5 Things Most People Don’t Know About Autism
“Based on my observations here, and with what you’ve reported seeing at home and the reports from school, I’m giving your son a diagnosis of autism,” the neuropsychologist said, the look of sympathetic concern in her eyes one gets when tasked with being the bearer of bad news. I could sense her readiness to reassure me and explain that, while people often get scared about an autism diagnosis, there are a lot of misconceptions out there.
“Okay,” I said, nodding. “I was kind of expecting that.” She seemed a bit taken aback by my calm, accepting demeanor. I explained that a friend who was a child psychologist had mentioned it, my best friend’s son had autism, and my adopted brother was diagnosed with autism as an adult. After that, she seemed relieved. Clearly, I was familiar with autism. For me, it wasn’t the scary, foreign concept that it was for many parents.
Over the course of the next year, however, I came to realize that I knew next to nothing about autism. Even being more familiar with the disorder than much of the population, and being close with people on the spectrum, I understood shockingly little about autism spectrum disorder. Even now, after over a year of learning, I feel as if I have only a beginner’s level grasp of my son’s disorder. That’s why I write this article not as an expert, but as a parent and a student, in the midst of my learning journey. I hope that the information I share may be helpful for others beginning their journey of better understanding ASD.
1. Autism Is Not One Particular Thing
There is a popular quote from Dr. Stephen Shore that says, “When you meet one person with autism, you’ve met one person with autism.” You will hear the quote frequently in your learning, because autism is a highly individualized experience in a way that most diagnoses aren’t. A blind person may be completely blind, or they may be legally blind while still possessing some amount of their sight. No matter their level of visual impairment, though, their needs will fall into the same category.
Autism, on the other hand, carries with it a broader range of implications. While one child might be hypersensitive, feeling every touch as painful and hearing every sound at earsplitting levels, another child might be hyposensitive, craving extreme sensory stimulation all the time. Yet another child may have a mix of sensory disorders, experiencing some sensory input in the extreme, and needing to seek out more sensory input in other areas.
All of this together means that an autism diagnosis doesn’t give you all the information about a person, but rather tells you where to start looking for the right information. Watch this cool video to see a simulation of what autism can feel like.
2. Autism Has Many Common Comorbidities
To add to the confusion that autism isn’t just one thing, there are many comorbidities (or co-existing conditions) that are often seen with autism. 50 to 70% of people with autism are also diagnosed with ADHD, 10 to 30% have epilepsy, and 80% have sleep disorders, to name just a few. Some people may assume that everyone with autism is smart, based off movies like Rain Man that showcase the higher instances of savantism in individuals with autism. Others may assume that everyone with autism has lower intelligence, due to the higher instances of learning disabilities suffered by those with autism.
Despite the higher likelihood of many other conditions occurring with autism, they are their own distinct diagnoses and will not apply to every person with ASD. As I said earlier, when you meet one person with autism, you’ve met one person with autism.
3. An Autism Diagnosis Doesn’t Tell You a Person’s IQ
As mentioned above, autism indicates neither genius nor low intelligence. The IQs of individuals with autism vary, as they do with all other demographics. A person with autism may end up with a high-level job in Silicon Valley or may need to be alternatively assessed in order to graduate high school. The key to helping any person with autism reach their own individual potential is to identify and provide whatever particular supports they need.
4. Autism Can Affect Functional Communication in Different Ways
Some individuals with autism are “verbal” while others are “non-verbal.” However, being able to speak doesn’t always amount to the ability to effectively communicate, and being unable to speak doesn’t necessarily render a person unable to communicate. Visual aids, sign language, and augmentative communication technology can be used to help some nonverbal persons communicate. On the flip side, children who can verbalize may still have difficulty understanding the meaning of things or knowing how to express themselves.
5. Stimming Is a Normal Coping Mechanism
Try to recall a time you experienced extreme discomfort, such as chicken pox or the flu. Now imagine feeling that pain and discomfort every day, caused by things as simple as wearing clothes or the sound of typing. Just as you might have felt a desperate need to scratch your chicken pox, someone with a sensory disorder will often feel the need to “scratch the itch” caused by sensory input. Stimming is engaging in repetitive behaviors (such as flapping hands or arms, moaning, or yelling) that help alleviate the discomfort.
When stimming happens, we have an opportunity to notice what might be causing the discomfort, in case it can be eliminated or avoided. If the cause cannot be eliminated, and the stimming is problematic, you can try to help the person find other coping mechanisms. While flapping or yelling may be one way a person alleviates their symptoms, a tight hug or weighted vest may be equally effective.
This video does a good job of explaining stimming at 2:53 (but the whole thing is really worth a watch!).
I hope I’ve been able to teach you something new that gives you a deeper, richer understanding of autism. If there’s anything you would like to read about further, let me know in the comments!
