Courtney Johnson is a writer, public speaker, and Chemistry Ph.D Candidate on the autism spectrum. Courtney manages the website AutismAchiever.com, where her goal is to share information she has learned through her varied life experiences to help individuals on the spectrum reach their full potential. Last week Courtney shared some of her personal experiences growing up on the spectrum. This week she discusses her advocacy work and how parents can best advocate for their children.
I like your glass of water analogy about autism. Can you describe your experience with other people as viewing autism with a strictly positive or strictly negative lens?
My experience here is prone to selection-bias, but you can read on forums and social media about some people on the spectrum who perceive autism to be the next evolutionary stage of humanity due to our abilities such as intelligence, enhanced senses, and better decision-making (https://www.ncbi.nlm.nih.gov/labs/articles/28635378/).
What I see more commonly are individuals who post about how they “hate autism” or “hate being autistic,” and I think this is due to misattribution, because they often elaborate about the type of problems in their life: not being successful, lacking direction, not being able to get a girlfriend, difficulties being social, being bullied, etc., and they attribute these issues to autism. Sometimes it’s a matter of “hey your attitude is REALLY negative, and you would still have these problems even if you weren’t autistic,” and sometimes it’s a matter of “even if you were not autistic, your life would still be imperfect, you would still have other issues you would be dealing with.” So the point I wanted to make is “OK, maybe you have these problems, it doesn’t matter WHY you have them, instead lets focus on HOW to solve them and improve your quality of life,” which is why I said in my post that you can’t just ignore the good or the bad, you have to observe things as they are, without the filters we subconsciously apply to our perspectives.
What mistakes do neurotypical autism advocates make?
This is a tough question for me because I feel like there are many major issues with neurotypical autism advocacy, but they all ultimately stem from not including diverse autistic voices and opinions in their work. The new Netflix series Atypical was criticized for not including autistic voices in its creative process, instead a professor (who was not on the spectrum) was consulted. As a result, some have noted that the symptoms seem really overplayed and stereotypical. I have not seen the series yet, so I’ll reserve further judgment. The other major mistake is when organizations perpetuate autistic stereotypes and focus exclusively on young, often nonverbal kids who are incapable of growth. The anti-vaccine movement didn’t arise in a vacuum; it arose because people feared their child having autism more than dying of a preventable disease. We need to demystify autism by showing how it varies individually, and can’t be contained in a stereotype. We need to push higher-functioning individuals on the spectrum to stretch and grow.
What’s the most important thing parents can do for their children on the spectrum (both young and older)?
There are several crucially important things parents can do, and my mom is the ultimate role model for this question, so I’ll use her to explain what she did that was so right: she recognized early on that there was a problem, and despite autism being relatively unknown and doctors being stumped initially, she did not stop searching until she found the answers, and then she did something about them by taking me to ST, OT and PT. She was my biggest advocate for when I was mistreated by caregivers and bullied. She would demand new caregivers, and argue with the principal not to accept being bullied as a part of childhood, and, when that failed, she moved so I could go to a different school. She always supported me and accepted me for who I was; she always told me that “normal” wasn’t a thing, so I shouldn’t feel bad for not being normal. One thing she didn’t know to do that’s important for older kids is to get them to strive to achieve more. If they are struggling with a subject, encourage them to practice more instead of allowing them to feel like they are inherently bad at a subject. Regularly encourage them to step outside their comfort zone to try new things.