Thoughts about Autism Acceptance Month, communication, masking.

Firstly…

I didn’t mean to write for Autism Acceptance Month, but I could feel my anxiety coming on as the month approached. There’s a lot shared and written from non-Autistic perspectives, and a lot of it is couched in observations, and assumptions, not experience, and the problem with observation is that the observer has their own interpretations.

A lot is couched in talk of deficits, and a lot is based on misconceptions.

That being said, as someone who found out they were autistic later in life, I sometimes also feel some impostor syndrome about writing about this. Until the other day, I hadn’t said much at work about this. It kind of popped out, because others were talking, and I felt the need to contribute.

That being said… These ramblings are based on my own thoughts and experiences, and I only speak for myself here. There’s a saying “If you’ve met one autistic, you’ve met one autistic.”

About communication, and perceptions around it.

I guess, to start, it is worth explaining that I have what is termed “flat effect”. I don’t normally show what I’m feeling on my face, tone of voice, or in my mannerisms the way that I think I do. When I thought I was smiling, others see indifference, or a frown, perhaps even a brow furrowed in worry.

I realised that people often assume I’m upset, or sad. They often ask me what is wrong.

But nothing is wrong.

People can assume I’m stand-offish or aloof, but that’s not the signal I think I’m sending either. If one interprets things from a purely neurotypical (a term denoting a typical, non-Autistic brain) standpoint, you’d be right in many cases to assume what you read from my body language, from my facial expressions, or speech patterns is correct.

But it’s not correct, it’s an assumption, which while correct for the majority of people, is not reflective of my internal state. Internally I can be happy, excited, but there is a disconnect in how that reflects, not just in my facial expression, body language, but in my tone of voice.

Masking, surviving in a neurotypical world

Autistic people, when we learn (often by conflict) about the disconnect in outward perception vs internal, often adapt by masking (I touched on this term briefly in my last post, but I didn’t fully explain it). Masking is a way in which Autistic people suppress / replace their behaviours, camouflage them, in order to present themselves as more like their peers.

This includes tailoring our outward body language, facial expressions, intonation to be perceived more in the neurotypical range. It also includes suppressing other behaviours that might help us to self-regulate. I often find that rocking gently calms me, or holding a sensory item.

Masking is something that for a lot of us, just builds over time, because the consequences of not masking, can often be conflict, isolation, and poor social / employment outcomes. Masking can be a conscious act, but often we wear the mask so long that it becomes like a reflex. It’s a defence mechanism, a survival trait, in some respects you can call it a trauma response.

The message is the message… literally…

There’s a fundamental disconnect between the message and the medium. What I mean is, for autistic people, we can be very literal… there’s often no hidden meaning to be inferred by our body language, tone, and other aspects. The words are the message to us. But for non-autistics, the context of the message is the carrier signal itself — Eye contact, tone, stance, facial expressions.

It’s so ingrained in society that eye contact, tone of voice, mannerisms, facial expressions are all key indicators of attention, interest, care, veracity, that to fail to provide this feedback “correctly” can be problematic, even dangerous.

I spend a lot of effort compensating for that difference.

But when I’m deep in thought on an interesting problem, or I’m just tired, my mask will slip. On zoom, that little self-view window shows me when my mask fails. I can see it slip, and the flat expression comes back or I hear my tone level off. I pull the edges of my mouth up to an acceptable level (away from what you might perceive as a frown) like hitching up a pair of jeans that are too loose.

I’m always self-monitoring, adjusting, mirroring.

Conversely, if someone gives bad news… am I looking upset enough? Indifference is not something that goes down well when others are upset.

I mask well in situations like interviews, where I’m leaning on my computing knowledge (one of my special interests), but it’s exhausting. It terrifies me that I might come across as uncaring, not-engaged, so I push my reactions into the range where you expect it. The truth though, is that for me to even take the interview, I want to be there. I’ve already researched your company, I’ve decided if it aligns with my own values by the time I accept the invite.

A different communication protocol.

Many people (including prominent non-autistic researchers) believe we lack empathy. But as the double-empathy problem (a theory by an autistic researcher, Damian Milton) posits, it’s not that we inherently lack empathy, we have a different communication style than that of non-autistic people.

This leads to reciprocal misunderstandings between non-autistic and autistic people, and therefore a failure to empathise on both sides. Just as two non-autistic people understand each other better, the same is true of autistics.

Think of it as a protocol mismatch.

We need you to trust what we say, and what we do, more than the behavioural cues that seem to have become such a mainstay in the modern world.

Communication isn’t one size fits all.

Masking isn’t healthy long term

Just because someone masks well doesn’t mean it is without cost.

Masking takes energy, even when it’s ingrained / automatic, it takes energy. We also suppress behaviours that are beneficial to ourselves, such as stims and sensory friendly behaviours that would help us to balance and regulate ourselves.

If people mask from an early age, they are often missed in diagnosis. A common pattern for high masking autistics is to burn out in their 30’s, 40’s, 50’s. Often, this is the way they are discovered — when it all comes crashing down around them.

