About two years ago, we sat our then nine-year-old son down to review test results from the child psychologist he’d visited a few weeks earlier.

“Did she say I’m autistic?” he asked.

“Yes,” I said. “You are Autistic.”

He was silent momentarily and finally replied, “But I don’t want to be Autistic. The kids at school will just make fun of me more.”

He was only in third grade at the time and was already experiencing bullying by other students.

I know any child could experience bullying, but Autistic children are more likely to experience bullying than non-autistic children. Bullying is defined by the CDC as “a form of youth violence and an adverse childhood experience” and can be:

• physical — pushing, shoving, kicking, etc.
• verbal — name calling, threats, etc.
• social — excluding another person or avoiding them
• damaging personal property

The painful part is knowing that it won’t end anytime soon. He will always be different and differences are targets.

My son’s first bully actually came in the form of an adult: his second preschool teacher. She was a staunch stiff-necked British woman with a permanent sour face.

We didn’t know at the time that my son was Autistic, but the traits were present. Like many Autistic people, he had a hard-wired need for fairness. I remember one issue brought up in a conference session with the teacher. My then three-year-old had a meltdown because he didn’t want to wear his jacket on the playground. I sensed that she wasn’t telling us the whole story, so I turned to my son and asked him why he refused to wear his jacket.

“Because Lilly doesn’t have to wear hers,” he said. Lilly’s mom worked at the school, and Lilly was allowed to run down to her classroom and ask permission not to wear her jacket. My son wanted the same treatment. He wanted to call me and ask if he could not wear his jacket.

“…unfairness is irrational and is caused by prejudices, dislikes and ulterior motives that don’t appear reasonable. Many autistic people see the unfair behaviour as fundamentally irrational and therefore pointless…autistic students can present as very tricky to manage in class as they won’t do things ‘just because’ — they need things explained and teachers don’t often like having to do this.” — Pete Wharmby

Sour face also said he asked “Why?” too much when she gave them instructions. And, in true Autistic form, he’d refuse to follow those instructions without an answer. Autistics don’t grasp authority figures the way neurotypicals do. The instructions need to make sense to us.

His first preschool teacher believed in answering children’s questions, so when my son asked ‘why,’ she explained. She praised him for not blindly following orders and being inquisitive. And he always followed her directions after she answered him.

But this lady only saw this behavior as being naughty. She’d refuse to answer him, and he’d have another meltdown.

“When I say ‘jump,’ the children should jump,” she said.

We moved him into another preschool and warned the new teacher about his behavior.

A week in, the teacher at the new school pulled me aside, “That woman was a bully. Your son is wonderful. He just needs to understand the why behind things and adequate transition time. Any good teacher would know how to handle him.”

He thrived there through kindergarten.

But friction between him and authority figures started again once he entered public school. Like many Autistics, my son had a bluntness and directness about him that made others uncomfortable. His teachers thought he was disrespectful, and his constant need for ‘fair treatment’ in the classroom and calling out to students who touched or bumped into him gave him a reputation for being a difficult student.

His bluntness also contributes to his peers misunderstanding him — maybe even fueling the bullying. Of course, his other Autistic ‘quirks’ surely play into the negative impression other kids have of him like his need to information dump about his special interests, missing jokes, and starting every conversation with “Did you know?”

One kid in his second-grade class discovered he could make fun of my son quietly, out of earshot of the teacher, and my son would externalize his overwhelming frustration with a verbal outburst. The teacher would hear my son, not the instigators, and she’d assume he was starting the ruckus. So, he’d get into trouble, not the other kids.

For example, I remember one call from the principal about my son having an outburst at recess. He “yelled at the teacher for no reason.”

When my son came home, I asked him to explain what happened. When the teacher turned away, this bully threw a large rubber ball at the back of my son’s head. He told the kid to stop several times but it continued.

Frustrated and overwhelmed by the repeated abuse and the teacher not paying attention, my son yelled, “MS. SO-AND-SO! WHY IS [BULLY] ALLOWED TO THROW BALLS AT ME?”

The bully told the teacher it was once, and it was an accident. She didn’t believe my son and sent him to the office for disrespect.

Occurrences like this continued. The bully and his pals would purposely kick my son’s chair during class. He’d tell them to stop. Then he’d tell the teacher who believed the bully’s excuse about it being an accident. Then, he’d finally explode with a loud verbal meltdown.

And off to the office, he was sent while his bully got away with it.

We’ve spent so much time at home working with him on how to process his anger. We’ve talked to him about the appropriate way to respond to these kids — ask them to stop and then speak to the teacher. Unfortunately, the teachers already had it in their heads that he was the problem child. Getting to the root of his outbursts was not a priority. They wouldn’t listen to him.

At this point, we realized a diagnosis could become our most valuable tool.

We figured out early on that he was Autistic. But my son didn’t need academic support, so going through the expense of a diagnosis didn’t seem necessary. That is until we needed to force the school to see my son differently.

He is different, and they need to understand it.

Submitting the diagnosis to the school triggered a series of evaluations. While it was determined (like we knew) that he didn’t need academic support, they did see the need for a behavior plan.

So that’s what we did.

We worked with the school and its teachers to put in behavior accommodations. A few we included:

• When frustrated and overwhelmed, he can ask to stand outside the room to recenter and avoid a meltdown.
• When he gets a little too blunt or direct, the teacher will speak to him privately about why it was inappropriate.
• And most importantly, the teachers had to pay closer attention to how other kids treated him.

