Autism Month Essays: What is Wrong With This Picture?

Google Glass
By Dan Leveille (danlev on Wikimedia) - Own work, CC BY-SA 3.0,
https://commons.wikimedia.org/w/index.php?curid=33220901

A very large failing in the autism conversation is inherent in the way things about autism are presented. Regardless of the merits of the content, the way it is presented to the public feeds a cycle of structural ableism and structural racism that do great harm even when the content itself appears positive.

A KQED Science news article is a typical example of how structural ableism and structural racism are perpetuated in a brief news post. Even a cursory look at the article makes this apparent.

The title of the article is "Google Glass Flopped. But Kids With Autism Are Using It to Learn Emotions." The reader is immediately hit with a trope about autism that is ableist and incorrect. The title is misleading and sets the tone for the way the content is presented.
The presentation implies that:

a. Autism is an illness rather than a disability which is false; b. The use of "kids with autism" implies person-first language is accepted by the entire autism community which is false; c. Autism is prevalent exclusively in children, reinforcing the trope that autism did not exist until recently which is false; d. Children with autism don't know what emotions are and must, therefore, learn them which is false.

 Rather than including a discussion of prosopagnosia, a form of visual agnosia characterized by an inability to recognize faces, and the fact that a vast majority of autistic people have some form of this condition, and rather than approaching the research of Google glass as potential assistive technology to help individuals with prosopagnosia recognize greater detail in faces and thereby recognize changes in expression, the way this study is presented in this article pathologizes autism, and displays the study as a way to teach autistic people human emotion, something they already know. Foundational misunderstandings that parents and family members harbor towards their autistic loved ones stem from the promotion of these stereotypes about autism. The exclusion of what impact conditions like prosopagnosia, synesthesia, and auditory processing disorder, can have on how an autistic individual of any age interacts with others and how those conditions are improved by Google glass is also critically omitted from the article.

No attempt at defining for the reading public why autistic people don't make eye contact is done. Increased eye contact is simply lauded as an improvement in the symptoms of  autism as a medical ailment. Having lived in societies where making direct eye contact can be seen as rude, invasive, and a sign of promiscuity, I find the issue of eye contact not being addressed in general, and how much eye contact is appropriate by culture not being addressed in particular,  rather sad.

A deadly disservice is done when research on how to implement assistive technology is focused on autistic children alone. This implies that autistic adults somehow can't benefit from new supports and assistive technologies. When research focus is only on autistic children with verbal speech it is a devastating disservice to nonspeaking autistic populations who might benefit from the same assistive tech. When a piece of research is presented as if the sole focus is children who are well off and white it perpetuates the myth that autistic children are exclusively white, upper middle class, and geeky people who have social skills challenges. This increases the likelihood of continuing a cycle of misdiagnosis of autistic children of color that denies them supports in education, health, and assistive technology. This continues a cycle that results in the appearance of autistic children of color presented as "more severe" than their white peers.  It is a perpetuation of racism and ethnic bias in autism research and the autism conversation.

The presentation of this research in the KQED Science article as a tool for potential home based therapy for learning emotion rather assistive technology to help autistic people differentiate emotions they already have and know in the people around them is ableist promotes the trope of the autistic child lacking a piece of what makes us human. The damage in presenting autistic people in general and autistic children in particular as lacking or incapable of emotion can lead to life-threatening situations and irreparable harm in the name of  therapy, education, and behavioral support.  It can change attitudes in care providers that increase the potential for harm to vulnerable autistic children and adults needing intensive supports. How information is presented matters just as much as the content itself. Especially when how something is presented can mean a complete shift in how an autistic child is perceived to be by our society as a whole.

The most critical part of this study, an elephant in the room of the autism conversation, is that this study was conducted in Silicon valley. The discussion of wide dissemination of Google Glass for autistic children as an assistive technology tool is an insult to middle to low-income families and autistic adults who might benefit from them. The glasses are a whopping $1,500, and this excludes the monetization of any app the glasses would be paired with for therapy. Even if the cost of production dropped to between $299 and $500, expecting families to afford this when they cannot even afford basic communication devices, additional therapies or in-home supports critical for their children's ability to thrive as adults insults. The conversation in autism policy continues to be driven by the rich and those with power and privilege. The irony that this study could have been conducted collaboratively in a classroom population of title 1 school autistic children in Oakland is not lost on me. Why did the research team choose to ask for volunteers for phase 2 of this study when study candidates could be gleaned from the greater autism community in such a way that full inclusion could be achieved?

If the transformative change in assistive technology available to the autistic population is really meant for all, then research policy must dictate that funding allotted to such research include the entire autistic population across economic communities, across ages, and across degrees of disability.

Until that happens, it should be understood that what is being read as research content much of the time is a method of repackaging an ableist presentation of autism research; an extension of structural ableism and discrimination driven by negative tropes embedded in public policies on autism and how the public is asked to view it.

No inclusion in society will be possible until these disparities in the way research is conducted and information about the research distributed are addressed.