organizations is Autism Speaks, and it is the most controversial. According to its website,

Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

The autistic community has a difficult time believing that Autism Speaks has the needs of autistic people as a priority.

The research funded by Autism Speaks is varied, with studies covering such topics as finding connections, to earlier interventions. According to the Autism Self-Advocacy Network (ASAN), “Autism Speaks spent just 4% of its budget on services for autistic people” in 2010 (Psychology Today 2013). This is an insufficient amount to go towards directly helping ASD individuals, especially from an organization that claims to advocate for autistic people. Suzanne Wright, co-founder of Autism Speaks, has been quoted as saying that she “anticipated a future in which autism is ‘a word for the history books’ ” (Psychology Today 2013). Wright’s quote demonstrates Autism Speaks’ emphasis on finding a cure for autism, rather than helping ASD individuals, which implies that autistic lives are lesser and in need of fixing, adding to the stigma of the disability. Autism Speaks has put an emphasis on research for prenatal testing for autism, which would allow for parents to be encouraged to abort their autistic child and have less autistic people in the world (Psychology Today 2013). This follows eugenics-based thinking that autism needs to be eliminated from the human gene pool by preventing autistic people from existing.

Autism Speaks’ most controversial video, “I Am Autism”, which has since been taken off of its website, personifies autism as a speaking entity, describing its infliction and cruel plans: “I work faster than pediatric aids, cancer, and diabetes combined… And if you’re happily married, I will make sure that your marriage fails” (ASAN). The end of the video uses the voices of family members who challenge autism and express hope in the fight against autism. The video received backlash from many autistic individuals, including ASAN, for portraying autism as a burden and pitiful (TIME 2009). Autism is not a cruel and calculating entity, but a difference in mental development. The video makes it seem that all families with an autistic child suffer, and does not show the positive outcomes of having a child with a disability. Any disability will bring hardships, but treating the diagnosis as only a limitation on the future enforces the idea that autism is a burden worthy of pity, and neglects to acknowledge the experiences of the people who are directly affected by the diagnosis: ASD individuals themselves.

An organization for the advocacy of a particular group should include those individuals in the discussion, for which Autism Speaks is notorious for its lack. Their boards and committees have few to no autistic people on them, as noted by ASAN. In 2009, Peter Bell, executive vice-president of Autism Speaks, acknowledged that they did not have any autistic people on their board, but were “looking at adding individuals with autism to various advisory committees”. In 2013, John Elder Robinson, who has a diagnosis of Asperger’s Syndrome and is author of the memoir Look Me in the Eye: My Life with Asperger’s, resigned from the Science and Treatment Boards, explaining that Autism Speaks does not advocate for autistic individuals and that its “legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.” To have one of very few autistic individuals in the organization resign because he felt that Autism Speaks does not represent autistic people shows that the organization is not helping the people they try to represent. Autism Speaks is largely made up of parents and family members of autistic children, and their agenda often clashes with that of autistic individuals (Psychology Today 2013). An organization cannot properly advocate for and represent a group without including their voices in the discussion. As ASAN puts it, “Nothing About Us, Without Us!”

Positive Portrayal

Not all organizations portray autism as a bad thing. The National Autistic Society (NAS) is the leading autism charity group in the United Kingdom, and it states that its mission is to “provide information, support and pioneering services, and campaign for a better world for people with autism.” Having a focus on the lives of autistic people is what will bring positive change for ASD individuals and their families.

The NAS supports research to aid in understanding the scientific aspects of autism, but also believes that it is important to enhance the lives of autistic individuals. Autism affects individuals, and the NAS puts these individuals first on its agenda because they are the people who are affected. This is seen in its strong dedication towards research on intervention. Putting all resources towards research to understand the disorder and how it works does little to help the people who live with it. The NAS remembers its target group in research, and keeps them a priority.

Autistic individuals are represented in the NAS’s campaigning. In the NAS’s 2008 ‘I Exist’ campaign, it brings awareness to autism by including the voices of parents and autistic people. The campaign does not portray autism in a negative way and uses language that is uplifting and positive: sections are headed with “Think differently,” “Understand my needs,” “Act positively,” and “Transform Lives” (The National Autistic Society Northern Ireland 2008). Using positive language reminds society of the humanity of autistic people, bringing awareness to their needs and the changes that need to happen. By including autistic voices, others can try to understand the point of view of autistic people, and decrease the perception that autism is only a bad thing. The campaign proved successful, by being well received by autistic people and influencing changes in government policy (Waltz 2012, p. 228; The National Autistic Society). Being accepted by autistic people shows that the organization is appropriately representing them. The NAS is also aware of the manipulative nature of charity campaigns, and does not want to participate in the dramatization of certain issues. The director Martin Karem recognized that “there are also examples of the misrepresentation of the subject a charity represents within its advertising campaigns, in order to elicit pity, and I believe such examples are inappropriate, and potentially destructive.” By being aware of the culture of charities, and knowing how they want to represent autistic people, the NAS foundation is positioned to proceed in serving the autistic community effectively.

Conclusion

It can be observed that many autism charities tend to represent autism in a very negative way, but not all forget their target group. It’s unfortunate when the most well known autistic charities treat autism as a pariah that must be eradicated, but autism advocates are combating the stigma perpetuated by these groups. Much of society still has to work on how its members perceive disability, to remember that disabled people are people too, and treating them as a pitiful existence does not help them access their full potential. By supporting groups that put ASD individuals’ needs first and working towards taking away the stigma of the diagnosis, more people can be helped, and helped effectively.

Word Count: 2072

References

About Us. (n.d.). Retrieved March 6, 2015, from https://www.autismspeaks.org/about-us

Accept difference. Not indifference. (n.d.). Retrieved March 6, 2015, from http://www.autism.org.uk/

Berrington, L. (n.d.). A Reporter’s Guide to the Autism Speaks Debacle. Retrieved March 6, 2015, from https://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle

Horrific Autism Speaks “I am Autism” ad transcript. (2009, September 23). Retrieved March 6, 2015, from http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/

I Exist campaign in England. (n.d.). Retrieved March 6, 2015, from http://www.autism.org.uk/Get-involved/Campaign-for-change/Learn-more/Our-campaigns/Past-campaigns/I-Exist/I-Exist-campaign-in-England.aspx

Main Content. (n.d.). Retrieved March 6, 2015, from http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/

Research. (n.d.). Retrieved March 6, 2015, from http://www.autism.org.uk/about-autism/research.aspx

Stewart, S. (2008, February 1). I Exist. The National Autistic Northern Ireland.

Wallis, C. (2009, November 6). ‘I Am Autism’: An Advocacy Video Sparks Protest. Retrieved March 6, 2015, from http://content.time.com/time/health/article/0,8599,1935959,00.html

Waltz, M. (2012). Images and narratives of autism within charity discourses. Disability & Society, 219-233. Retrieved February 28, 2015, from University of California Davis.

Young, S. (2014, April 1). Stella Young: I’m not your inspiration, thank you very much. TEDxSydney. Lecture conducted from Ted Conferences, Sydney.

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