Armed with a diagnosis, his teachers had a better view of him — they understood his differences, and started to notice how other students treated him.

Things improved dramatically.

His fourth-grade year was the first full year with his behavior accommodations. And his teachers — we’ve been blessed with teachers that take it to heart — used it well. Once they started to use the accommodations instead of sending him to the office, they got to know him better — the real him. One teacher said that he became her favorite student after figuring out how to work with him.

It wasn’t until the teachers realized that comparing him to the ‘normal’ student wasn’t the right way to approach him. He was different — he’s Autistic.

But the teachers can’t stop all bullying from happening. They can’t prevent the other kids from excluding him. All the other kids receive invitations to birthday parties, but he doesn’t. The other kids hang out on the weekends but don’t invite him.

He noticed.

We noticed.

And as he enters junior high next year, we are worried that it will only be worse.

Since Autistics don’t communicate as neurotypicals do, they don’t meet society’s expectations for ‘normal.’ The communication differences become increasingly noticeable throughout adolescence. Other kids will start to navigate the social nuances of communicating and pick up non-verbal communication skills, while Autistics rely on direct and honest communication. Even when Autistic children attempt to communicate like others, their inability to grasp all the social nuances can prevent them from fitting in.

Like all moms, I wish I could protect him from the hurts and pains of growing up. I remember what it’s like to be bullied for being different, for being Autistic. While it breaks my heart that he doesn’t want to be Autistic, I understand why.

Though, his life, I tell myself, will be different than mine. I didn’t have a diagnosis and grew up in an abusive family — where being different made me a target. I always thought something was wrong with me. As a result, depression and anxiety clouded my childhood.

But he has a diagnosis and a family who reinforces that nothing is wrong with him, just different.

His family loves him as he is.

His teachers have a better understanding of him now.

We have plans in place to help him.

But I want him to have friends. I want his peers to see how wonderful he is and give him a chance. It’s overwhelming to think of the isolation and exclusion he may continue to experience.

While chaperoning a field trip for his gifted class, one of his teachers leaned across the bus aisle and said, “My son is just like yours. Kids picked on him, and he didn’t have friends. But in high school, he found his people, other kids just like him. So will your son.”

I’m grateful to her for those words. Does it make it easier? No. But it does give me some hope? Yes. High schools around here are HUGE. There have to be kids he can connect with.

I’m still holding out hope for a positive junior high experience.

All we can do is support him and help him embrace who he is.

Do you remember those hearing tests in elementary school? 

A test administrator would plunk bulky headphones over your ears and ask you to raise your hand every time you heard a sound. I always expected to fail those things but never did. 

Once my mother asked my doctor to do the test. She was certain I had hearing problems because I was always asking people to repeat what they said. My teacher had also complained about the number of times she had to say my name before I’d respond. 

But, alas, I passed the hearing test…again. 

My doctor gave my mother some excuse about not paying attention and needing to focus more, blah, blah, blah. 

What no one realized and, as a child I was unable to articulate it, I could hear just fine. The issue had nothing to do with a refusal to pay attention in class nor with my hearing, it had everything to do with the way I process sound.

Even in adulthood, I struggle to process what others are saying, have extreme sensitivity to sounds, and can’t filter out background noises. I’ve found ways to excuse these issues like, in groups, mirroring everyone else’s responses. If they nod their heads, I nod my head. In one-on-one situations, I’ll say I have poor hearing even though it’s a lie to explain why I’ve asked them to repeat themselves a few times. 

It wasn’t until I was diagnosed with Autism at the age of 39 that I figured out why this was happening. Following my diagnosis, I put in a lot of time researching autism. So many ‘wrong’ things about me were finally explained. 

Now I understand that, like many autistics, I have auditory processing disorder.

What is auditory processing disorder?

Auditory processing disorder is a condition where you can hear sounds normally, but your brain has trouble understanding and making sense of those sounds. It can make it difficult to understand speech, follow directions, or distinguish between similar sounds.

Although anyone can have auditory processing disorder, approximately 5% of children have it, experts have estimated that up to 80% of autistic people have some level of auditory processing issues.

While researchers and doctors don’t know the exact cause for auditory processing disorder in autistics but some research suggests it’s an issue with autistic brains’ limited ability to store information into long-term memory. 

What we do know is anxiety, stress, and fatigue can exacerbate it.

Like all autistic traits, auditory processing issues can present differently from individual to individual. 

Hypersensitivity: 

Some sounds can be overwhelming or too loud. This one is more noticeable in individuals because a common response is to cover our ears. 

I covered my ears often in childhood but, unfortunately, was ridiculed by those around me about it. “It wasn’t THAT loud,” they’d say. 

For a long time, I purposely avoided covering my ears to avoid being picked on. It was painful to hear the sound. But now that I know why I’m sensitive to sounds, I now allow myself to cover my ears. I’ve also purchased Loops ear plugs which I carry in my purse.

Our hypersensitivity can also cause of to have a physical reaction to common sounds that may not bother most people. 

For me, hearing people smack, even small smacking sounds, sends my anxiety level through the roof. There are specific words that make me cringe when I hear them. I’m not sure why but it sounds like nails scratching a chalkboard. That’s the reaction I have. 

Filtering sounds: 

For those of us that experience this one, it can be difficult — often impossible — to filter out background noises and focus on one sound. 

Having a conversation in a restaurant is an exhausting experience for me — I can’t filter out other conversations, the clanging of utensils, and doors opening and closing. 

