A few weeks ago, someone who had just learned about my blog through my temple came up to start a conversation with me. She wanted to learn more about me and my advocacy work. After talking for a few minutes, she commented that “I have it easy.” I was confused and asked for clarification, in which the response was “you know...glamorous Autism.” I was taken aback. Multiple emotions rushed through my head: anger, confusion, but also determination. I felt angry because this person has no idea what I go through on a daily basis and still had the guts to tell me that I had it “easy.” I was confused because I could not understand how someone could say something like this to me. Finally, I felt determined to keep writing and advocating because although there is an increase in understanding in this world, there is still so much more work to be done. I researched this idea of “glamorous Autism” and, to my surprise, multiple articles came up. This newer myth that I am now aware of needs to be squashed!
The Autism spectrum is diverse. Some individuals with Autism are nonverbal while some are high functioning savants. Each level of functioning within the Autism spectrum has its own set of unique difficulties. The difference between low functioning and high functioning is enormous and I realize that others have it much harder than I do. However, this does not mean that High Functioning Autism is “easy” or “glamorous”. High Functioning Autism has its own challenges that affect me on a daily basis. They include:
1. Difficulties with social interaction.
I once said in an earlier post, “My Social Life At School,” that being social has always been a challenge for me. I have taken the equivalent of multiple AP courses on social skills! Starting conversations, maintaining eye contact, reading social and body cues, recognizing tone of voice and sarcasm, and asking for someone’s phone number have been a few of the many skills that I have worked on in speech therapy. In addition, I also have difficulties when it comes to perspective taking. You may think of a particular situation one way, but I may think of the exact same situation in a completely opposite way! This is just because I view things in abnormal ways. About two weeks ago, during one of the staff meetings at the summer camp where I work, one of the assistant directors and I were conversing publically about a topic regarding the bus. I took the situation as he didn’t think that what I was saying was important. I texted one of my really good friends (who is also a counselor) and asked her what she thought. She explained to me how she viewed the situation; the assistant director thought that what I was saying was important, but as the meeting was running a little bit late, he was shortening everyone’s questions. Thank goodness for great friends that clarify!
2. Emotional dysregulation.
Emotional dysregulation (ED) is when an unexpected and socially inappropriate emotional response occurs. During what I call my “breaking point” at ages ten and eleven, I was having constant physical anger outbursts. This is one of the types of emotional dysregulation that can occur with individuals on the higher functioning end of the spectrum. One book titled “The Zones Of Regulation” by renowned speech-language pathologist Michelle Garcia Winner explains this topic very well! I try my very hardest to use positive coping methods when I experience negative feelings, but sometimes I have to get all of my feelings out. Whenever I need to do this I try to go somewhere private (usually my room). I may stay in my room anywhere between ten minutes and an hour and a half. Even though it’s getting better, the challenge is still there.
3. Sensory difficulties and overstimulation.
Many people on the spectrum have a wide variety of sensory difficulties. I have extreme sensory difficulties myself; these often cause anxiety, discomfort, and occasionally prohibit any social interactions that I might have. I have many different types of sensory difficulties which involve hearing, sight, and texture. The one that is the worst (in my opinion) is texture. I am a very picky eater because many different textures of foods bother me. In addition, I absolutely hate the feeling of water on clothes! I am okay when I go swimming in a bathing suit or when I take a shower, but otherwise the feeling of normal wet clothes on my skin is one of the worst feelings in the world. This is extremely difficult for me, especially when it rains or when something gets spilled on me.
4. Feelings of anxiety and depression.
For me, anxiety and depression is the worst part of having Autism. Because of how my brain is neurologically wired, I tend to experience these strong feelings more than neurotypical individuals. I’m not saying that neurotypical individuals cannot be depressed or anxious because they absolutely can be. Having said that, research has shown that individuals with Autism are more likely to experience these feelings. There are some days where I feel so depressed that I cannot help but sit in my room, under my covers, and cry. Sometimes, I get so anxious that I pace, perseverate, and get so worked up that I cannot move on from something until a situation is resolved. Anxiety and depression are real. If you have ever experienced deep anxiety or depression… is it “glamorous?” I’m not trying to say that all people with Autism have worse anxiety or depression, but it’s a constant struggle.
5. Being aware of everything around me.
Because I am high functioning, I am aware that I don’t have many friends (when other peers have a lot more), that others see me as “weird,” that I wasn’t invited to the party when everyone else was, etc. The biggest one, however, is that I am aware that I struggle with so many things that others don’t. This sense of awareness leads to low self esteem, depression, and anxiety. In a sense, it would be easier for me if I was completely clueless to all of this, but I’m not. If I was clueless, I wouldn’t have to deal with the constant reminder of how much I do struggle. I try to persevere through every single day. Some days are much easier than others while some days I feel like I want to give up. Giving up in the long run, however, is the last thing on my mind.
These five are a few of the various challenges that I face in my life. I know that many individuals with High Functioning Autism, as well as their families, already understand what I am talking about. Autism Spectrum Disorders, no matter what level, are neither “glamorous” nor “easy.” Having Autism is a daily, sometimes minute by minute struggle.
If you liked what you read, I ask that you please share this post! I want to get this ASD myth squashed and I need your help!