I did it again, it was wrong, and I’m sorry.
In my first blog post (Breaking Down & Building Up), I wrote about the moment my wife and I received our son’s formal diagnosis by recounting several of the times when we have been “broken down” in the two years since then.
But by starting my first blog post in such a dramatic (and somewhat cathartic) manner, I inadvertently helped to perpetuate the naive perception that having one’s child diagnosed with autism will cause years of sadness and heartbreak.
Indeed, there have been a lot of tears in the last two years. (Heck, I’m crying right now while writing this in a Books-A-Million coffee shop.) But the tears are not the fault of my son. Nor are they the fault of autism. More often than not, my tears start when I recognize yet another way in which people’s ignorance, arrogance, or fear are likely to interfere with my son’s pursuit of his fullest potential.
Sadly, it is often MY ignorance, arrogance, or fear that hampers my son’s success. Nearly three years after the diagnosis and after two years of studying the topic, I still slip into occasional self-pity that is ultimately detrimental to my own son’s well-being. (I’ll write more about ignorance, arrogance, fear, and self-pity in a subsequent blog post. That’s all the self-flagellation I can handle for the moment.)
The point here is that even my default language (and, I sense, most people’s) is more reflective of the deficit-based perspective typical in the medical/psychological fields than it is of the neurodiversity perspective promoted by authors like Steve Silberman and advocates like those in the Autistic Self-Advocacy Network (ASAN). In fact, the first draft of the first peer-reviewed research article to come out of the College Autism Network was criticized by one of the reviewers who noted
“…the use of words like ‘inability,’ ‘challenges,’ and ‘difficulty’ are deficit-based words that immediately frame students with ASD as ‘less than’ those who do not have ASD…I am sure the authors do not intend it to be so, but the impact of keeping this language and phrasing in the document is actually further damaging, as it positions students with ASD as challenges, problems, and difficult as people.”
In the revised version of that article, the one that was ultimately accepted for publication in the Journal of College Student Development, we revised our language in an effort to avoid perpetuating the deficit-based perspective of autism. Nonetheless, there is considerable disagreement about the appropriate use of language associated with autism (see Lydia Brown’s article for details), with members of some organizations preferring “identity-first” language (e.g., autistic student) while other advocates (and the APA manual used by most academic journals) promote “person-first” language (e.g., individual with autism). The students we interviewed for one of our recent studies used a wide variety of terms when describing themselves and others with autism.
Moreover, although the American Psychological Association labels autism as a “disorder” and the medical field speaks of “co-morbid” conditions (other medical or psychological conditions occurring concurrently with autism), some advocates challenge the use of pathological terminology to describe what they view as a manifestation of “neurodiversity.” Complicating matters further is the recent change in the Diagnostic and Statistical Manual (DSM-5) that eliminated Asperger’s Syndrome as a distinct diagnosis and folded it into the broad “Autism Spectrum Disorder” (ASD) label. Furthermore, rapidly increasing rates of diagnosis and emerging research suggesting gene variations linked to autism are also common in the broader population have undermined any effort to claim the existence of a universal understanding of what is meant by the term “autism.”
Because the College Autism Network seeks to bridge gaps between stakeholders, we are consciously not “picking a side” regarding terminology. Rather, we use both person-first and identity-first language throughout our materials but try to retain students’ and authors’ original language whenever possible.
To learn more about the College Autism Network’s beliefs, principles, activities, and goals, please visit www.CollegeAutismNetwork.org/about/