Eventually something has to give. That effort has had our CPU running hot for so long, just to maintain our place in the neurotypical world.

Eventually comes Autistic Burnout.

The burnout we are talking about here is not the kind that some surface level “take a week off, visit the beach” kind of thing you hear others talk about. People who suffer autistic burnout often lose skills, and find their ability to cope with the world at large is taken from them. It’s possible to recover, but it can take years for a serious case.

I’m grateful to other autistics for warning me when they have seen I was skirting close to it. The less energy we can devote to not being ourselves the healthier we will be.

I have had periods of burnout in my life. My worst, I literally shut down for two days, and I never returned to my job. I had an abusive boss, and was constantly overwhelmed. It was inevitable in that environment, and took a long time to recover from.

Real “self-care” is making sure my environment is not hostile to my brain wiring, and oscillating between things that replenish my energy versus taking energy away.

Masking doesn’t make someone less autistic

If someone tells you “you don’t seem autistic”, or “you must have ‘it’ mild”, it can be maddening because they are judging you with no knowledge on the effort you’ve made to appear as you do. It happened to me last year, when I chose to share it with someone.

Functioning labels perpetuate this, as all autistics have spiky (variable) skills, just because we excel in one area of life, that can’t and shouldn’t be extrapolated to other areas. There are some basic things I struggle with that I’m grateful those around me can assist with.

Saying someone is “high functioning” denies support, “low functioning” denies agency.

“The spectrum” (air quotes because it is misleading) isn’t a line running from more autistic to less autistic, but more like a radial graph with spokes representing certain areas like executive function, sensory issues, social issues, fixations / interests, eye contact, posture, flat speech, motor skills, and anxiety.

Everyone falls a different place on each. And that placement can vary situationally. It’s very rare for me, but sometimes I experience selective mutism. This means sometimes I can’t speak.

If this seems strange to you, it’s because I do my best not to show it.

One final thing. Don’t assume that because someone is non-speaking, that they are not intelligent. I’m not even going to speak for people here because I’d be speaking over others, which is a common problem.

Please watch “LISTEN”, a film made by non-speaking autistics:
LISTEN Movie

How can one make a place more autistic and neurodivergent friendly?

Acceptance is the first step. If it’s okay to be ourselves, to express ourselves then we can feel safer, and over time we can learn to mask less. That includes self-acceptance… we are convinced our behaviours are problematic and wrong. This takes time to unlearn. Having space to be ourselves is the first step to that.

But other things particularly in a work standpoint are actually quite general, and I’d argue not specific autistic accommodations but healthy for everyone: -

Let go of what we believe the following things mean from a behavioural perspective: Eye contact, tone of voice, paying attention.

What attention looks like is a whole topic which I, as an Autistic ADHD-er as well, could write a whole article on. As Inigo Montoya said “You use that word. I do not think it means what you think it means.”

Make it okay for someone to choose to have their video off

It can reduce the cognitive load needed for me to communicate. I do my best to have it on when it’s important.

Let people block off some recovery / break time when needed in their day.

Back to back meetings are draining. Too much on time means I might end up unable to speak.

Be clear about what a meeting is about, what are the goals, outcomes being sought.

Clear communication reduces anxiety by a huge factor for autistic people. A last minute meeting invite titled “Quick chat” with no other context creates a huge amount of uncertainty for me. Have I done something wrong? How to I prepare for this with no information? If I look anxious it is because I am. I probably think I missed a key cue. I probably think I will be fired.

This happened to me, and I didn’t sleep all weekend.

Asking questions is OK, and not a challenge to a person or a process.

I will ask questions if I need more information or context. Doing so isn’t criticising the thing I’m asking about, I just want to understand it the best that I can. It’s hard to do things I don’t understand the rationale for.

Don’t make specific kinds of social engagement an expectation.

Not everyone interacts the same way. It doesn’t mean they are aloof, not making an effort, or don’t like you.

Being suddenly asked the most simplistic questions can make me freeze. Ice-breakers at work are an example of this. I understand that for most people, asking what their favourite movie is a simple and straightforward question.

However, I need to go back through all the movies I’ve watched, weigh the pros and cons of each, reduce that shortlist to maybe 5. If you ask me why a movie is my favourite, I then feel compelled to write an essay in my head. I don’t deal well with these things requiring simple on-the-spot-answers.

I watched Hannah Gadsby talk about her own experiences of autism on a talk show “Walking out in front of a audience, dead inside. Tea or Coffee? induces panic.” It’s a pretty good summation.

I mean, I eat the same food every morning. I drink the same coffee. When I go out, I need to know where I’m going, what order, and for how long. Routines being disrupted causes me anxiety. Sudden social questions I don’t have a canned response for catch me off-guard.

But…

I like to participate in the ways I can, when I can. For me, I just recently noticed we run a weekly trivia competition via our work Slack. I love general knowledge and quizzes. It brings me joy. I have added this is a part of my social interaction at work. It’s online, and I can participate on my terms.

I’m terrible with small talk , but engage me in my interests, I could talk for hours.

One of them is neurodiversity.