This can also contribute to most autistics’ need for quiet areas to work instead of open-concept office spaces. To listen to conversations with coworkers or on the phone, we have to fight against other sounds like fingers typing keyboards, mouse clicks, elevators moving, heavy footsteps down the walk ways, the air conditioner running, and coffee pots brewing. 

Mental Processing Speed: 

This one is a rough one to live with, at least, from my personal experience. My brain processes information at a slower pace than neurotypicals. I can hear what someone is saying — I hear the words — but understanding their meaning takes some time. I’ll understand a joke a minute or two after everyone else laughs. 

Those of us that experience this often miss steps in verbally delivered instructions and ask people to repeat what they’ve said. 

Prosody: 

Prosody is the rhythm, intonation, and emotional tone in speech. Some autistic people can have difficulty interpreting these cues, which interferes with our ability to understand the emotional context of conversations. 

My daughter, who is eight, loves to joke about how much I ruin sarcasm. She will say, “I hated my dinner. I can’t believe you fed that to me.” I can never tell if she is being sarcastic or really hated her dinner. I’ve since learned to look at her plate before I respond. If she ate everything, then she’s being sarcastic. If she’s hardly touched it, then she probably didn’t like it. 

For people I know well, I try to decide if what they said is something they’d normally say — does it fit a pattern of previous behavior, beliefs, or conversations, —  or look for eye rolls and other dramatic facial moments that might indicate if it’s sarcasm. 

And this goes for other emotions as well. I can’t tell if something is bothering someone by what they say unless it’s really dramatic. Instead, I focus on changes in their behavior or facial expressions, etc. Are they crying (or not smiling)? Are their eyes red? Are they fidgeting with something? 

Be patient and deliver information in multiple ways

I was a teacher in a past life. One of the things we were taught was to ensure our lessons covered all the learning styles. Offer notes, give verbal instructions, provide visuals, and get hands-on if possible. Don’t just read Shakespeare, give the kids pool noodles and have them act out fight scenes! The more senses that are involved, the more people will remember the information. 

Whether you are in the office or in a classroom, there is no reason you can’t provide information in multiple forms. Relying on verbally delivered information is risky even for neurotypicals. (Ever heard of the telephone game?) Providing information and instructions in written form and with visuals ensures everyone understands the concept or problem being discussed. 

Most importantly, be patient. It doesn’t matter if the person you are interacting with is autistic, ADHD, or neurotypical. Auditory processing issues can affect anyone. Give people a moment to process new information and go a step further by giving them license to take as much time as they need.

A simple, “You don’t have to answer that (provide feedback, etc.) right now. You can take some time to think about it and get back to me,” can be a relief to someone dealing with auditory issues. 

When I was a child, my parents encouraged – well, more like forced – me to make eye contact.

“Look me in the eyes when I speak to you,” they’d bark.

They didn’t understand how painful making eye contact can be for me. It feels like I’m forcing myself to hold my hand over an open flame. My body is screaming at me. My brain is triggering every muscle to move, and it takes every ounce of energy to restrain myself.

I always wondered why it wasn’t easy for me. And why it never seemed to bother anyone else. It wasn’t until my autism diagnosis that I understood. Since then, I’ve questioned a lot of social norms that don’t seem reasonable.

We attach certain character traits to someone who makes steady eye contact during a conversation. But if we force everyone to do it, does it really mean anything?

Our society adopted eye contact as an important part of nonverbal communication. For many in Western society, we believe it conveys respect, attentiveness, and confidence. Yet, there is no basis for this perception. And by accepting and enforcing this expectation, we are marginalizing those with neurodivergent conditions (like autism), different cultural backgrounds, and personal trauma. 

The Many Myths of Eye Contact

It isn’t a myth that many autistic people are uncomfortable with establishing and maintaining eye contact. Many, especially women who went undiagnosed as children, force themselves to either suffer the discomfort or pretend to look people in the eyes. Pretending can be looking at a person’s ear, nose, or mouth. Somewhere close to the eyes to appear as though we are following social expectations.

But this expectation – to make eye contact during conversations – was established on assumptions. Eye contact is not needed for effective communication.

Let’s look at a few eye contact myths.

Eye Contact is Universally Expected

My first university was in Hawai’i and had a large Asian student base. One of my professors started the first day of class with a speech directed at the Asian students in the room – “In the United States, your role as students is to take part in class, raise your hand and answer questions, and look me in the eyes when you speak with me.”

My heart sank for them. I knew firsthand what it was like to be forced to conform to uncomfortable social standards. In many Asian cultures, eye contact, especially with an authority figure, is perceived as rude and disrespectful.

As our world grows smaller and more connected, we must recognize that nonverbal communication isn’t always universal.

What is appropriate in one culture may not be in another culture.

Eye contact is not a universally accepted practice.

Are you paying attention to me?

Sitting in a meeting, having coffee with a friend, or conversing with the bank teller; in all conversations eye contact is used to measure the level of attentiveness of the other person. But as a former high school teacher, I can tell you from experience that avoiding eye contact doesn’t mean someone isn’t paying attention. I’ve had many ADHD students doodling in their notebooks who could still recite verbatim what I said and participate in class discussions while never lifting their eyes from the paper in front of them.

Some people need to avert their gaze to focus on what you are saying. 

Autism is another example. As an autistic, my brain doesn’t filter out unnecessary external stimuli. It takes a lot of effort to hear and process a conversation when you can’t filter out unimportant details. The music in the restaurant, the waiter rushing past the table, the temperature of the room, and monitoring my facial expressions can be overwhelming.

