In my advocacy and museum work, I often feel like I need to walk a fine line between masking my autistic traits or low-functioning days/weeks and communicating the reality of my experience as an autistic museum professional.
In many interactions with colleagues at conferences and online, I’ve been met with confusion or disbelief when I tell someone that I am on the autism spectrum and have ADHD, that I’m part of an audience they’re trying to program for or are explaining how their museum has successfully implemented programming for autistic visitors. When that happens, I feel frustrated – I wonder if you understand autism as a spectrum. I wonder if you still see autistic individuals as singularly “low-” or “high-functioning,” or if you understand that for many autistic people, functioning fluctuates, and that autism contains a multitude of spectrums within each one of us. I wonder if you’re working with autistic people because it makes your museum look good, or because it looks nice on grant applications. I wonder if your community outreach was limited to families with autistic children, or if you’ve sought additional input from autistic adults. I wonder if you’ve even considered that autistic adults, especially women and trans or gender non-conforming autistic people exist – a problem not limited to museums, but which also permeates the structure of educational and medical systems that leaves neurodivergent adults with few resources and community supports. I wonder if you could picture me working at your museum or attending its sensory-friendly hours.
And I also wonder if colleagues can picture me without my mask. The trouble is that I also don’t necessarily want that – because I don’t think the museum field is ready to picture it in a way that doesn’t diminish their perception of the work that I can do when my access needs are met and I’m functioning at a high level. (Often, autistic people who are perceived as “high-functioning” don’t get the support they need, while those perceived as “low-functioning” are underestimated.) The more open I am, the more I hope people can learn from my experiences; on the other hand, openness makes me more vulnerable to bias and discrimination.
I try to work with people who I trust – those who are committed to equity work and walk the talk, who create accessible working environments, and who amplify marginalized voices – and that alleviates much of my anxiety. I truly think the tide is changing, and I’m so grateful for my small network of colleagues and friends who don’t treat me any differently than they do others, while still giving me grace in social interactions and keep my access needs in mind when we are together. When I am around these people, I don’t feel the need to mask quite as much – but still, they won’t see me have shutdowns or sensory overloads. They won’t hear from me at all when my ability to function is limited. That’s my choice; I typically see these details as private, and I deal with my access needs as best as I can until I am able to interact again.
But, since I never really talk about those times publicly or with colleagues, it makes me wonder if that makes people question whether I am “not autistic, just quirky.” Or, I wonder if it’s only because I never talk about those moments or bottle up my overloads until the webcam is off that I have the privilege of working in museums. I know my diagnosis is my business, what matters most is how I see myself, etc., but what it boils down to in the back of my mind is the question of “Would this field have room for me if I had an autistic shutdown at work?”
The weight of wondering if I’m only accepted because I often mask autistic traits is, at times, crushing. Right now, my situation allows for a lot of accommodation and privacy. I work from home, part-time, and on a contract basis; so, I absolutely have the ability to keep all of that private, and the ability to meet my access needs at home so that I can work, at least most of the time. I alternately yearn for and fear a time in my future when I am able to work at a museum full-time and in-person, because masking my autistic traits for 40 hours a week has led to incredible burnout and mental health problems in the past.
Still, that question – is there really room for autistic people in museum workplaces, even if they are not masking their autistic traits? – is important to me because I so often advocate for autistic employment in museums. I primarily aim this point at museum professionals, hoping that making museum workplaces more accessible will increase neurodiversity among museum staff. I think, for those who want/are able to work, museums can be awesome places for autistic workers, and museums can benefit greatly from our contributions. But, knowing what I know about the museum field and workplace inaccessibility, can I – in good faith – encourage my autistic peers to apply to museum jobs?
And quickly, on that note, you probably do have a neurodivergent or invisibly disabled colleague on staff who hasn’t disclosed this information, and perhaps shouldn’t have to, because that opens us to bias and discrimination at work; a universal design approach to making your workplace accessible is going to impact these folks and openly neurodivergent and disabled employees. (I don’t have the energy right now to do a post on those accommodations, but maybe soon/someday.)
Most of the time, I’m able to use all my experiences and tools to accommodate for myself and keep a balance between work, family/friends, chores, and hobbies. I try to prioritize my self-care and commitments I’ve made for work or socially. I plan around things that I know lower my functioning. For instance, I won’t schedule any meetings on the same day I have a dentist appointment, because the last time I went for a cleaning, I was so overloaded from the anxiety and sensory hell that I slept for six hours after getting home. But sometimes it’s all just too much, even though there’s no more or less expected of me than the week before.
So, here’s the riskier(?) bit. The truth is that last week, I wasn’t able to function at my highest capacity. Work burned me out more quickly and more intensely than it does my non-disabled peers. Social aspects of work (emailing, calls, and especially anything involving people-wrangling) take more energy for me to work up to doing and winding down from after. My energy is finite – if I spend it here, there’s not as much left for self-care, talking with friends, or caring for my home environment. Of course this is true for many people (don’t even start with anything remotely related to “we’re all a little autistic” with me, because I absolutely don’t have the energy for it), but my functioning ceiling is lower than most of my colleagues.
I hit my limits sooner, and when I try to force my way past them, my mask & functioning crumble. I lose the ability to read and process information, think through problems, and communicate with other people. My sensory issues explode – I can’t look at screens anymore, I can’t even think about the pain of being wet from a shower or remember and enact the steps in my skincare routine, or stomach the amount of food I need to eat in a day, or deal with the high-pitched cries my cat makes when begging for second dinner (?!? you’ve already eaten! twice!). I stim more and speak differently, and probably do look a little more like the stereotype you’ve got in your mind of what an autistic person looks like. With my executive functioning shot, chores, texts, and projects start piling up, and my anxiety grows in tandem. I still worry sometimes that maybe I’m just being lazy, and if I tried a little harder then everything would be fine, even though I know that’s not true. I need hours to myself to recharge each evening after a day like this – not including sleep, which now has a monkey wrench jammed into it – so that I can execute tasks for just one or two hours the next day, until I hit a stretch of days when I have nothing that needs to be done, and I can recover for 2-3 days. Then, I can restart my routine, smooth things out, and function at my highest capacity, at work and at home.
I love the work I do and I am proud of it; I know that I can say I did a good job on what I needed to do last week, and I did the best I could to manage my fluctuating abilities and meet my access needs at home. When I’m at my best, I’m highly detail-oriented, able to solve complex problems, use my excellent pattern-recognition skills to pull together and respond to trends in the field, and communicate my ideas fluently. But for the past week, I’ve wondered what people picture when they think of what the behind-the-scenes work of autistic employment looks like – not because I want sympathy or less interesting work or fewer opportunities, but because I worry that if you can’t picture it, or that you can and are too uncomfortable with it, you won’t want autistic people to bring their full selves to work at your museum, or won’t want to work with us at all.
Anyway, I spent the weekend recharging with activities I enjoy and lots of downtime at home. Lots of Animal Crossing and crafting with pressed flowers & four leaf clovers. I spent today (Monday!) preparing for the week ahead so that it goes as smoothly as possible. Basically, I’m back online.
Speaking of the week ahead, I’m excited to join the Chicago Cultural Accessibility Consortium as a panelist for “Engaging Individuals with Intellectual/Developmental Disabilities in Virtual Programs” on Thursday 10/29/20. This event is free/$5 donation and will have sign interpreters and real-time captioning.
I hope this post has generated some understanding and interest about autistic experiences in the museum workplace. I still feel a little anxious about sending those risky bits into cyberspace … so, please, be graceful and generous with your reading of it.