Neurodiversity: (n) the variation and differences in neurological structure and function that exist among human beings
Neurotypical: (adj): relating to or showing typical neurological behavior and development; (n) a neurotypical person; Abbreviation: NT
Neurodivergent: (adj) relating to or showing atypical neurological behavior and development, as in autism spectrum disorder or dyslexia; (n) a neurodivergent person; Abbreviation: ND
Confession #1: I am actually autistic.
Wow! That is a massive load off my chest! I have been living in the neurodivergent closet for the last twenty years, since I was first diagnosed with Asperger’s Syndrome – now known clinically as one subset of Autism Spectrum Disorder (ASD).
For decades, each April was known as Autism Awareness Month, but a few years ago that was changed to Autism Acceptance Month. That is an important distinction, because it’s one thing to acknowledge the existence of something. It is another thing entirely to embrace it. It is in that spirit of acceptance, that I’m coming forward to reveal my authentic self.
Confession #2: I identify as “Autistic” or as an “Autist,” not as “having Autism.”
For me, saying someone “has autism” implies a couple of things. First, it implies that it’s something that can be cured or will eventually just go away on its own. Second, it seems to minimize ASD as a simple condition, which diminishes the fact that living with this is a genuine and constant challenge. I can and do work on managing the symptoms, but I cannot make the underlying condition itself disappear. It’s part of me that’s here to stay.
Just a note that this semantic difference is currently a bit of a hot topic in the ND community. Others who are autistic may feel otherwise, preferring the term “having Autism.” Language is power, and for some can be triggering. It’s perfectly acceptable for a neurotypical to ask a neurodivergent what their preferred term is. Just accept that their response is not universal, and should be applied to them specifically and not to all ND.
Confession #3: I’m not “high-functioning.”
Terminology like high- or low-functioning implies that there exists a linear or hierarchical element to the functional abilities of Autists, but it is nowhere near that simple. It’s much nearer the truth to think of Autism Spectrum as lying across multiple parameters like a fractal image. Some of the more neurotypical behaviors align along some arrays, while more neurodivergent behaviors align across others, making each autist’s ASD nearly as unique as a fingerprint.
In fact, one of the more widely used assessments for ASD measures ten distinct parameters. These include Aggression, Anxiety, Auditory Sensitivity, Depression, Eye Contact, Fidgeting and Tics, Fixations, Flat Speech Pattern, Posture Abnormality, and Social Difficulty. Based on responses to questions, it creates a spider web diagram to identify where on the kaleidoscopic spectrum a given Autist falls. In my case, I have struggled at various times in my life with seven of these ten. I have learned to manage most of them but still have clear challenges with three – Eye Contact, Fixations, and Auditory Sensitivity.
One thing of note here. Unless your sole intention is to trigger an Autist, please don’t ever say something like, “Funny. You don’t look/act autistic.” Usually such a statement is not meant to be offensive, but it is. There is a reason that Autism is known as a hidden disability. Many of us don’t act like Rain Man or Sheldon Cooper – a couple of stereotypical ND characters from popular culture. Nor are we all the nonverbal autists that are one of the most common and widely recognized subsets of autists. ASD is a spectrum, and there is no specific appearance or way of acting that is common across all ASD subsets.
Confession #4: When I look you in the eye, I’m really looking you square in the mouth.
Your mouth is where the words come from, so that’s where I focus. I would look you in the mind since that’s where the words originate, but, well, I have no way of looking there so I’ve chosen the next most logical place. If you catch me not making eye contact, please don’t get offended and assume that I’m not paying attention. In fact, it may be because I’m very actively listening – by watching your lips.
And please don’t get self-conscious if you catch me staring fixedly at your mouth. You probably don’t have a piece of broccoli stuck between your teeth. I’d tell you if you did because it would seriously impair my ability to focus on listening.
Confession # 5: Admitting ASD is not career suicide, but like any disability, it has its challenges.
I admittedly struggled with this one for the last two decades. I was very concerned about the perceptions of my ability to perform my work – and even more about the perception of my ability to lead others in theirs. Hence it has taken two decades for my “coming out” in this article. In that time, I could count on one hand the number of professional contacts or colleagues who I let know about my condition. Those were only people who I trusted to maintain confidentiality. The truly funny thing is that when I shared this secret with that small sampling, almost every one of them fully accepted me being ASD without reservation and continued to treat me the same as they always had.
So you may ask why I’m revealing this to the world now. The reality is that I’m now at a stage of my career that I want to lead by example. Twenty years ago, I had no leader to emulate or who had blazed a trail for me and my Asperger’s. It could even be argued that in the early 2000s there remained a stigma around anything remotely akin to autism.
Today that stigma is lifting. There are corporate initiatives to recognize neurodiversity as elements of Diversity, Equity, and Inclusion (DEI) programs. There are grassroots efforts from within the ASD community to identify and illuminate some of the unique skills and abilities that the neurodivergent can add to an organization. If my revelation of being ASD helps just one other ND, then it’s worth it.
That said, I’ve prepared myself for those that may give an eye roll and respond something like, “Oh, NOW he makes sense,” or even those who openly and vocally doubt the truth of my diagnosis. Truth be told, the former group may not be entirely incorrect. It is tiring to keep up a front all the time. I may be very effectively managing many of the parameters of the spectrum, but that can be a real challenge to manage yourself constantly.
This is part one of a two-part series. To read the second part, click here.
Doug Rabold is a committed IT Leader who has had direct oversight of over a dozen different ITIL processes. Doug has led teams of up to 350 resources and managed contracts and asset values totaling over $60 million. Doug successfully transitioned from a sales career to IT Operations in 2009. As a lifelong learner he attended the University of Illinois and holds numerous IT industry certifications and is an HDI Certified Instructor. Doug has well over ten years of experience in public speaking. Doug is currently serving as President of the HDI National Board of Directors and on the Strategic Advisory Council for ITAM Forum. He previously served two terms on the Cherwell Customer Advisory Board helping guide development of the ITSM tool from a customer perspective.