Being a mother is learning about strengths you didn’t know you had…and dealing with fears you didn’t know existed.

Linda Wooten

It’s no secret that working moms have exceptionally high standards placed on them.

Society judges us if we give anything less to our children than a stay-at-home in the 1950s. We must justify our ability to raise children, keep house, and be great employees to ‘earn’ the privilege of having a job – and avoid shame.

It’s an impossible juggle of expectations. We’re expected to do it all.

I remember when I became a first-time mother – I didn’t want anyone to know how much I struggled. I thought it was supposed to ‘come naturally.’ With every meltdown, I felt like a failure.

Good mothers did everything. And LOVED it!

That’s what all the doll commercials told us growing up. It’s easy! You’re a natural because you are a girl.

I hated playing with dolls. But I digress.

The shadow of grey clouds marks my memories of my son’s first few years. I never had time to recover from all the new day-to-day demands and felt guilty for even thinking of taking time for myself.

It’s crazy how much a diagnosis can change your life. Once I understood why I couldn’t keep up with work, children, playdates, birthday parties, and other demands of life, I could be forgiving of myself.

The autism diagnosis started my journey to self-awareness. Instead of looking at everything I was as “wrong,” I began to look at myself with acceptance. The more I learned about myself, the more I crafted my life around my needs to be a better mother.

This self-awareness has allowed my strengths as an autistic mother to float to the surface. And my children have benefited from it too.

I need a set routine and schedule.

Sometimes my husband calls me at work and asks if I can run by the store on the way home. And he waits quietly for my answer. He knows my weekly schedule is set in stone. Any changes to it will disrupt my focus and, depending on my state, push me into the overwhelmed zone.

I process this and do an inventory of how I feel. Can I handle it? How do I feel about it?

Sometimes the answer is, reluctantly, yes, but sometimes it’s no.

When I start a week, I need to know the schedule. When too many variables are at play, I am overwhelmed. It’s also essential that every day of the week follows the same routine. So, every Monday looks the same – the same schedule, routine, and set of demands.

This is how I avoid cognitive overload. Because I stick to a routine and set schedules, I have more energy to deal with things that pop up “out of the blue.”

I’ve also learned how much my children rely on our routines too. Because of my need for routines and schedules, my children know what to expect daily. They know what days they have after-school activities. They know Saturday mornings are for leisure and recovery.

They know what is expected of them every day.

The assurance is especially important for my autistic son, who is still learning to be aware of his needs.

Routines bring a sense of stability and security for autistic moms and children.

Everyone has limits – including me.

This one is difficult for the nonautistic women I know. They push their boundaries by overloading their children’s schedules. But they can push further than I can. This is something I’ve had to accept. It takes work. There’s so much pressure to be involved in school activities, birthday parties, playdates, etc.

I’m pulling the brake when other women are still running their engines.

And that’s okay. Because I know I will suffer cognitive paralysis if I push too far. When I’m overwhelmed with commitments and demands, I shut down. I can’t move, think, or speak. I go into zombie mode, which isn’t a good place to be.

So, I avoid overloading our schedules, which prevents me from overloading my brain. Most importantly, I purposely build in time for recovery based on the energy I’m using. (Spoon theory, anyone?)

While schedules are good for children, overscheduling them isn’t. I know a few nonautistic moms like this, and they are burned out. Shuttling their children from one place to the next and running through fast food drive-thrus occupy the bulk of their week outside work.

All moms need a breather. And children need self-directed free time. Boredom breeds creativity. As with all things, balance is vital. By knowing my limits, I can give my best without the increased anxiety of unending life demands.

I self-advocate for my needs.

At home, this means pushing back when others ask for more. It means being honest about and speaking up for your limits. The plus side? Your children will learn to speak up for their limits too.

If my husband had it his ADHD way, we’d be active 100% of the week. He. Doesn’t. Stop.

Sometimes I tell him, no; I’m out of steam. Other times I speak up and voice my need to “not be needed” for a while.

Quality time alone in a silent environment with a hobby is necessary for me to recover from overwhelm and avoid a sensory meltdown. I’ll leave the kids with him, head upstairs, and lock myself in my craft room for a few hours.

It’s also important for my children to witness boundary-setting and self-advocacy.

I prioritize what needs to be done based on my available energy.

Every day has a routine and schedule. Top priorities like feeding my kids are included, of course. But some days, I get home and have little energy left, so I tackle something else on the priority list. A load of laundry gets folded, or I sweep the floor.

To be direct – the house is never spotless. I do things when I can. And so does my husband.