Now I’m expected to read my conversation partner’s facial expressions on top of all that? It’s too much. Cue the sensory overload!

Sensory overload will also interfere with my audio-processing ability. Looking someone in the eye increases the number of times I have to ask the other person to repeat themselves. Removing the need to read their face, especially their eyes, makes cutting through the other external stimulus easier. I can then focus on processing what they are communicating verbally.

Contrary to society’s assumption, averting my gaze doesn’t mean I’m uninterested. I want to focus on what you’re saying as much as possible, so I look away.

And research supports my experience.

Researchers studied gaze aversion in allistic individuals and discovered that “averting the gaze has functional consequences. That is, for moderately difficult questions, people are more accurate [with their answers] when they avert their gaze (here, close their eyes) than when they do not.”

And they “speculate that averting the gaze helps people to disengage from environmental stimulation and thereby enhances the efficiency of cognitive processing directed by nonenvironmental stimulation.”

Any autistic person can tell you it does. But, as it turns out, it helps everyone, too, not only us neurodivergent folk.

Averting our gaze can improve our cognitive abilities.

Liar, liar, pants on fire!

Every time I’d tell my parents the truth they would demand that I look them in the eyes and tell them.

I learned early on that eye contact = truthfulness. Since 4th or 5th grade, I forced myself to look the other person in the eye when someone questioned my integrity.

It worked for a while. Until my little sister mastered lying to our parents’ faces, she held her gaze steady and calm. And she got away with many horrible things because of it.

It’s crazy that we make these assumptions about eye contact. I guess it’s because we view eyes as the “windows into the soul.” We assume a liar would look away to avoid feeling exposed through eye contact. But research says that’s not the case. Liars, in fact, are more deliberate in their eye contact.

“It comes as no surprise that most people think gaze aversion signals deception. Intuitively, this makes sense. People who feel embarrassed avoid eye contact. People who feel ashamed avoid eye contact. People who are under a heavy cognitive load tend to avoid direct eye contact. However, it does come as a surprise that research shows there is no connection between lying and the amount of eye contact between the liar and the target of the lie.”

Jack Schafer Ph.D.

Also, looking away while speaking can help with accurate memory retrieval. In short, it improves your chances of telling the truth – in accurate details.  

Each of these studies chips away at our assumptions about eye contact and, hopefully, leads us to consider other assumptions about nonverbal communication.

Awareness can help us be inclusive of everyone

If we want a more inclusive society, we should revisit our expectations around social norms, like making eye contact.

Research tells us that what we know about making eye contact isn’t accurate. And we are leaving people behind because of it. For example, one of my coworkers removed a candidate from consideration because he couldn’t make eye contact. “It’s just weird, you know?” she said.

Did she pay attention to his experience? Or his answers to her questions? No. In fact, she dismissed a high-quality candidate because he didn’t conform to her assumptions about non-verbal communication.

We need to open ourselves to different communication styles.

Accept, don’t judge, people for averting their gaze during a conversation. Recognize that forcing eye contact can traumatize many and only increase social anxiety.

Many people are confident and knowledgeable but are uncomfortable making eye contact.

More and more autistics are speaking up about our experiences. But our call for a society that is aware and inclusive doesn’t stop at us – it extends beyond us. That’s what I love most about autistic awareness. The more we question social norms and accept autistic differences, the more we accept everyone’s differences. 

Recognizing and respecting that nonverbal communication styles often deviate from the norm, we listen more and assume less.

So, as we challenge social norms such as eye contact, let’s move beyond the “disability” label and remind ourselves that this is inclusion in action. Communication styles vary from culture to culture, brain to brain, and are influenced by personal experiences such as trauma and anxiety.

Put more weight on a speaker’s words than their ability to follow social norms. And remain consciously aware that much of what we understand about nonverbal communication is fluid and often rooted in false assumptions.

And please don’t ever force your child to look you in the eye.

The natural communication style for autistics tends to take a straightforward approach. We know what we want to say, and we say it. But there’s more to communicating than words for non-autistics. Words are just one piece of the puzzle, and the non-verbal communication accompanying a verbal message can significantly influence how others interpret the message.

Autistics’ limited ability to grasp non-verbal communication skills can cause misunderstandings. We cause conflict and lose friendships and jobs, often not realizing why. There are many types of non-verbal communication, but the three types that have been more problematic for me growing up are paralanguage, facial expressions, and eye contact.

My earliest memories specifically address paralanguage, so I’ll start there. I’ll discuss my experience with facial expressions and eye contact in upcoming posts.

Paralanguage, a new term for me despite a long history of being confused by the concept, is the nonverbal qualities such as the natural rise and fall of the voice and tone when speaking. These things can help convey emotions and nuanced meaning behind our verbal message. However, autistics often don’t hear what our voices are doing. Many of us have a flat or monotone delivery or an unusual vocal pattern, often emphasizing sounds unexpectedly.

How many times did people tell you, “It isn’t what you say but how you say it,” as a child?

My parents often said this – or some variation – in my childhood.

I distinctly remember my mother leaning over and whispering in my ear at my birthday party. As I unwrapped my gifts, I’d thank each gift giver. But she’d say, “You don’t have to like the gift, but you do have to convince them that you like it when you say, ‘thank you.’”

I was confused. I liked my gifts. How was it possible that saying thank you meant that I didn’t? But apparently, my “thank you” wasn’t delivered with enough emotion to show my excitement.

