My Autism Is Neither 'Mild' Nor 'Glamorous'


lucy chapman
Lucy Clapham

Recently I’ve read several articles about autism in which the writer, who often has an autistic child of their own, criticizes people putting “higher functioning” autistic people in television shows. They use words like “mild,” “not real autism” and “glamorous.”

While I appreciate that my experience differs from a lot of people with autism, namely those who are nonverbal (I do not like functioning labels much), I find it quite upsetting that someone would dismiss my experience of autism in such a way. Allow me to give you some examples to show why my “high functioning” autism is not “glamorous.”

Anxiety

It is likely that most people on the autistic spectrum suffer from anxiety at some level. Mine is severe, and that is not just me overexaggerating. I can have as many as 20 panic attacks in a day, caused by anything from seeing a moth to a massive routine change. I’m scared to leave the house due to agoraphobia and have to be accompanied at all times as a result.

Behavior

My behavior can change quickly. Although I may seem calm, I’m probably just faking it. Just one trigger can change my acting stance into what I call the “real me,” and then my behavior is unpredictable (even for me!) and potentially even dangerous if not handled well by my support staff. Those of us with “high functioning” autism may be able to “fake it,” but usually only to some extent. It’s like the metaphor of the graceful swan paddling for dear life under the water, but you just see the calm.

Self-injury

This is not just reserved for one end of the spectrum; many autistic people experience this behavior. I’ve had to have wounds bound up after smashing my head into a wall repetitively. I used to suffer from rashes after I would burn myself on the carpet during a meltdown. As a teenager I often bit my arms and hands, sometimes until they bled.

Difficulty expressing myself

Although I talk… a lot… it’s rarely about what needs to be talked about, such as my feelings. I cannot tell you what feelings are going through my head because I cannot name them. As a result, a typical emotion can quickly become totally overwhelming to the point of a meltdown. If I’m feeling ill, I’m more likely to tell you to go away (in a much less polite way) than tell you I’m sick. I suffered from gastritis for well over a year before I was able to accurately tell anyone what the feeling was to pursue a diagnosis (and now treatment). Just because someone can talk does not mean they don’t have trouble communicating.

Auditory processing

Again, I can talk extremely well, which makes it confusing for people to understand that my comprehension is often extremely poor. While I can’t explain this scientifically (it’s probably a wiring thing), it’s extremely common in verbal autistic people. Not understanding most of what is said to you throughout the day can lead to yet more
frustration and more meltdowns.

Sensory processing

Some people with autism have sensory processing disorder (this can be diagnosed as a condition on its own without autism), and this affects the five main senses plus the vestibular system and proprioception. Everyone has this at a different level, so some may love loud noise, bright lights, strong fabrics, strong flavors/smells and vestibular activity (stimming), while others may hate all of the above (although may still stim but to keep the other senses out). Others, like myself, may have an extreme aversion to one or two senses but seek the others. Sensory input, whether too much or too little, can also trigger meltdowns.

Meltdowns and shut downs

When everything gets to be too much, I either have a meltdown or a shut down. In a shut down, I will attempt to block out everything to the point where I’m basically catatonic and unable to speak. In a meltdown, many of the behaviors I described will come out, along with uncontrollable screaming and/or wailing. Neither can be solved
quickly or easily, and the best option is to leave me alone while I feel this way (which is easier said than done at times) to avoid further input. I’ve also gone into such a severe “flight mode” that I’ve ran into traffic without any thought for my safety. (Fight-or-flight mode is what animals go into when they are frightened. Humans have mostly learned to control this.) I will suffer from a “hangover” for several days after the shut down or meltdown and may have to sleep it off.

So to conclude: I can talk, but I cannot communicate. I do have some spiked skills but not enough to get me a job or earn me a place among the 400(ish) people with savant syndrome in the world. While my autism may appear to be less “severe” on the outside, it is still hard to live every single day like this, knowing things may never change or get easier.

Please try not to get into the habit of comparing people on the spectrum. This just causes anger and tension. And finally, always remember that if you meet one person with autism, you have met one person with autism.

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