Vancouver’s West End is well-known for its inclusive atmosphere anytime of the year, but especially during the summer months when the 2SLGBTQAI+ (Two Spirit, Lesbian, Gay, Bisexual, Trans, Queer, Asexual/Aromantic, Intersex, and Questioning) community celebrates Pride.
While the annual Pride Parade and street parties are favorite events of the year for many people, the festivities can be overwhelming for neighbours who identify as autistic. This is problematic as neurodiverse folks are twice as likely to identify as 2SLGBTQAI+ than their neurotypical peers, yet it can be difficult to find comfortable spaces to connect and celebrate.
Making space for marginalized communities is what Pride has always been about. This year Gordon Neighbouhood House partnered with Anna Jackson to host a Sensory-Friendly Pride event. We spoke to Anna about the importance of Pride events for queer autistic and neurdiverse folks.
Q. Let’s talk about language. The recent trend has been ‘person first’ language, like “people with disabilities” or “people with autism”. The community has been challenging that recently, saying ‘autistic people’ or ‘disabled people’ directly. Why is that?
Anna Jackson: Great question. Indeed, in the autistic community the vast majority of people use identity-first language, as in “I am autistic”. However, there are people who prefer person-first language. So, even though using identity first language is a fairly safe bet among autistic people, it is worth checking with each person individually. As for why identity-first language is on the rise: 1) we don’t think of autism as a disease or a disorder, it is just a different way of being in the world; and 2) like for example being gay or Canadian, being autistic is an identity which can’t be separated from our experiences.
Q. There’s a lot of misconceptions out there about autism. Much of it stems from a pretty problematic history involving Nazis, conversion therapy, and more. What can you tell us about the history of assimilating autistic people?
Anna Jackson: Oh, I can talk about all of those things for hours! But, in a nutshell, Asperger (the person Asperger’s syndrome was named after) was a Nazi collaborator who sent children to be murdered. For that reason, a lot of us autistics who previously identified as Aspies, no longer do so. Moreover, the most widely used therapy for autistic people, called Applied Behavioural Analysis or ABA was created by Ivar Lovaas at UCLA. At the same time as Lovaas was developing ABA he was also working with researchers working on the “Feminine Boy Project”, which developed gay and trans-conversion therapy. Lovaas, did not think we autistics are even really people. He once said in an interview:
“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person.”
So, the autism industry has very disturbing roots that unfortunately still define our everyday life as autistic people today. We don’t need to be cured or treated, what we need is to be accepted. If any of the readers want to read more about this topic, I recommend Jake Pyne’s (2020) paper “Building a Person: Legal and Clinical Personhood for Autistic and Trans Children in Ontario.”
Q. What’s stimming?
Anna Jackson: Stimming is repetitive action or movements, and autistics often stim. This may relieve or alleviate anxiety or other deal with discomfort in general, and autistics often report getting some comfort from stimming. Suppressing stimming can thus become very uncomfortable, and unnecessarily so. Stimming is often one of the behaviors that “therapy” attempts to “control” (as if it needs to be controlled). Discouraging stimming is harmful, as this is our way of self-regulation. Examples of stimming include: hand flapping, hair twirling, rocking, or sniffing a comforting smell.
Q. One concept we’ve been hearing about lately from the autistic community is ‘masking’ – what is masking?
Anna Jackson: Autistic masking occurs when an autistic person attempts to present so as to seem to be as neurotypical as possible to others. Certain behaviors that one might normally engage in for comfort, but which one has been told are off-putting to others, such as stimming, might be suppressed, while other behaviors that one might not normally engage in, such as full eye contact with others while talking, is consciously employed. It is, indeed, like putting on a mask so that one’s true self is hidden. Many autistics have expressed a perceived need to mask due to years of having been (loudly and repeatedly) told such things as “Look at me when you talk to me!”
Masking at some stage becomes an automatic social tool to make interacting with neurotypicals less stressful, but the party who is less stressed as a result of masking is the neurotypical person, not the autistic. For the autistic, masking can be utterly exhausting: suppressing stimming and making prolonged eye-contact can both be quite distressing to an autistic person. Putting on this mask while at the same time trying to navigate complex human relationships and interactions, when extended over long periods, can lead to major mental health issues. Continuous masking across years has been known to lead to more dire periods complete collapse or, as we call it – burnout.
Autistics do not mask in order to appear to be someone they are not for their own benefit: they do so because they have been conditioned by society and their upbringing to consider the comfort of others before their own identity and well-being. We are just as human as everyone else and like everyone else we want companionship and a sense of belonging and masking is one means of meeting these needs: if people are more comfortable with eye contact or “pleasant” small talk — many autistics will learn how to play this role in short bursts, even with the associated psychic discord this can trigger.
Q. We recently worked together to host a sensory-friendly Pride. Why are sensory-friendly Pride events so important for neurodivergent folks?
Anna Jackson: There are a lot of queer autistics out there. We are actually more likely to identify as LGBTQ2S+ than neurotypical people. So, Pride is important to so many of us. That said, Pride is usually very loud, colorful, and crowded. Most autistic people have sensory issues that make them sensitive to loud sounds, bright colors, smells, and the general busy atmosphere of a Pride parade. So, being in a sensory non-friendly environment for a prolonged time can cause a sensory over-load in an autistic person, which in turn can lead to a melt down and over negative consequences. Thus, sensory-friendly Pride is so important to us. We want to be out and proud like everyone else, we just need a chill environment to do so sometimes.
Q. How can I be a better ally to Autistic and neurodivergent folks?
Anna Jackson: As I mentioned before, as neurodivergent people we need acceptance. So, accepting us for who we are is the most important step towards true allyship. Moreover, listen to neurodiverse people. After all, we are the experts at being us. Finally, you can support autistic self-advocacy organizations like Autistics United Canada, instead of supporting organizations that speak for us.
Q. Where can I learn more?!
Anna Jackson: There are so many great resources out there that are made by neurodivergent people. But a good place to start would probably be Neuroclastic (https://neuroclastic.com/). It is a website that publishes articles by autistic creators discussing various issues in the community.