Even in my young adult years, as I entered the workplace, coworkers told me several times that I was being rude. I had no idea why because my intention wasn’t to be rude.

I’ve tried my whole life to figure out this “tone of voice” thing, and while I can somewhat figure out other people’s tone of voice and what they mean, I do not know what my tone of voice is doing at any moment in time.

Autistic Science Person

Like many adult autistic women raised not knowing about our autism, I spent a lot of time studying other girls and women around me. I’d practice their sentences and attempt to sound like them. Society expects women to be friendly and have a pleasant voice. To compensate and avoid misunderstandings, I consciously overdo the emotion in my voice. But it feels weird and unnatural. And cheesy. It’s sooooo awkward to me.

Now, I have a checklist in my head as I open gifts. I tell myself to smile and then say, “I LOVE my GIFT!” And follow it with one reason I love the gift – just to emphasize that I love it. As I hear myself say it, it sounds so cheesy and over-the-top. I worry that over-exaggerating the emotion in my voice can be taken as sarcasm or a backhanded insult.

It takes effort and concentration. And I still don’t always get it right. My voice can rise and fall in unusual ways, emphasizing syllables that can confuse others. Autistics can identify tone in other people’s voices but not in our voices as we are speaking. (Sometimes I have to record meetings at work so I can refer back to information presented during the call. I hate listening to myself in recordings because I can pick up the unusual and over-exaggerated sounds in my voice.)

Although facial expressions don’t come naturally to me, I find they are a little more predictable and use them to help emphasize my verbal message and cover up my paralanguage mistakes. (But that’s an article for another day.)

As an autistic, I specialize in hyper-focusing. Once I’m deep into my project, I cannot quickly switch focus. It takes a good minute to do that. If someone interrupts me while I’m hyper-focused and asks a question and I don’t take to reorient my mind, I’ll respond without effort to exaggerate my tone. It’s direct and flat – and apparently, sounding rude or argumentative.

My tone of voice is the most challenging skill to mask. And, quite possibly, the biggest reason I can’t seem to keep most of my friends.

Looking back on my suddenly lost friendships, I wish they’d asked about my intention. There is nothing wrong with asking for clarity. “Hey. I was a little upset by what you just said. Did you mean it to come across as rudely as it sounded to me?”

If you have a coworker or friend who is autistic, please keep this in mind: we don’t know what our voices are doing or not doing. Please give us the benefit of the doubt and listen to our words. We usually say what we mean.

Seeking to understand goes both ways. Too often, autistics are expected to pick up the total weight of adapting to a non-autistic communication style. But it’s a two-way street. 

When sharing my autism diagnosis, it’s not unusual that I hear a variation of this phrase: “We’re all a little autistic.” (I distinctly remember my boss using this exact phrase.)

Um, no. Of course, not everyone is a little autistic. If everyone is, then there wouldn’t be a need for a diagnosis, would there? Autism would be the norm. But it’s not. It’s called the autistic spectrum disorder (ASD) for a reason – it’s a spectrum of autistic traits collectively representative of autistics, not neurotypicals.

Usually, comments like this are directed toward autistics whose traits present mildly and are highly skilled at masking them. 

But responses such as this only belittle us by dismissing our autistic experiences. Essentially, the person is saying that they don’t believe that our experience is any different than others. 

Some people may have good intentions behind using this response. By declaring that everyone has similar lived experiences, they hope to show an understanding of our struggles. Perhaps it’s an attempt to say, “I know what you are going through. I have social anxiety, too, so I can relate!” 

Whether they don’t believe us or are misguided in their efforts to relate, falsely claiming that everyone is on the spectrum is harmful to autistics. 

The dismissive nature of the response can cause us not to seek out the support we need. Because everyone is “a little autistic,” we experience similar struggles. Since everyone can overcome them without support, we are expected to do the same.

It can also lead us to question our diagnosis – specifically for late-diagnosis autistics. We’ve spent so much of our lives living with imposter syndrome because of the need to mask our traits. Too often, our ability to mask is fused with our true selves. We’ve pretended to be someone else for so long that it becomes difficult to distinguish ourselves from the mask. 

If everyone else is a little like me, then am I really autistic?

We need to remember this: neurotypicals see the mask and not the struggles behind the mask. To the outside world, the authentic autistic is the imposter because that is the side of us they have not seen. While for us, the mask is the imposter and our autistic traits are a part of our authentic selves.  

Yes, a neurotypical can indeed have one or two overlapping symptoms – but that doesn’t mean they are on the autistic spectrum. Anyone can be diagnosed with OCD or social anxiety, or a sensory issue. But these diagnoses are separate from autism. 

As stated by the Center for Disease Control, “To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction…plus at least two of four types of restricted, repetitive behaviors…” 

To be diagnosed with autism, you must exhibit a collection of autistic traits. Although each autistic has a different autistic trait profile (because, you know, it’s a spectrum), we still need to exhibit a collection of traits within the categories identified in the DSM to be diagnosed with ASD. 

So, let’s take a look at social anxiety. You can be autistic and have social anxiety…or just have social anxiety. 

The autistic trait is the limited ability to pick up on non-verbal social cues like tone, body language, and facial expressions. This can cause an autistic person to have social anxiety. A neurotypical person can have social anxiety but not be autistic. The trigger for neurotypical social anxiety is usually the fear of being judged. 

