Quincy Hansen is a high school student and Autistic advocate from Denver, Colorado. Quincy has been formally diagnosed with Autism Spectrum Disorder and General Anxiety Disorder, and also has some fine motor skill impairments resulting in Dysgraphia-like symptoms. Quincy has found that writing offers a good outlet for communicating ideas that do not easily come verbally and blogs his experiences at Speaking of Autism…. This week he shared some of the positive and negative experiences he’s had in school, autism acceptance tips, and the importance of isolating autism’s co-occurring conditions.
How are autistic students supported or included in your school (or how are they mistreated, if that is the case)? In other words, to what degree has autism acceptance permeated the culture?
I am currently attending a small private Christian high school. I’ve had a long history of having overall very bad experiences with school, but the high school I’m currently at has been the one exception to this. My learning team has been great at recognizing the supports I need and getting my necessary accommodations. For the first time I feel like I can actually participate fully in school.
I like the fact that most of my teachers have the understanding that I need to do things differently sometimes, even if they don’t fully “get” why that might be. Ultimately there’s just a greater atmosphere of flexibility, where no one really cares that much if I don’t eat in the lunch room, leave slightly earlier to avoid the crowded hallway, or occasionally get out of my seat, as these things really are quite trivial. I’ve had some trouble and bad run-ins with a few teachers, yes, and I do still struggle a lot with school, but overall it’s been very positive. Because my school is so small, I’m one of maybe two or three autistic kids in the whole school, so I don’t feel like I have a great sample size as to how broad autism inclusion and acceptance is as a whole. For me, however, it’s been the one overall good experience in a long line of very bad school experiences, as autism acceptance and inclusion does not seem to be standard in schools as a whole.
Have you ever had trouble in school with teachers or peers who misunderstand autism? What effects does this have? What could have been done differently?
I’ve had a very rough time with school in the past. I’ve been bullied by students and even by teachers and experienced all sorts of trouble in a school environment. Generally, the biggest problem I’ve had is that teachers, counselors, and the like seem to be stuck in a paradigm reducing autism down to a list of “behaviors” that need to be changed or eradicated, and that they focus so much on how they can get the autistic person to change rather than stopping and asking why said autistic person might be doing the things they’re doing and considering what changes can be made to better support that person.
It seemed like people couldn’t understand that I feel differently, sense differently, think differently, and perceive differently. I remember being so frustrated that no one would listen to (or I could not communicate well enough) the fact that I honestly could not help but do many of the things I did. When there is a person in a wheelchair, we don’t insist that they get up and walk, we build ramps and elevators so they can still access the building. Yet, with invisible disabilities like autism, people often cannot fathom that there are things we honestly cannot do, or they misinterpret why we do things.
When I bolted out of the classroom because it was too overwhelming, I was called impulsive. When I got out of my seat to pace, it was said I was being disrespectful. When I could not follow directions precisely as they were told because I have trouble processing, remembering, and executing multi-step verbal instructions, I was called defiant. When I stood too close to someone because I don’t process “personal space” very well, it was speculated that I was being a bully and trying to intimidate the other classmate. None of this was true of course, and if anyone had actually taken the time to ask why these things were occurring rather than making assumptions or focusing entirely on changing me, it could have been realized that I couldn’t change any more than a blind person can see, and so instead the environment I was in and the perspectives of others needed to change.
But instead, I didn’t get access to the supports I needed, and I was punished for reasons I didn’t understand (I distinctly remember being sent to the office any time it looked like I might have a meltdown, where I would be forced to stay in a small room with nothing but a desk for the rest of the day). I was essentially non-functional at school by the end of my seventh grade year, resulting in me being taken out of school as an emergency intervention. I have also been denied admission to a charter school because of my autism diagnosis and the principal not wanting to have to “deal with” me, but I suppose that’s a story for another day.
Do you find the typical school day stressful? If so, what do you do to unwind at home? If not, when/where do you experience the most anxiety, and how do you cope?
Yes, I find a typical school day to be very highly stressful, but I usually can manage to make it through the day. What I do when I get home depends on the day. Sometimes, I’ve used up all my resources and I’m incredibly tired, so I just go home and take a long nap. Other times my sensory system feels out of regulation, so I run around, or bounce on an exercise ball, or roll on the floor, or any number of other things to get my brain re-focused and soothe my anxiety.
