My Experiences with Autism in Adulthood
I have always been fascinated by the intellectual.
I do not think of myself as intellectual, and I would never bestow that adjective upon myself (this is for other people to call you), but the idea of learning something new as a gateway into whole worlds of thought and understanding is awe inspiring. And the wonderful thing about learning is that in a free society, you can choose what you learn.
Periodically, throughout my life, I have suffered from the kind of depression that hindered my ability to function. Depression is renowned for making people feel heavy and constricted, where not only the body feels sluggish, but the mind, too. The simple act of learning helped me through these difficult times, and it is something I still turn to today. I think the reason that learning can help with depression is that when you are feeling stuck in a heavy tar-like inertia, learning something new can steadily introduce feelings of excitement or intrigue, and feeling something other than depressed suddenly feels possible. Learning is profoundly about transition. You move from a cold state of ignorance to a warm state of awareness or knowledge, and this transition comes with feelings of accomplishment and worth. What better way to help you out of feeling stuck and frustrated than a method of transition?
I have recently come to understand that I am neurodivergent and have autistic traits. I do not know if I have autism. From a cursory foray into the therapeutic world of autism management, it seems to me that the field is still, even after a wealth of excellent research, in its infancy. There appears to be infinite diversity within the ‘neuro’ diversity and still much disagreement among the experts. Within this environment, I am personally not convinced of the diagnostic power of any tests. However, this is not to undermine the therapy and integral assistance that autism experts can provide to those with autism. I am in the privileged position of being able to maintain my autonomy and provide for my family without the need for autism therapy. I have come to understand myself quite well and am aware of the triggers and signs that lead me to burnout, and I am fortunate that I have coping mechanisms to help keep my life manageable.
The workplace is a common source of agitation for neurodiverse people. For me, it was yet another environment that just felt somehow out of place or out of sync with what I needed to function. I would tell myself that it was ‘just work’ and the reason I got so burnt out and fatigued was because working results in feeling tired.
The question, “how are you?” remains one of the worst things to ask me. The question bellows intrusively through the clouds into my consciousness, and the inhabitants of this land just all look at each other and shrug. “Are they talking to you?” I feel at any moment in time, there are a number of things being mulled over, but there is no unifying feeling of goodness or a suitable generalized umbrella term for okay-ness. Honest answers just don’t seem like they would be appreciated. “I don’t know,” “I’m on a personal journey of navigating confusion,” or “Hang on, let me peer into the abyss and see if I can find something to talk to you about,” would invite confused stares. Of course you have the option to just reply, “I’m fine, how are you?” But I don’t think neurodivergent people like giving this response, because it wasn’t given in sincerity. It was another coping mechanism.
I had a deathly fear of meetings, especially large meetings, especially large meetings where I might have to contribute something. The thought of having to coordinate and chair a large meeting filled me with dread; it was hard enough being in the passive audience. The need to focus on driving a meeting forwards and having to remain current and responsive was impossible next to all the stimuli I was trying to process. I consequently felt slow, frustrated, and even stupid.
Meetings in the morning, when my depression was typically at its peak for the day, were agonizing. To give an idea of what those felt like, it was like being attached to a bungee cord at the back of an aircraft hangar while a storm raged outside. I needed to summon the strength to race all the way to the entrance and engage with the storm, and that was just so I could come off mute and say, “Hello. Yes. I’m here.” Meetings, really, are to communicate information out to the team and offer clarity to anyone needing additional information. So, theoretically, meetings should not really be work. The reason they are work is because managers are trying to put accountability on team members to drive a project forwards. Meetings quickly become political and mired in personal feelings. For a neurodivergent person, this is excruciating. The meeting is more than just sharing information; there are layers of emotional nuance and personalities to navigate. The neurodivergent mind will quickly go into overdrive and barrel towards burnout. When the meeting also has high levels of chitchat, this just rubs salt in the wound.
There have been attempts in workplaces to address neurodiversity, and some companies have tried to focus on strengths of individual team members, and use them to maximal impact. This is in contrast to having employees focus on areas where they do not feel comfortable and consequently productivity is hindered. However, as usual, these initiatives are not developed intelligently as the time needed for this change will rub up against the quest for short-term profits and the need to massage senior leadership and shareholder grievances. Simply having these initiatives as part of periodic company trainings is enough for the company to market themselves as ‘neurodiverse friendly’ and they really do not appear to be interested in the actual outcome.
I personally feel that a neurodiverse employee should be able to say to their manager, “Look, I know the ditch needs digging. Here is my shovel and here are my coping mechanisms. Let me do it how I need to do it.” If this was made possible, companies would have formidable employees at their disposal, but it requires an intrepid shift away from the status quo.
Learning about autistic burnout was yet another aha! moment for me. Something else that helped pull together once disparate memories into the same category with the same foundation. I have lost count of how many times I have told friends and colleagues after multi-peopled meetings that my head felt like a smoldering ash heap. I have always striven to maximize moments of solitude throughout my daily routine to help me decompress and re-energize. Lying on my bed with a pillow placed on my head to muffle sound, block light, and provide a gentle tactile compression was always refreshing. Workplace environments tend to be anathema to sensory protection, and I was not surprised to read that many autistic people seek prolonged periods of respite in bathrooms; I remembered doing that in high school during free periods. Locking the door, sitting down to face the reservoir, and folding my arms on the top of the tank to take a nap.
Burnout is obviously an unpleasant state to be in, but I have wondered if oncoming burnout drives me, creatively. I do push myself hard to make good use of my time, and I had rationalized this attitude as a virtue – our time alive is limited, and maximizing experiences is, overall, a good thing. I’m sure it is a little self-destructive, but sometimes when I can feel burnout approaching it feels exciting, and I find that I want to throw myself into this abyss in a blaze of creative glory. My output and focus seem heightened as I race towards burnout, and I even start to feel a bit more unhinged, which I think can assist creatively. The actual burnout is still awful and mired with feelings of inadequacy, but I think approaching burnout can be seductive.
I think the field of autism is going to struggle for many years yet. The struggle to define autism will lead to an expansion of the language used to describe it, and as the language expands, pinpoint definitions disappear. To complicate matters, as the language within the field of autism expands, culture is created. When neurodiverse people compare and contrast experiences, rail against neurotypical norms, and bond over coping mechanisms a community is formed that will serve to reinforce the language used and core views about themselves shared within the community. On the one hand, it is reassuring to know that others have shared the same kind of problems as you and perhaps even have advice for said problems, but it could also serve to solidify group biases and spread disinformation. The presence of a culture also complicates one’s relationship to autism in the same way as sexuality. If x is innate and visceral within you and it differs from others, you can identify as “I am x.” If x has a culture, you can say, “I identify as x.” Cultures, by their nature, destroy individuality, which is something you might be trying to understand in the first place.
I sometimes wonder if even the terms neurodivergent and neurotypical are even useful. How are they juxtaposed with each other? There is immense diversity within neurotypical, too. This language is also problematic because it can create us and them mindsets. I have seen people complain about neurotypicals making life difficult, and you cannot help but ask, “What? All neurotypicals?” For there to be a recognized divergence, there needs to be strong definitions of typical and divergence. It is possible, using all diagnostic tools at our disposal (neuro and behavioral), the divergence could be defined. But could we ever thoroughly assess enough humans to find something consistent?
We have our work cut out for us.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.