Healthline states that “while some symptoms between [ASD] and social anxiety, like social behaviors, may overlap, [Rochelle] Whittaker [Ph.D.] emphasizes that the causes of the symptoms are not the same.”

So, why do neurotypicals believe everyone is on the spectrum somewhere? 

They may not see the level of nuance in the distinction between autism and other overlapping symptoms. Quite simply, it comes down to a limited understanding of autism. 

To be honest, I’m not sure they intend to be insulting. As I stated before, they are expressing, albeit poorly, the discrepancy between what they see (the masking) and the autistic traits. Or it’s their attempt to make us feel connected: others can relate to our struggles. 

Either way, don’t allow someone else’s disbelief to make you feel like an imposter. You are the only person that knows where you end, and the mask begins. Only you know your lived experiences. 

If you can, take this opportunity to educate them on autism. Explain why they didn’t “notice” your traits and why everyone isn’t somewhere on the spectrum. Hopefully, they are open to learning more. 

Ultimately, every person’s lived experience is different from our own. We need to be open to giving space for each person to represent themselves authentically and not dismiss their experiences in disbelief or in a misguided attempt to relate. It isn’t limited to interacting with autistics; it’s for anyone with an unseen disability or condition. Many conditions and disabilities can not be seen. But we need to listen to and believe the person living with it.

As an autistic person, I hate the question, “How are you doing?”

When I say that I hate the question, think Grinch-loathes-Whoville-and-Christmas level hate.

Seriously, it’s a horrible question. Why haven’t neurotypicals figured this out yet?

As most autistics do, I learned about the insanity of this question the hard way. People may ask this question, but they don’t want to hear the answer.

No matter how you actually feel, neurotypicals expect to hear, “I’m fine. And you?” in response. This doesn’t come naturally to autistics, and it isn’t a habit to learn quickly.

An exhaustive thought process occurs from hearing the question to verbalizing the response.

Want to know what it’s like? Peek into my head. Come on; I won’t bite. Get in here:

A co-worker walks by and says, “Hey, Sarah. How are you?”

My thought process:

Ugh. THAT question. I don’t know. How am I? I’m hungry, but he doesn’t need to know that. I’m depressed because I hate my job. If I say that, does it make me a Debbie-downer? Maybe I should avoid that subject since he is a co-worker. But perhaps he feels the same way, and it would be nice to know someone else hates this place, too. How well do I know him? I think he has kids. Should I tell him that I was excited about my son’s promotion in swim class last night? Does he want to hear about my son? Probably not…What part of my life is he asking about???

Oh, yeah. He probably doesn’t want an answer. Why do people even ask this question if they don’t want the answer? What’s up with not telling the truth? They ask me how I feel but don’t want the answer. They want everything to be fine – let’s lie to the world and say everything is fine. Why ask the question if you don’t want the truth? Geez. 

Okay, slow down. Sllllloooooowwwww down brain!

Just tell him you’re fine – isn’t that what people expect. Quickly. Before too much time has passed. He’ll think I’m ignoring him. 

“I’m fine.”

There. I said it. Wait. He’s just staring at me. Shit. I forgot something. He’s looking at me weirdly. What did I forget? Oh, yeah…

“And you?”

Okay, he’s fine as usual. But wait, he can’t be fine. His face is red, and he’s gripping his pencil so hard his knuckles are white. Dude, you aren’t ‘fine.’ Why would you lie about that? I know you are lying to me. 

Is it his mom? She was in the hospital for a while. Maybe his wife? Is he sick? Did his boss chew him out? Is he mad at me? Was my tone off? Did I come across as rude? Too abrupt? Am I smiling to let him know I’m not annoyed at his question? What else am I forgetting here?

Seriously, WHY IS YOUR FACE SO RED????

Shoot. Did he just ask me another question? I missed it…

So, why is this a big deal to autistics?

• Cognitive Empathy 

According to Sara Hodges and M.W. Myers, cognitive empathy is “having more complete and accurate knowledge about the contents of another person’s mind, including how the person feels.”

Unfortunately, mindreading isn’t in the autistic skillset. Neurotypicals can weigh the type of relationship they have with someone to predict what’s in their head.

But for me, the expectation of invoking cognitive empathy adds another round of wheel whirling in my head. There are too many variables to consider.

If I’m too tired to go through this thought process, I’ll start answering. I’ll pour out the details or stumble my way through as I attempt to shorten the response. All this takes energy to reign in the details because the question isn’t specific enough. How am I? There are so many paths to go down for this, and I have no idea which one to take.

• Literal Interpretation of Language

I remember the first time I heard the phrase: it’s raining cats and dogs. My mother was standing at the front window with the curtains open. I ran to the window to look because, you know, cats and dogs are falling from the sky, right? Gotta see that!

To my disappointment, there were no cats and dogs – just rain. That was my first lesson in idioms.

To this day, I go through a translation process in my head when I hear that phrase and many others. Same with the greeting, “How are you?”

Autistics take language at face value. What you say is what we expect you to mean. If you ask, “How are you doing?” then answering the question honestly should be the expectation. It feels fake otherwise.

If you don’t care to hear the answer, then a simple “Hello,” is greeting enough.

The point of sharing this is: If one greeting can cause this much anxiety to an autistic, can you imagine the anxiety and exhaustion of an entire conversation? We’re expected to communicate by neurotypical rules. It’s complicated, exhausting, and confusing.

For many neurotypicals, all of these “unspoken” rules come naturally. Neurotypicals can read an interaction and relationship enough to respond to this seemingly simple question.

