Autism, Culture, and Representation

On April 16th, 2009, AHEADD.org discussed topics relevant to adults with Autism and Asperger's Syndrome, such as education and employment.

April is National Autism Awareness Month.

April 2nd is World Autism Awareness Day.

April 16th is Adult Autism Awareness Day.

But there is no Children’s Autism Awareness Day. There is a day dedicated to adult autism awareness, but none for children’s autism. This disparity reflects a fundamental misconception about autism; autism is not just for kids. While there is a need to raise awareness of autism itself, the need to break the stereotype of autistic people as children is equally necessary.

Scott Robertson’s article about Neurodiversity, Quality of Life, and Autistic Adults introduces a troubling thought. There have been papers upon papers written about autism from a  biological, physiological, and psychological standpoint. But the study of the quality of life for autistic adults has been largely overlooked. Robertson uses Schalock’s (2000) 8 Core Domains to better understand the quality of life for autistic adults: self determination, social inclusion, material well-being, personal development, emotional well-being, interpersonal relations, rights, physical well-being.

When people think about autism, autistic adults are hardly in the picture. This exclusion of autistic adults as a community hints at an even greater problem: society creates most of the problems that autistic adults face. Society does this in one main way that underlies many other challenges..

We restrict the self-determination of autistic individuals. We speak for them, deciding what they want and do not want. We act as though we are aware of their capabilities and limitations, and as though it is our responsibility to be the voice that they do not have. In doing this, we ignore the basic human rights of autistic individuals, neglecting our commitment to certain ideals of ‘respect’ and ‘equality.’

One main way that society complicates the lives of autistic adults is by meddling with their roles in society, affecting their social inclusion and interpersonal relations. For years, we have crafted societal stereotypes of autistic adults, and we have used these models as a basis of understanding them inaccurately. Prejudice strips autistic adults of their individuality, and our ignorance to see beyond these misconceptions plays a large part in preventing autistic adults from being treated as ‘normal’. The ignorance to acknowledge that these misconceptions are even causing a problem further complicates the matter. Our social stigmas directly impact the relationships that autistic adults have with others. While we recognize that many autistic adults have difficulty with social situations, there are hardly any support systems available for them in this regard.

Their personal development as well as their well-being (in a material, emotional, and physical sense) is also hindered by the opportunities that society provides. Since we do not provide many living alternatives for autistic adults, many are trapped without autonomy in their parents’ households. As autistic individuals grow older, they watch the availablility of specialized support systems around them decline. Along with the deficiency of educational support systems lies the lack of mental health support. Their physical maintenance is restricted by how little people know about autism, which prevents them from being able to engage in many fitness group activities.

Many people think that autism is the problem but society has a greater impact on an autistic individual’s quality of life. Society is what causes many of the issues that autistic adults are forced to cope with. The moment an individual is acknowledged as ‘disabled’, society  strips away their power, their individuality, and their freedom.

The first step to erasing this inevitable misrepresentation of autistic adults is to acknowledge that there is a problem. Society must recognize the ignorance and the lack of resources in order to move forward. As society, a fundamental cause of the complications that autistic adults face, it is our responsibility to step up and address, not dismiss, autistic adults as enabled human beings.

References

Adult Awareness Autism Day: http://www.aheadd.org/adult-autism-day.html

Schalock, R. L. (2000). Three decades of quality of life. Focus on Autism And Other Developmental Disabilities, 15, 116-127.

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