What does it mean to be autistic?
There’s this quote in the autism community that has gained some traction over the years:
When you’ve met one person with autism, you’ve met one person with autism.
— Dr. Stephen Shore
This isn’t an incorrect statement, though I’d argue that by removing the qualifier, autism, the more inclusive and better quote is:
If you’ve met one person, you’ve met one person.
Which isn’t exactly an improvement as the intent, I believe, is to indicate that not everyone with autism is alike and no one represents the entire umbrella that is autism spectrum disorder.
Nor, for that matter, does any one person represent the totality of humanity or the possibility of what humanity can become.
When it comes to autism, the first thing I’ve begun to talk about is the complex nature of the disorder. There are three diagnostic levels, Level 1 is the most independent, Level 3 is the most dependent. Most people who are diagnosed on the autism spectrum exist somewhere in the Level 2 range of needs and dependencies.
Autism, as a disorder, is almost never light or sort of autistic. That’s not the nature of autism and because people on the spectrum are different and unique, autism often becomes invisible, especially to those who either haven’t been exposed to it or who don’t pay attention to some pretty significant differences.
One aspect of autism’s complexity is found in the number of comorbid conditions that exist when autism is present. These include:
ADHD
Depression
Anxiety
Irritable Bowel Syndrome
and so on
The list gets fairly long pretty quickly and when combined with the umbrella of autism spectrum disorder, suggests that anyone who is autistic is dealing with a lot of additional problems and stressors just be being alive and existing in a neurotypical world. The world isn’t designed for people with sensory issues that make lights and sounds and the presence of others, physical contact both wanted and unwanted, as often insurmountable obstacles to life.
I’ve come to recognize some aspects of life that making not only my autism more understandable, but also help in identifying the specific nature of Commander’s autism and how best to approach the difficulties he has in everyday life.
For example, there are autism profiles, which are the variety of and degree of difficulty with aspects of autism. One of these, mostly recognized in England, is Pathological Demand Avoidance or PDA. From the readings available, both online and in print, this is an anxiety related aspect of autism that results in someone with PDA reacting to any demand placed on them, regardless of the seriousness of incidental nature of the demand. The PDA profile suggests that demands are met with a Fight, Flight, or Freeze response causing an automatic “No,” from people, physically lashing out or running away, or simply shutting down.
Understanding this about myself and about Commander has led to changes in how I approach conversations, preparing for transitions, and making requests. Instead of barking an order in a firm voice, I’ve found suggestions, wondering, vocally thinking about things, and other non-demanding forms of communication to work most effectively.
Unfortunately, knowing this now does nothing for the many times at work or among family and friends where demands were met with clearly negative response and it doesn’t change the nature of people pushing my buttons until I got mad in order to get me to say anything to them. Fight. Flight. Freeze.
Being autistic means there is a deficit in theory of mind. Many people refer to this as empathy, or the ability of someone to try and put themselves into someone else’s shoes. Within this context, there are those who claim to be autistic with high empathy, which is a direct contradiction to the criteria used in determining an autism diagnosis.
Since I needed to understand this as part of my own journey, and after a lot of reading, I’ve adopted a description of empathy in two parts:
The ability, without assistance, to recognize an emotionally significant situation or event; and,
The ability, also without assistance, to respond appropriately.
What I’ve found in communicating the “one person with autism” individuals is that many who claim high empathy tend to describe highly reactive anxiety to the changes in people and events around them and not an actual recognition of what’s going on. Rather than being emotionally observant, people with autism are environmentally reactive.
Which has been the case with me in the past. At some point since being diagnosed, though, I’ve turned off the part of me that is observant toward emotionally significant events or situations. Instead, I allow myself to be in the environment without being part of the environment – unless I’m forced to be aware of what’s happening around me. This isn’t to say I’m not aware of what’s going on around me, but that I’m not actively looking for what the people around me are attempting to convey in nonverbal language and subtext.
As with a majority of people with autism, I deal with ADHD. I also deal with depression and anxiety. I have IBS, though that’s under control and has been for years. I deal with some significant fallout to being touched by anyone not Erin or Camper or Commander and often dance around people to avoid the physical contact.
I’m also almost totally face blind and have recently come across something called aphantasia, which is a way of saying I don’t easily form mental images, if at all, and when I know something I simply know it. Directions, details of places, pictures, TV and movies, I don’t see these things, nor do I form images of what I’m supposed to see when it comes to stories or whatever I simply have to feel my way through it in my head and the answer just appears.
I can’t speak for everyone with autism, nor do I want to, but I can say that having autism is a part of one’s life. For some it’s really hard, for everyone it’s a completely different way of interacting with the world. People don’t come down with autism, they’re born that way. And when we start to interact with the world, it’s often a deliberate and intentional act. What causes it to be deliberate or intentional depends on the individual, but you can be sure that meeting someone with or without autism is meeting a single individual and that individual with or without autism is complex. Autism merely adds a myriad of complexities. And it’s that myriad of complexities I ultimately want to understand and to help other people understand.