But for autistics, it isn’t apparent. How do I know if someone is willing to hear the honest answer? When is the “I’m fine” response expected?

I just want people to mean what they say….or ask in this instance. Is that too much to ask?

We all know that interrupting someone is rude. Our parents taught us that. Our teachers taught us that.

It’s frustrating to be engrossed in a task or conversation and be interrupted. Just about anyone, neurotypical or neurodivergent, is irritated on some level.

I envy the person that can pick up a conversation with, “Now where was I? Oh, yeah! So, as I was saying…” I’ve never been that person. The person that can take a few moments to remember and pick it up the conversation again. Me? If I’m interrupted, I need to start the thought process over from the beginning.   

For autistic people, interruptions are on another level. Forget irritated – try emotionally shattering. I’m so involved mentally in the task that when someone interrupts me, I’m ripped out of my body. I’m thrown off and expected to pay attention to the interrupter. But my attention doesn’t want to let go of the original task. It’s mentally and emotionally jarring.

Masking is virtually impossible at this moment. Attempting to stop the look of frustration and avoid a terse response is hit or miss.

The response to being interrupted during a task at work is amplified. The interruptions aren’t a sometimes thing, they are excessive. It’s exhausting to shift focus to the interrupter then shift back to the task at hand. It’s like spending all my time sorting coins only to have someone come along and throw them all around the room. I can’t jump into the task where I left off, I need to start at the beginning to reorganize the information in my head and follow the thought process all over again.

On top of frequent socializing, task interruption is probably one of the main causes of exhaustion for me. At the end of the day, I’m frustrated and on edge. I can’t focus on anything. And I take all that home. Sustaining this work method just throws me into meltdowns and burnouts.

Notifications for chats, phone calls, email dings, meetings, and people randomly stopping by my cubicle. For much of the pandemic, I’ve worked remotely – desk drops are replaced with Teams chat notifications or unexpected calls.

Even though meetings are scheduled, they too interrupt my work. I don’t have the time to focus deeply on a project before shifting over to another meeting. When autistic people focus, we can lose all track of time and miss a lot of our own body signals until the last minute. When I’m focused, I don’t know when I need to go to the bathroom until it becomes an urgent feeling. Even though I know a meeting is coming up, I’m so focused and lose track of that time that the notification reminding me of the meeting is a frustrating interruption.

Lately, I started exploring a few options to reduce the interruptions. Blocking large chunks of time on my calendar, turning off notifications, and silencing my phone help a little. But they don’t stop the persistent co-worker or boss in an environment where every employee is expected to jump at any moment’s notice. I live in fear of being fired because I set up boundaries that others don’t.

If we really want to create inclusive work environments for autistic people, the entire way companies work will need to change. That’s what companies don’t understand.

It isn’t a few accommodations for the autistic person – it’s how everyone in the office works. Although interruptions effect autistics at a much greater intensity level, they do negatively affect the overall productivity of everyone at the office.

According to University of California Berkley, “The length of our recovery time depends on the complexity of our task; ranging anywhere from 8 minutes for simpler tasks to 25 minutes for more complex ones,” and, “Frequent interruptions can also lead to higher rates of exhaustion, stress-induced ailments, and a doubling of error rates.” 

Avoiding interruptions isn’t just good for autistics, its good for the entire workforce. If only we could rely less on accommodations (which many companies do not approve or support anyways) and more companies overhauling the way they work.

When the entire company culture is aligned on reducing task interruptions and maximizing productivity, autistic employees – and employees with other neurodiverse conditions – benefit as well.

If only, right?

Is LinkedIn promoting its polling feature? I must have missed the memo. All I see as I scroll through LinkedIn these days are polls. Polls about leadership and jobs and benefits. Polls about inclusion and interviews and, well, it turns out you can make a poll about any topic. Just scroll through your LinkedIn feed; it’s all there. 

Sometimes I play along to see how everyone else voted (you only see the updated results if you vote or wait until the vote closes but I’m too impatient). But every so often, a poll comes along that fires a few synapses in the old grey squish ball. 

Earlier today, I scrolled through a poll asking about language preference, specifically autistic self-identification. 

It comes down to “an autistic person” or “a person with autism.” 

If you know anything about autism awareness, there is a lot of discussion around this topic and some heated debates.

Strange that there is so much chatter out there about language choice. But believe it or not, your language choice influences how you think. (Lera Boroditsky gave a powerful Ted Talk about the influence of language choice on this subject.) So, how we choose to be identified reflects how we think of ourselves and the role autism plays in our identity.

In the end, it’s personal preference; each autistic person (or person with autism) has reasons for their choice in language. My own choice is identity first: autistic person. 

The poll I mentioned above led me to think of an experience with a coworker who asked me this same question. Wanting to avoid insulting autistic coworkers, she asked me what language was appropriate. 

Of course, I said, each person is different. I prefer “autistic person,” but not everyone does. 

Every autistic person is passionate about their language choice. 

But, looking back at the experience, it never occurred to me the importance of explaining why that is. 

Why did I choose to identify myself as autistic first? Why is language so important when discussing autistic identity?

Autistic awareness is essential, but that isn’t my goal. My goal is to help people understand autism. If I can’t articulate my reasons, I lose authority when explaining autism to others. While it would be nice to write off our choices as – it was MY choice; therefore, you must respect it – that isn’t how others learn from us. Respect branches from understanding. 

