New year. New decade. A good time for society to embrace a new attitude about autism, which considers the wellbeing of those who walk in these shoes. There are many on the autism spectrum who live with a compromised sense of self, who deserve to be able to work on building self-esteem without society thinking less of them by viewing autism as a disorder. Autism is also frequently described as a “disability” or as a “condition,” both of which carry the same potential consequences. Public discourse about autism that refers to it in these ways can stymie progress on self-esteem building by adversely affecting one’s emotional state. I should know. I have been living on the autism spectrum for 50 plus years and had to fight for the better portion of these years to learn how to love myself.
There is arguably no greater gift than the gift of self-love, without which true happiness essentially becomes an impossibility. Too many on the autism spectrum have been denied this gift, largely because they have a difficult time coming to terms with their view of themselves as being different from everybody else, because of the unique challenges they confront on a regular basis and because of their knowledge, or belief, that they are perceived as having a disorder or as being disabled. However, it is never too late for these folks to work towards self-love and attain it. I am proof that it can happen, and I am not the only one. Every well-intentioned person is entitled to a strong sense of self. Let nothing undermine one’s pursuit of it. When more of us feel good about ourselves, the world becomes a better place.
The American Psychiatric Association publishes a reference manual known as the DSM (the Diagnostic and Statistical Manual of Mental Disorders). The DSM is the authoritative tool used by psychiatrists and other clinicians to diagnose, define and classify mental disorders in order to improve diagnoses, treatment, and research. As such, the DSM’s conclusions inevitably influence public discourse about the disorders documented therein. Autism Spectrum Disorder (ASD) appears in the fifth edition of the DSM as one such disorder.
In some respects, autism’s listing in the DSM as a disorder is a good thing. As a result, clinicians are able to provide beneficial treatments and interventions, at least some of which would not be available had it not been for ASD’s inclusion in the DSM. Furthermore, the DSM leads to ASD diagnoses, which entitle some on the spectrum to much-needed government assistance. For those whose autism profile carries challenges that are particularly acute, “disorder” may be relevant. However, for others on the spectrum working on building self-esteem and who feel that their autism profile is core to who they are, the autism/disorder association is toxic.
Perhaps I am trying to have my cake and eat it, too, when I say that the work that clinicians perform in helping folks on the autism spectrum achieve better outcomes is essential, and yet, autism should not be thought of as a disorder. But then again, maybe not. Is there a rule that states that you need to have a disorder in order to be helped? All of us could use some guidance of one form or another, simply because we are human, and to be human is to be imperfect. This is nothing to be ashamed of. Clinical intervention has been instrumental for me and others, not for trying to fix or cure a disorder but for helping us find greater happiness and live more meaningful, connected lives as autistic people in a predominantly nonautistic society. I don’t feel as though I have a disorder. Instead, I have accepted the fact that I am different. The help I have received eventually led me to an understanding that acceptance of the diagnosis as well as self-acceptance are required if I was to build self-esteem to the point of finally learning how to love myself.
Wondrous stories can be told of autistic folks. In Greta Thunberg, we have Time’s 2019 Person of the Year. 10 percent of the workforce at Walgreens now consists of “disabled” employees, many of whom are autistic, and perfectly capable, if not exceptional, at their jobs. The dance group Autism With Attitude (AWA) recently appeared on the British television series The Greatest Dancer to a standing ovation. Temple Grandin, Ph.D., author, professor and revered autism community advocate, is a National Women’s Hall of Fame inductee. Organizations like the College Internship Program (CIP) are successfully preparing their autistic students and others with learning differences to thrive in positions of leadership, at the workplace and in college. And the list could go on and on. In my view, these people are not disabled. Rather, they are exceptional and use their spectrum profiles as assets. Hopefully all of them feel this way about themselves. They certainly deserve to.
It all comes down to how we choose to look at things. The DSM and society at large see autism as a disorder, although neither can tell me or anybody else on the autism spectrum that we must look at ourselves in this light. Ideally, all of us should be able to love who we are and work towards self-love if we are not yet there, though regrettably, the adverse emotive power of “disorder” often gets under the skin and sinks in.
Words matter. As such, let’s adopt a view of autism that does not compromise the sense of self of those who have been diagnosed and who are emotionally vulnerable. Furthermore, let’s communicate about autism in terms that are all-inclusive and which respect the diversity that is intrinsic to the autism spectrum. For example, “autism spectrum” without “disorder” immediately following. “Profile” instead of “disorder,” “condition” or “disability.” “Challenge” instead of “symptom” or “deficit.” The proposed wording is valid regardless of where on the spectrum an autistic individual may fall. Words matter. Choose them wisely.
Sam Farmer wears many hats, among them father, husband, musician, computer consultant and autism spectrum community contributor. Diagnosed later in life with Asperger’s syndrome, he writes blogs, records coaching videos and presents at conferences and support groups for the Asperger/Autism Network. 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.