This is an ENORMOUS topic. In fact, it is one of the main points of this whole blog - to explore what Asperger's/Autism means to me, and to others who share in an ASD journey. I certainly can’t cover the gamut in just one post. This will be the first of many conversations, just scratching the broad surface of my particular experience with ASD.
For the ASD novice:
Several times since beginning this journey, I have encountered the need to share a very broad overview of what Autism is - beyond the popular image - for someone who has only a pop-culture knowledge. The following description has seemed to work well for me to establish the basics and dispel some popular myths all in one:
What used to be referred to as Asperger’s Syndrome but since 2013 is now looped in under the broader term of Autism Spectrum Disorder (ASD), is not a mental health issue nor a disease. It has to do with neurological differences in the way the brain is wired, which manifest in specific impacts to interpersonal communication, emotional intelligence, and flexible thinking.
Every person with ASD is impacted in different ways, and no two people with ASD will have the same strengths and weaknesses. ASD cannot be “cured,” though certain side-effects of ASD such as anxiety and depression can be treated with medication and therapy. Because the root of the condition is neurological, many individuals with ASD can continue to learn, grow, and develop coping mechanisms and masking strategies to function, or appear to function, within the “normal” boundaries of mainstream society.
Historically, the condition was thought to affect many more males than females (1 girl was diagnosed for every 10 boys diagnosed), but recently the diagnostic ratio has been reduced to 1 girl for every 4 boys, and it is believed that the true ratio is closer to 1 woman for every 2 men, leaving many adult women undiagnosed.
For the ASD explorer:
A great resource I have found in both learning about and gathering tools for explaining Asperger's and Autism to others is The Asperger / Autism Network (AANE), at https://www.aane.org/.
Here, you can find useful articles to help explain ASD, and to explore specifically how it may be affecting you or others you know. They have a very enlightening article on "Asperger Profiles" that I would recommend, and which helped me flesh out the broad strokes of where I am having the most pressing challenges related to Autism at home and at work: https://www.aane.org/what-is-an-asperger-profile/
My ASD Profile:
As for my part, the AANE Asperger Profile resource helped me think through the most acute ways that my neurological differences seems to manifest as communication challenges, different ways of seeing and understanding the world, and overall areas of life where I have to expend more energy than most in order to implement work-around or coping strategies that help me interact in a more "neurotypical"* way.
My particular experience with ASD seems to manifest in several core areas:
Bottom-Up Thinking: Most people see the purpose, the concept, before then taking in the details. They see a person's face and their first thought is "face." My brain thinks in the opposite direction. I see the trees before the forest. I must process all the details before I can see the bigger picture. I see a person's face and my first thoughts are a cacophony of "brown eyes, bushy eyebrows, straight nose, high cheekbones, etc." before I even get to the fact that it's a face. In situations much more complex than simply seeing faces, like work challenges or the intricacies of family life, I might not even comprehend that there is a bigger picture until someone points it out to me.
Lack of Central Coherence: I have a particular difficulty in generalizing one context to another. Where most people will learn Skill A and be able to apply it right away in Situations X, Y and Z, I need to explicitly learn how to apply Skill A to Situation X, then how to apply Skill A to Situation Y, etc. This makes learning new habits both essential and challenging for me - if it is not already part of my routine, I must make a conscious effort in order to incorporate it, but once it is incorporated, I will keep a habit or routine to a fault, rather than naturally adapting the habit to meet new needs.
Black-and-White/Inflexible Thinking: Most people can intuit “grey” areas, and can think flexibly enough to navigate them. Everything is default black and white to me. If something is wrong, it is 100% wrong, 0% right. I have learned that this is an untenable way to function in society, but I require significant conscious thought to exist and function adequately in greys. This results in a natural tendency toward perfectionism, a difficulty in generating new or novel ideas, and a challenge with holding on to too many threads at once, or trying to switch back and forth too quickly from one way of thinking to another. I thrive in the ability to maintain one single focus at any given time - which can be both a great strength and a challenging weakness.
Lack of Social Pragmatics and Inability to Recognize Hidden Agendas: Interaction with other people comes naturally to most people. In most brains, general human interaction lights up the areas associated with releasing feel-good chemicals – serotonin, endorphins. In an ASD brain, human interaction lights up the amygdala – the fear center. I overcome this initial difference in neural wiring in most cases when I interact with other people, but it is a conscious effort, until I have built enough of a relationship with someone. Until then, and even then sometimes, every interaction I have with another person requires advance preparation in order for me to feel comfortable. This challenge also relates to difficulty in recognizing and interpreting subtleties in verbal communication such as humor, sarcasm and some expressions of speech, due to a default of literal interpretation, as well as a difficulty in naturally interpreting implicit social expectations, hidden meanings and agendas, “implied” messages, and other high-context interactions that require intuiting the emotions, motivations, intentions and thought processes of other people.
Inability to Naturally Interpret Nonverbal Communication: I do not naturally understand nonverbal communication and body language, which makes up so much of human interaction. A person can be saying one thing verbally to me while their body is saying something completely different, and I will have no idea, or, more likely, end up thoroughly confused. I have read books and done research in order to be able to manually interpret the most common forms of body language and facial expressions (resources which I will share in another post!). The fact that I don't naturally read nonverbal communication also means that it is a challenge for me to regulate my own body language unless I am consciously thinking about it, which can result in other people misinterpreting what I mean to communicate when interacting in person.
Lack of Self-Advocacy: This has been a tough one for me to grapple with, and I am still exploring how it manifests in me due to ASD, due to being a woman, and due to other aspects of my nature not directly related to ASD. For the ASD-related part, it affects me both physically as well as emotionally - I can reach a point of overload (too much emotion, too much confusion, too many distractions, etc.) where my voice will physically shut down. My vocal cords literally seize up, and the neural pathway that leads from thought to speech will short-circuit, and I would not be able to advocate for myself even if I wanted to - and in many cases I do want to, which makes the overload worse. Often the only way I can communicate once I reach this point is through written word, as so many others with Autism find solace. Thankfully I have experienced a tremendous amount of growth in this area over the last 10 years, in large part due to the diligent, gentle, and exacting ministrations of my husband, who has worked very hard to help me find more of my voice (more on him later...).
I do believe that is quite enough to be getting on with for now! :D I promise most of my posts will not be quite so dense.
If you found any of these descriptions helpful for understanding Autism, or for understanding how it may manifest in you, please share in the comments. The more people who are openly exploring this conversation, the more knowledge and awareness we will add to the popular (mis)conceptions, and the more we will normalize our many wonderful differences.
**Note: Throughout this blog, I will use the term "neurotypical" to refer to non-ASD-affected people, brains, and behaviors. This term, however, is of course not fully accurate, as everyone's brain is different, ASD or not, and just as with ASD-linked brains, no two neurotypical brains will be the same, either. The term, often abbreviated as "NT," is widely used as the closest approximation of an antithesis for ASD-linked people, brains, and behaviors - in order to simplify conversation - but by no means is meant to generalize or categorize beyond simply a differentiation between a person/brain/behavior that is affected by ASD and one that is not.