Many neurotypicals don’t understand why autistic people are so passionate about the language around autism. The most important takeaway from this for neurotypicals is understanding why language preference in autistic identification is so important and being respectful of our individual choices. No, we don’t expect neurotypicals to read our minds and know every individual’s language preference. But once our choice is shared, it should be respected.

After gnawing on my thoughts for a bit, I am ready to articulate my “why” in choosing identity first language.  

I recognize the weight of our society’s impact on me because of my autism. Being autistic becomes an obstacle in the world at large. Our systems and social experiences are defined by neurotypical standards and not aligned – nor accepting – of my autism. I’m expected to adapt to neurotypical standards instead of being myself.

When I step outside my door, my autism, whether or not I want it, defines me.  

Friendships fall away because I say or do “weird” things or need breaks between social events. 

For those who don’t know I’m autistic, I’m “a little off” in their eyes.

Stores, my office, and other public places are sensory bombs. The sights and sounds and buzz of voices and noises are overwhelming. 

My job operates counter to my brain. 

Because society is not inclusive of autistics, my autism does define my place in it. 

And that is why I choose to be called an autistic person. 

That said, I would like that to change. With education, understanding, and acceptance in our society, perhaps it will. 

One day, I’d like to identify myself as a person with autism. But to do that, society will need to not only accept me but INCLUDE me as I am. When society no longer forces my autism to define me, I can identify myself as a person with autism. 

Until then, I prefer “autistic person.” For me, it accurately represents me.

I’d love to hear from others on their language preference and why. Feel free to leave a note in the comments. There is no right or wrong choice.

Humans have fluid identities. The names or labels we use influence how we see ourselves and our place in the world. We build our experiences, emotions, and communities around those labels. As new labels are added to our lives, we reevaluate our identities to incorporate our new understanding.

This process happens after an autism spectrum disorder diagnosis. Names have value in our identities so it’s no wonder that a “battle over the name” has cropped up since the removal of Asperger’s Syndrome from the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Published in 2013, the DSM no longer supports an Asperger’s Syndrome diagnosis. Instead, the DSM reclassified it as autism spectrum disorder.

The general argument for the change is that the parameters for Asperger’s were not accurate and inconsistently applied. By reclassifying it, the methods for diagnosis are more standardized. It helps cut down on the confusion when diagnosing.   

Asperger’s fits comfortably on the autism spectrum. As a spectrum, individuals have different needs, but the types of symptoms remains consistent. To be diagnosed with Autism Spectrum Disorder, an individual must have social communication and reciprocity deficits and restrictive and repetitive behavior. These parameters for a diagnosis encompass those who would have received an Asperger’s Syndrome diagnosis before 2013. 

Despite the exclusion from the DSM, many continue to use the term Asperger’s, and it has caused a debate within the autistic community. It turns out there is more to the term Asperger’s than just a name. 

For those diagnosed before 2013, Asperger’s has become a part of their identity. It was the label given to them. It explained why they are the way they are. For a group of people who rely on routine and predictability, it is easy to see why a change in diagnosis can cause anxiety. They researched and learned about themselves in relation to an Asperger’s Syndrome diagnosis. 

Although my diagnosis is high-functioning autism, the psychologist who diagnosed me continued to refer to it as Asperger’s. (Had I been diagnosed before 2013, she said, I would qualify for the Asperger’s Syndrome diagnosis.)

It was with this term in hand that I set out on a path of understanding and self-acceptance. Following my diagnosis, the books I read to learn more about myself were written by adult Aspie women. Those early days of research aligned the Asperger’s label with my identity. The women I’ve learned from still use the term. I built my community on the term Asperger’s.

But I know it isn’t my “official” diagnosis. So, in the past few months, I’ve worked harder at moving between the two labels; increasing my comfort as an individual on the autistic spectrum.

There is a stigma associated with autism. People are less familiar with Asperger’s than autism; and this opens the door for me to educate them. It’s the groundwork to influence their perceptions before diving into the “it’s on the autism spectrum” part. 

Besides, we all know about Rain Man. He’s laid out some restrictive assumptions about what autism is and isn’t. I do not align with most people’s perception of autism. My life is littered with rejections, abuse, and bullies; people have always misunderstood me. Misconceptions about autism stare me down like a beady-eyed schoolyard bully ready to corner me on the playground. I fear those perceptions. 

While I feel “Aspie,” I catch myself using autistic more often. In expanding my connections to other autistic women, I feel less alone in my responsibility to educate the public. My confidence in confronting other’s assumptions about autism is also growing. The more I understand myself, the more comfortable I am in educating others. Maybe there is a correlation between the two.

Eventually, I will catch up with the DSM. I’m a high-functioning autistic (there is also a debate about the low, middle, and high functioning classifications).

The only way to change incorrect assumptions is to confront and counter them. Asperger’s was my introduction to what makes me tick. And it will be the pathway to accepting my formal diagnosis.

Whatever your take on the labeling debate, patience and consideration should be at the heart of it. Those who continue to call themselves Aspies have their reasons. And those who decided to make the switch have their own set of reasons.  

As humans, we spend our lives struggling with our identities. For many late-diagnosed women, the road to understanding our differences is a long one. Society makes autistic life difficult enough as it is. Let’s give each other a break and the space to explore our identities and our world in the ways that work best for ourselves. At our own pace, we will embrace this piece of our identity. More than a year has passed since my diagnosis, and I’m still trying to embrace it. Let’s allow each other to do it at our pace because each of us is different – and so are our experiences.