Thoughts on Autism, Perceptions, and Organization

Thoughts on Autism, Perceptions, and Organization

The idea for this piece came to me as I walked home across Beta Bridge this past April, a month where autism-related causes take central stage, and at UVA the west wall of the bridge. Debates in bioethics often reach into the public forum; we see the abortion debate, parental status arguments, and the ethical treatment of research subjects in the news quite often. The paint on the bridge was only similar to these, largely hateful, protests in its quest for an audience. Somehow, it expressed different concepts of love across a barrier in how we see autism rather than disgust at the worldviews of others. This is a piece filled with conflict but also with caring.

The bridge was a pale powder blue with white lettering. There was a large puzzle piece outlined at one end, the logo of the Autism Speaks movement. In large letters it read “Autism Awareness Month.” I didn’t give it much thought on my way into class. By the time I was walking home, red paint had been added over the white and blue. Over “Awareness” was “Acceptance” and over the puzzle-piece was a heart. For the first time I was motivated to look into what have become two distinct camps surrounding one label, autism. By the end of the week, the bridge had a fresh coat of paint.

        From a quick glance at their website, it is easy to see that the Autism Speaks movement revolves around the science of autism. They seem to be eager to share possible signs of new understanding, novel treatments, and any potential cure. Though, for this group, April is Autism Awareness Month, it may be more accurate to say they are pushing for action. Specifically, they aim to support research into the understanding of and potential addressing of autism. Their site is aimed towards parents or relatives and features resources for these groups prominently. This is the perception of autism I had be exposed to before my walk home. This is Beta Bridge in the morning.

        The red “Acceptance” lettering aligns with the views of another group, the Autistic Self Advocacy Network (ASAN). Before I briefly touch on what this group stands for, I need to address a failing in this piece. In preparing this article, I did not consult anyone in the autistic community. The basis of the ASAN is the concept that spans the top of their site, “Nothing About Us Without Us.” For the ASAN, April is Autism Acceptance month. This detail can fill in a lot about their goals. Their site is set up to be well-suited for users on the autism spectrum, they advocate for the involvement of those with autism in the discussion of autism, they are a community that doesn’t see autism as a handicap but as a unique part of each of those affected, essential to who they are and not to be subject to treatment. They support the autistic community by giving it a voice. This is a perception of autism that is new to me. This is Beta Bridge in the evening.

        I don’t know which of these movements is where I best fit in. I have trouble with the idea that research into autism treatments may be contrary to the wishes of those on the spectrum. But I also have trouble with the idea that a group intent on helping a subset of people should not be placing the wishes of that subset at it’s very core. I have put a lot of thought into each of these movements the past few months. I can’t say what movement I will have on my heart next April.

        One thing has become clear to me. Though their goals may be at odds and many may take sides both of these groups care deeply about those on the spectrum. They are only caring differently.

 

Here are the websites for each of the groups mentioned:

Autism Speaks: https://www.autismspeaks.org/

ASAN: http://autisticadvocacy.org/

 

If anyone would like to express their own views, reveal how they see the actions of either of these organizations, or provide a different take on the tension I outlined between Autism Speaks and the ASAN, I would love to hear from you.

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