It may seem counter-intuitive that there would be any difference between these, and yet, the distinction, to many in the autism spectrum community including me, is actually quite significant. Autism is referred to as a spectrum because considerable diversity exists within our community with respect to the types of challenges we face, the levels of severity of these challenges and attitudes about the diagnosis. As such, differences of opinion are natural and understandable, as is dissent. I therefore validate those who disagree with me about there being an important distinction between "autistic person" and "person with autism".
I self-identify as an autistic person, or, put more simply, as "an autistic.” My autism profile is core to who I am, largely because I worked quite hard at accepting, and ultimately embracing, the diagnosis, knowing deep down that if I failed at my efforts at acceptance, my sense of self would remain compromised and I would never be able to find true happiness. A late diagnosis at age 40 led to a call to action and to a sense of urgency in pursuing self-acceptance in that decades of relatively low self-esteem and half-baked happiness had already gone by and all of us only have one life to live. Within a few years' time, I felt as though I had attained my goal and could finally say to myself that I love who I am and nothing can ever change that.
Back in the early '70s when I was a little shy of three years old, I was diagnosed with a learning disability in auditory processing. Autism didn't enter into the picture at the time because it wasn't being diagnosed the way it has been in more recent years. Not knowing any better, I thought of myself as "somebody with a learning disability,” and consequently, I fell into the trap of viewing it as an undesirable condition that somehow needed to be fixed. I worked hard at overcoming my need for special education as soon as possible because being a special ed student continually reminded me of the learning disability and made me feel different at a time in my life when I didn't want to feel or be looked at in this way. I often rebelled against it, most notably when I immediately and frustratingly said no to an offer to take the SAT's untimed, insisting that I be evaluated on the same terms as my peers. Not a wise decision in that my challenges with reading comprehension and my slow pace of work and information processing left the verbal portion unfinished, and by more than merely the last few questions, leading to a substandard score on a high stakes test. Little did I know, my self-unaccepting mindset was eroding self-esteem and setting me up for a life of discontent.
The Diagnostic and Statistical Manual of Mental Disorders, currently in its 5th Edition (the DSM-5), is widely regarded as the authoritative reference guide for diagnosing mental disorders, including learning disabilities and autism. The DSM-5's guidelines for diagnosing autism refer to it as "autism spectrum disorder" (ASD). ASD is described as involving a wide array of deficits, symptoms and restrictive, repetitive behaviors requiring varying degrees of ongoing support depending upon severity level. Not surprisingly, and regrettably, the DSM-5's characterization of autism, in conjunction with the reference guide's influence on literature and public discourse about the diagnosis, invites stigma, marginalization and self-deprecation.
The DSM-5's ASD diagnostic criteria are valid in the sense that the challenges that are documented are indeed challenges with which individuals across the autism spectrum contend. However, the DSM cannot dictate what autistic people's attitudes toward their diagnosis should be. It makes sense that those individuals in the community whose challenges are relatively severe are likely to view autism as a disorder or condition which hopefully will be curable someday. Conversely, there are those in the community whose challenges are relatively mild, including me, who may view the diagnosis as being integral to self-identity, as bringing not only challenges but strengths and unique attributes as well. Many of us view autism as an alternative neurology which reflects humanity's natural neurological diversity, not as a mental disorder to be fixed or cured but which instead is worthy of acceptance at the societal level as well as deep inside the autistic self. This outlook on autism exudes optimism and gives those autistics who struggle with self-esteem a goal to work toward, that of self-acceptance. Autistic individuals who are working hard at learning how to love themselves, which was a journey on which I once embarked, deserve to succeed in this endeavor but won't get there unless self-acceptance is achieved.
So what does all of this have to do with "person with autism" and "autistic person" not necessarily implying the same thing? It comes down to the fact that words matter, even a word like "with,” which seems so trivial on the surface but which can carry plenty of weight when used in certain contexts. Arguably, "person with autism" implies that autism is a mental disorder, as the DSM-5's ASD diagnostic criteria suggest. By contrast, "autistic person" or "an autistic" allows for autism to not be associated with a mental disorder, condition, disability or some other potentially toxic descriptor. These wordings invite those of us who have accepted or embraced our diagnosis to feel validated and accepted for who we are. They also allow those autistics who are striving for self-acceptance to feel supported in their efforts.
Words matter. Let's be cognizant of the implications of the words we use to describe something or someone, ideally while keeping decency, positivity and empathy top of mind.
Sam Farmer wears many hats, among these father, husband, musician, computer consultant, and autism spectrum community contributor. Diagnosed later in life with Asperger’s Syndrome, he writes blogs and articles, records coaching videos, and presents at conferences, sharing stories, ideas, and insights as to how one can achieve greater happiness and success in life despite facing challenges and adversity that often interfere in these pursuits. To learn more, visit samfarmerauthor.com.
“A Long Walk Down a Winding Road: Small Steps, Challenges, & Triumphs Through an Autistic Lens” is available on Amazon and can be purchased at all major booksellers.