We are not perfect parents, but we are the best parents we can be.

I’ve let go of guilt – mostly.   

Autistic women don’t fit into a societal mold, not in the workplace, social settings, families, friends, and not as mothers.

So, why try?

Accepting myself means accepting all of me, including the way I parent.

Sometimes I feel guilty that I can’t be more like nonautistic moms. The playdates, volunteering at school, and letting my children join any activity they wanted, no matter the time commitment.

But I’ve grown secure enough in my strengths to be okay with my limits. Brushing off the guilt gets easier.  

My children are happy and well taken care of. They are loved – and know it.

No one has all the answers, especially about parenting. But we could do with a little less judgment and more support.

Just because parenting looks different with an autistic mom doesn’t mean it isn’t quality parenting. All moms, autistic or not, must extend each other more grace. It’s impossible to believe that anyone can do it “all.” And there is a lot we can learn from each other if we only take a moment to listen.

What are your greatest parenting strengths? What helps you? Please share it in the comments below!

Facial expressions are a form of non-verbal communication that accompanies a verbal message and can help convey the intent behind the message and the speaker’s emotional state. In short, it rounds out the complete picture for the receiver. And for neurotypicals, a conflict between a person’s words and facial expressions can lead to misunderstandings.

For autistics, this conflict is a way of life. We often rely on words only to communicate.

There is a stereotype that autistics can’t produce or read facial expressions, which isn’t true. Let’s take a look at what it really means to be autistic when it comes to facial expressions and where the challenges lie:

Autistics are not the “expressionless robots” we’re assumed to be.

We can unconsciously produce facial expressions, though it’s less frequent than neurotypicals. People around us may expect to see a facial expression only to be met with an expressionless face. When we do produce them, they can be inappropriate or ill-timed.

The “wrong” facial expressions can cause further challenges in communication. You aren’t – essentially – speaking the same language. The differences, though subtle, can make other people feel lost about your emotions.

But the challenge is…

We don’t know what our faces are doing.

I have memories of being scolded for rolling my eyes as a child. But I didn’t know that I rolled my eyes. I wasn’t annoyed or irritated. So, why did my eyes roll? Probably because I didn’t know what my face was doing.  

Unintentional eye rolling is only one of my unconscious facial expressions. Another one, my “resting face” is often confused for anger or irritation.

My face and tone of voice never clearly expressed my excitement about a new gift when I was a child. And the list goes on.

Feeling one way but being read by those around you another way is a way of life for us. We often catch ourselves apologizing for confusing people about our intention and feelings.

Like all autistic traits, the ability to produce facial expressions and their accuracy can vary from one autistic to another. Some are relatively expressionless, and others’ abilities are so similar to neurotypical expressions that a difference is hardly noticeable.

Some of us do mask our facial expressions.

As an autistic woman, I know society expects me to be more expressive and bubblier than a man. I also want to avoid being misunderstood.

“The world still has no space for eloquent women with flatter facial expressions.  I am aware that autistic men share this trait with us, but time and time again, including in my own family, I have seen this trait excused and overlooked in brilliant men.  Apparently, this sort of intensity in a man is not as threatening.” – Wendy Katz Erwin

The social expectation that women are emotional and expressive places an additional burden on autistic women to mask their non-verbal communication. A man is respected and confident if his face remains firm during a conversation. A woman, however, is thought to be rude or a bitch if she doesn’t smile.

So, like many autistic women, I actively monitor my face during social situations. At times I’m so caught up in the conversation and suddenly realize I have no idea what it looks like. I have to take a survey of everyone else’s faces and adjust mine to copy them.

“Oh, they are all smiling. I better smile, too.”

For most of my life, I thought everyone consciously monitored their faces. It’s like a tiny film director in my head – “Okay. Smile……NOW!”

This little voice calls out directions throughout an entire conversation. It’s exhausting to monitor my face while processing a conversation and saying the right things.

Apparently, neurotypicals don’t actively monitor their faces like us.    

We can’t always read facial expressions which can make masking tricky.

I can read some facial expressions but it’s a conscious process and limited to obvious expressions like smiling, laughing, and crying. Reading faces is limited to extremes or a resting face. Everything else is difficult to interpret.  

Eye contact – or lack of it – also comes into play. Every autistic has a different comfort level with eye contact. For me, it hurts to look people in the eyes, making it harder to read people’s faces.

Even with masking, we are unable to completely hide our difficulties with nonverbal communication. So, we lose friends (or can’t gain them, to begin with) and aren’t hired for jobs. Just think of the issues this can cause in an interview.

