I find is very difficult to explain ASD to people because they want some kind of tangible, permanent feature as an example for it to make any sense to them. Since many of the features of ASD are in varying degrees and manifest themselves under certain circumstances, the entire concept of ASD seems "fixable", just by changing a behavior or attitude. I find it difficult to respond to comments like "Just be more confident" or "Don't worry about it". We know that our ASD issues are complex and not very apparent to others. Even when speaking to professionals about ASD, they know the vocabulary and the behavioral effect, but they don't experience the complexity of feelings and neurological routes that govern the effect. This is our own personal stuff.
There have been times in my life when I have become very impatient and I have voiced my dissatisfaction. I now understand where it all comes from and have taken steps to become more patient by anticipating problematic situations and bringing along my diversion toys - namely a pen and an intense crossword puzzle page. I can't avoid the impatience, but I can be less bothered by it if I divert my attention to one of my favorite hyper-focus activities. This is just a coping mechanism. The real monster is the impatience. Unreasonable waiting times can bother anybody, but they can easily trigger a form of meltdown with us very easily. I have to live with it, so I have to find my own personal solution for it. We can be very picky about certain things, and the rest of the world laughs at what appears to be a "quirk" or "eccentricity". We know what creates our quirks because we know we need them to remain as normal and organized as possible. We deal with difficulties in concentrating from time to time and not all of us know how to bring ourselves into focus.
I recall a post from many months back about a guy who couldn't study because of the chair he had to sit in. That sounds ridiculous to most people, but I can relate to it. I've experienced the same issue. We don't know how the chair interrupts our concentration, but it does. This appears to be unnecessary fussiness to most people. We are very susceptible to environmental stimuli - for better or worse. This is why we are in the category of special needs. We try our best to manage our stability, and we can only do it well if we are aware of the annoyances and conditions that throw us off. These factors are not identical with all people on the spectrum, so explaining them to NT people just sounds like fussy trivial quirks.
I am reminded of a video I saw online about a young boy's reaction when his parents surprised him with a trip to Disneyland. Instead of being dropped off at school as usual, his parents chose to let him skip school and have a free, fun day. He wasn't told about it until he got into the car. The film was captured on a dash cam aimed at the car's interior, focusing on the boy. When the boy heard the news about going to Disneyland, he started to cry and complain. He was clearly very upset. The film clip is supposed to be funny, but I saw something very different. I believe this boy is on the spectrum. He needed to know about the diversion from school to Disneyland because the switch in agenda was overwhelming for him. Most kids would have been excited to skip school and head to Disneyland instead, but the boy needed to know the itinerary of his day to maintain his balance. He was mentally prepared for school, but not mentally prepared for Disneyland. NTs can't understand what is means for a person on the spectrum to be mentally prepared for events, schedules, and activities. It is a complex process that only the person with ASD can understand or manage. It's very specific to that person. If you don't have this need yourself, it's near impossible to understand that it even exists. Recognizing it is step one, respecting it is step two. The world is unaware of these kinds of needs. They aren't visible needs and they are not what most people experience.
It all goes back to the fact that ASD is neurological. Certain light switches govern certain fixtures. Somebody else wired the house and this is what we have to live with. Sometimes there is only a 40 watt bulb, and other times the bulbs are as bright at Yankee Stadium. This is what we have to work with. It's very difficult to explain ASD because we have to use clinical terms and concepts to describe our condition. The more meaningful explanations are deeper, emotional reactions to our experiences and capabilities. That's really tough to do. And, it's always the negative side of things that get the attention. I suppose that those who want to understand ASD are more focused on why people on the spectrum are not like everyone else, but they have no interest in the overall condition. They are focused only on those elements that make us odd or less likely to behave like others. That's only a small part of a much bigger issue that we have to live with and manage without any visible signs of struggle.
