Christine M. Condo is an Autism writer, consultant, and spokesperson. She blogs about her autistic experience and is pursuing a master’s degree in technical communication at George Mason University. This week she discussed the fatigue of masking and the importance of accommodations and being open to different styles of communication.
At what age were you diagnosed? What made you decide to pursue a diagnosis?
I returned to school in my late thirties to pursue a career in animal research. My second undergraduate experience went well, but things fell apart in grad school. I was falling behind the other students in bench work and failing all my classes. I spectacularly failed my first exam. When I went to see the professor, he told me “I didn’t understand your exam. You didn’t answer the questions I asked.” By the end of the semester, I had to withdraw. It was at that time that I realized that the way I processed information was vastly different from that of my peers and sought a diagnosis for it. I was tested in December 2015, at the age of 42, and results indicated autism level I, previously referred to as Asperger’s.
What accommodations or support have you received that you found helpful?
Very little, unfortunately. I have despaired of getting accommodations in the workplace; I was never able to explain or get what I needed. I am unable to work outside the home.
The accommodations that benefit me the most are those that minimize the amount of time I have to spend on interpersonal interaction and/or out in public. Both of these activities are a significant drain on my energy and cannot be maintained for very long; perhaps an hour and a half on the outside, often quite a bit less. Trying to force past this limitation puts my mental and physical health at risk, a consequence that has recurred countless times, and that I am only belatedly learning to accept. Sensory sensitivity in autistics is also on a spectrum, from challenging to immobilizing. I am closer to the immobilizing end.
My close friends are wonderfully understanding about why I can’t meet them in certain places and why I don’t attend large parties. My professors know that I sometimes have to leave class early or miss it altogether because I’m too used up, and are also very accommodating.
The most important accommodations, though, are those I make for myself. Since autistics are not as self-aware as others, I’ve had to learn other ways to manage my energy expenditures. This involves not spending time in challenging sensory environments and timing social activity to make sure I leave before I am completely depleted instead of going until I “feel” used up, by which time it’s far too late. The hardest thing was learning to advocate for myself even around people who don’t know about my autism. It’s a level of self-care I wasn’t sure I was permitted to ask for before. Once I started doing it, it was a major turning point in my ability to handle stress and develop workarounds for when I couldn’t.
How have other neurotypicals behaved in ways they thought were helpful, but weren’t?
I have chronic pain and visit the doctor every month or so. The first time I told them I was autistic and needed to be away from the TV in the waiting area, they put me in a quiet room and dimmed the lights. I appreciated the thought, but one of the ways I manage my anxiety is by coloring, and the dim lights made it hard to see! Since then, I’ve learned to be more explicit. Not every autistic has the same sensory sensitivities and triggers. It’s always best to ask.
In your recent Washington Post article, you say that when you explain to NTs the exhaustion of trying to act NT, “I am often encouraged to just ‘be myself.’…I have tried being myself, plenty of times, and the universally negative feedback I received from early childhood through college taught me that that self is not welcome in a neurotypical world.” When do you feel like you can be yourself? How are those around you behaving that make you feel comfortable being yourself?
Wow, such a great question. The problem with being myself is that myself doesn’t read as autistic. It reads as callous, self-centered, and even anti-social. The only place where I feel like I can let down my guard is in my own home when I’m alone. There are three people in my life I don’t have to perform for, those being my significant other, my sister, and my best friend. These people have seen me when my guard is down and love me anyway, and never make me feel like my natural behavior is mean or rude. I want to note, though, that even with them, if I’m not at home, I still have to keep my NT face on because of other people around, like their roommates or kids.
You’ve been told before that people didn’t want to hang out with you in college because you were “too mean” or work with you at one of your first long-term jobs because of your “attitude.” You said both of these came as great shocks to you. Do you have any advice for self-advocates who might experience similar rejection? How can people self-advocate in ways that might prevent this? On the other hand, what responsibility do NTs have to prevent the frequency of these situations?
Since the article was published, I’ve heard so many stories from other autistics about having these exact same experiences, and it just breaks my heart. In my case, I wasn’t until I was in my thirties that I realized that this might be due to autism and not a personal failing. Knowing this, though, doesn’t make it hurt any less.
I have yet to find a way to explain this phenomenon to people who aren’t familiar with “high-functioning” (a misnomer if ever there was one) autism. There’s not just an understanding gap, there’s a whole language gap. As of now, we still don’t even have lay terms to explain these things. Phrases like “social communication” and “subtextual information” don’t exactly roll off the tongue.
These situations can also perpetuate the stereotype that autistic people don’t feel emotions like NTs do, and nothing could be further from the truth. Autistics are very emotional. The difference is that we communicate differently. We are literalists and treat words as such. We have to teach ourselves to fake the way neurotypicals use speech, and are more or less successful depending on whether we can rely on intellectual knowledge or have to improvise. We also have to expend extra mental energy to do this, and if we are stressed are depleted, these put-ons are the first to go.
When we stop speaking like NTs, we sound like robots. Requests come off as orders. Direct responses are taken as rude. Remarks intended to improve a given situation are considered personal affronts. Until NTs learn to distinguish between the two levels of communication, words and subtext, and to understand that autistics are literal, not mean, these problems will persist. It may be a long time before any real progress is made in this realm.
In your recent article, you suggest that a willingness to learn more about autism and how to support individuals on the spectrum is a good approach for NTs. In your experience, how often do you see this attitude among NTs?
I am always surprised by how willing most people are to work with me, especially younger adults. I’m afraid I’m a bit of an ageist in this respect; I probably wouldn’t ask someone my parents’ age to accommodate me unless it was a good friend. I’ve also found that people with a family member or close friend on the spectrum are already invested, and have educated themselves on how to be supportive. They are more likely to cut the autistic some slack when social expectations aren’t met, and are more proactive about making sure the autistic’s sensory environment is as comfortable as possible. Last weekend my boyfriend took me to a diner and could tell immediately that the lack of soundproofing and noise from the kitchen was not going to work for me. He promptly suggested we go somewhere else, and I eagerly accepted his offer.
Now if I could just get people to mute TVs in waiting rooms, dial back the air fresheners, and not use their phones on speaker in public, we’d be getting somewhere…
What are some ways parents and caregivers can support individuals on the spectrum to develop good self-confidence and a positive autistic identity?
Another great question! My sainted parents, who had no idea what they were dealing with, nonetheless always let me know, through words and actions, that there was nothing wrong with me and that they loved me unconditionally. This was, and still is, absolutely critical for my self-esteem. A lot of feedback we get from peers is that we are broken or lacking in essential human qualities, and to have the support of the family while this is going on is an important buffer. My family was my [only] safe space and to this day, I am grateful and consider myself blessed.
It is so important that we cultivate the belief that there is absolutely nothing wrong with us. A friend of mine once told me “God doesn’t make junk” and I have carried that in my heart ever since. We are not broken. We are built differently. Our differences are not flaws. They make us special and uniquely useful in ways that NTs aren’t. We are important and our experiences matter. We are as deserving of love and tolerance as anyone else.
Sarah