Experiencing a life-changing event is one of the reasons people start advocating. For autistic people, advocating can mean stepping so far out of their comfort zone socially, it feels like they’ve lost sight of it. As for myself, I went from feeling invisible most of my childhood, to talking in front of my very familiar students in small classrooms, to speaking to strangers at national conferences. My life-changing event was my husband of 29.8 years dying by suicide. Suddenly, I had important information about crisis supports and suicide prevention for autistic people to share.
So, I started advocating to professionals supporting autistic people in crisis. What I found was that advocating has either been a great mountain-top experience or a challenging, cactus-like prickly one. I love it when I can help professionals understand how to support autistic people in crisis. It’s a great feeling of satisfaction and happiness. Unfortunately, I also found myself in situations where I was being unintentionally harmed through my advocacy efforts.
Unintentional is the key word here because the people I advocate to are helping professionals. These are the people who need the important information I have acquired through lived experience. The people who, when they come to truly understand autism, have the potential to be important culturally competent allies for autistic people. Allies who can save lives.
Harm is what happens when the professionals I’m advocating to forget, or perhaps do not understand that I’m autistic too, which means what I’m teaching pertains to me as well. So, for instance in advocating for crisis supports, I might teach that autistic people who are triggered may not be able to communicate, may have a regression of skills, or have high anxiety. Then, I may experience professionals who question my competence in being able to advocate because I struggle to answer a question or to talk at all in a moment of high anxiety.
I may also explain how difficult change is for autistic people, how sensory issues can be debilitating, or how anxiety can invoke a slower processing speed. Then, to my surprise, I experience and endure last minute changes to a presentation, or participants are not told to turn their cameras off, or there’s an expectation, because I’m the presenter, that I’m in charge of reading the chat, keeping track of time, and answering questions all at once. These incidents are potentially detrimental to my ability to advocate in the moment, invalidating of my autistic self, and hinders the professional relationships I’m trying to build.
Please continue to keep in mind – this is all unintentional. I believe the expectations resulting in the unintentional harm explained above are rooted in the professionals’ attempt to presume competence out of respect. So, how can presumed competence and respect result in harm?
The competence and respect are from a different culture.
The culture I belong to, the autism culture, has a different way of showing competence and respect, of which, non-autistic people might feel unintentionally harmed if I were to show them the kind of competence and respect I understand.
Competence for autistic people leaves room for regulating emotions, triggers, and sensory stimulation. I experienced this first-hand at an autistic-led conference I attended. It was the most comfortable, safe, accessible conference I’ve ever been to. The autistic people I worked with that day allowed each other space to be ok and to not be ok. There was presumed competence whether someone had to withdraw, pace, cry, leave, or regulate in any way. As soon as the regulation was restored, the autistic person was back to presenting, covering an autistic person who needed a moment, or just whatever needed to be done. I had to use a quiet space to regulate a couple of times that day, but never felt like anyone thought less of me because of it. I knew when I was regulated, I would resume my duties alongside my autistic colleagues with no questions asked. Regulating, withdrawing, and sensory challenges were as much a part of the conference as presenting, networking, and advocating.
Respect for each other came from the understanding that each autistic person could and would take care of themselves in the way they needed to – or ask for assistance. There was no judgment or expectations of having to always be ok in order to present. I was asked to take over for someone who needed space and time to regulate, right after taking the time to regulate myself. It was so freeing to be able to take care of myself the way I needed to without worry about how others might react. These happenings assisted my ability to advocate in the moment, validated my autistic self, and strengthened the professional relationships I was trying to build.
Advocating for the advocate would not be necessary if professionals genuinely understood autistic advocates are autistic people. People who think, communicate, and experience the world differently than non-autistic people. They are advocating for themselves as much as they are for the autism community. Everything they advocate for pertains to them as well. It would work out perfectly, if, when professionals learn something about autistic people from autistic advocates – they practice what they’ve learned as they work with those autistic advocates. It may require them to move out of their comfort zone, exactly where autistic advocates usually reside, but, only for a while, then perhaps we can all feel proficient enough to work together within new, culturally competent comfort zones.
Lisa is owner of Lisa Morgan Consulting LLC, where she advocates for crisis supports and suicide prevention for autistic people. Her website, www.autismcrisissupport.com, contains her books, articles, resources, and research. Lisa can be reached at firstname.lastname@example.org or through her website.