I’ve heard it’s very common for autistic people who otherwise have sensitivities to noise to crave loud music as a way to re-regulate, and seeing as I’m one of these autistic people, I find listening to Metallica, my favorite band, good for this purpose. Sometimes it’s just nice to come home and watch a TV show or play video games (of which I particularly enjoy Minecraft and Civilization V). I also play the bass guitar, and playing music can take my mind off stressful things. Though, video games, TV, and playing music seem to be common ways of unwinding for a lot of people, not just autistic people!
You’ve written about the conflating of co-occurring conditions with autism. Beyond the potential for misdiagnosing a medical condition that might need addressing, why do you think it is so important for people to isolate each condition rather than attributing them to autism?
We need to make sure that we avoid diagnostic overshadowing (or conflation, as I had previously called it) so that everyone’s support needs are adequately met. For example, I’m also diagnosed with an anxiety disorder, but if someone were to simply attribute my anxiety to autism (“you’re just anxious because you’re autistic”), I may not be getting the appropriate help I need to manage anxiety, as it requires separate supports from other things that could be consider “autism.”
Co-occurring conditions need to be treated, recognized, and diagnosed as separate conditions so that they can be appropriately addressed. An autistic person with co-occurring conditions may have additional needs that must be met, so saying, for example, “autism and a seizure disorder,” rather than (inaccurately) lumping in seizures with autism allows additional potential support needs to be accurately determined because it is made clear that they have these additional support requirements related to their seizure disorder.
There’s also the fact that I consider autism to be a central part of me, as it shapes the very way I perceive and understand the world, and it is not something I want to change. Anxiety, on the other hand– anxiety is something that I do not consider to be part of my integral neurology like autism is, so it’s important that the two are not conflated as part of the same thing.
The Light It Up Red campaign is relatively new. When did you first become passionate about this campaign? Is it common in your community to “light it up red?” Or is your community dominated by blue?
This year is the third time I “walked in red” on April 2nd, as two years ago is around the time I began to become passionate about embracing my autistic identity. You mentioned “light it up red,” but this is just one of many proposed alternatives to the “light it up blue” campaign, such as Walk in Red, Red Instead, Light it up Gold, Light it up Red, and if you’re super cynical, Tone it Down Taupe. All of these are intended to replace the usual paradigm of alarmism and “bewareness” typically associated with light it up blue with one of love and acceptance.
I haven’t seen any of these much outside of neurodiversity circles, and it seems like my community, and the world in general, is saturated in blue during April. I have, however, been seeing more and more businesses swapping blue bulbs for gold ones, and more and more places having “wear red” days each year. Hopefully someday these campaigns will promote a larger culture of autism acceptance.
Name some practical changes neurotypical parents, teachers, and/or peers could make that would improve the lives of individuals on the spectrum.
The answer to this question really depends on the person and on the situation, so I apologize again for giving a vague answer. First, people need to listen to and seriously consider the voices of autistic people. For some reason, autistic people are so often ignored in conversations about autism, even though we’re the ones who can give the best insight. Parents, listen to what your autistic children are telling you (either through speech, behavior, or other means). Consider this before jumping to any conclusions or assumptions. The same goes for teachers with their autistic students. I stress again that this includes not only what they say with their mouths (or AAC, or whatever) and goes also towards what they’re saying by how they act and react. Everybody communicates, and all behavior is communication. And if you want to learn more about autism, go talk to some autistic people! We might be your best resource, yet we are so often ignored.
The next important thing for any person to remember when it comes to autism is to be open minded and flexible. We may have trouble with things other people don’t and may need to do things a different way. We may do things that you find entirely baffling. But I assure you we have reasons for the things that we do, and a little bit of flexibility and open-mindedness can go a long way. It’s OK if we need to do something differently, and we should be allowed to do so. There’s no need to sound an alarm when there’s something we can’t do like you can. Simply work and plan around this challenge. There’s no reason to get upset if we need to stim or wear ear defenders in public, or whatever else, and we should be allowed to do these things without shame or stigma. Just a little bit of open-mindedness and flexibility from the neurotypical population can go a long way towards making the world more accessible for us.
You can reach Quincy on his blog Speaking of Autism… or on his Facebook Page Speaking of Autism.
Mary