For fun, I’m throwing in the most anti-autistic career interviewing advice article. It even has a section dedicated to – dum, dum, DUM! – facial expressions. Go figure.

Obviously, there are no easy solutions beyond awareness and getting to know someone. If you’re interviewing someone with limited facial expressions, push past your initial reaction. Recognize that not everyone will be as expressive as others. Listen, instead, to their words. And if you are in a relationship with an autistic, get to know them. You will eventually understand how they share their feelings beyond facial expressions.

As autistic women, communicating is difficult, but we want to socialize and have friends and jobs. We don’t want to hide who we are all the time. For neurotypicals, communicating with an autistic isn’t easy. But communication is a two-way street. You will only discover the benefits of having an autistic coworker or friend if you make an effort.

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.

Along with my autism diagnosis, I received another diagnosis: depression. 

I don’t remember when I started my personal battle with depression. It always seemed to be there – like those memory balls on Inside Out tinged with the color of emotion. Most of my memories are tinged with blue. 

It was a constant companion. 

Since my mother was abusive, therapy in childhood was never an option. As an adult, I entered therapy on and off again – when I had the money and time. It didn’t matter when I went or who I saw; their answers were the same: take an antidepressant. 

But medication didn’t work for me – it made my depression worse. 

It wasn’t until my autism diagnosis at the age of 39 that I discovered the truth about my depression. The antidepressants didn’t work because the depression was related to how I interacted with the neurotypical world. 

Here are some statistics from the Autistica site to consider: 

1. More than 5 in 10 autistic adults have had depression.
2. Autistic adults (without an intellectual disability) are over nine times more likely to consider suicide than the general population.

For many autistics, depression can stem from our interaction with a society that doesn’t accept us for who we are and requires us to hide our autistic traits. 

Masking

Masking is what autistics do to hide or suppress our autistic traits and, speaking for myself, is the most significant contributing factor to depression. Although masking occurs in both women and men, it is found more often in women, which may explain why girls are undiagnosed. Hiding our autistic traits makes it more difficult to diagnose us. 

Girls and women feel pressured to be more social and often mimic other girls or women. Speech patterns, tone, inflection, body language, special interests, etc., can be masked to a certain extent.  

You probably wonder what this has to do with our depression discussion. Well, several things.

Let’s start here: 

1. Masking is an exhausting process. 

I’ll start with a conversation between two people: one neurotypical and one autistic. For neurotypical people, much of their unspoken social cues are automatic. But for the autistic person, most of the conversation is a conscious effort. 

As described by Healthline, “Masking consumes huge amounts of energy. In a 2016 study, Trusted Source, women who used masking to satisfy neurotypical standards said they felt exhausted by the constant effort.”

The neurotypical can focus on the conversation and give little attention to everything else. Not only does the autistic person try to participate in the conversation, but they must also actively regulate their facial expressions and body language while also monitoring the flow of the conversation and the topic covered. 

While attempting to focus on what is said, we are also processing this in our heads: 

• What are my arms doing? Are they crossed? 
• Am I looking at the person? 
• Is that a pause for my turn to talk? 
• Was that a joke? 
• She made a weird face. Is my tone off? 
• Perhaps I should nod my head, so she knows I’m listening. 
• And much, much more. 

This extreme exercise in mental processing and multitasking is exhausting. 

The overwhelming burden of masking while socializing can often lead autistics to take breaks from socializing or avoid it altogether. This can increase our isolation and decrease our ability to make friends, both of which influence our levels of depression. 

2. Masking means we are living a lie and not being our authentic selves. 

Growing up without an autism diagnosis made me feel like I was leading a double life. And many autistics – especially the late-diagnosed women – feel this way. 

To be socially accepted, we must pretend to be someone we are not, but the mask we put on is at odds with our authentic selves. 

The more pressure we feel to mask our authentic selves, the less we know about ourselves. 

When I received my diagnosis, I felt like I had to look in the mirror and introduce myself…to myself. I didn’t know who I was and finally understood why. But, more importantly, how could I expect others to accept me for who I am if I don’t know who I am? 

When you feel that you must constantly hide who you are from the world to be accepted, your mental health will suffer. We need deep connections with friends and family to feel like we belong. 

Communication Misinterpretation

Our communication style is quite different from neurotypicals. We are more direct, blunt, honest, and don’t pick up on the smaller unspoken social cues like tone, body language, and facial expressions. It’s not uncommon for an autistic’s body language or facial expression to be mismatched with our emotional state or the tone of our voice. 

Think about it: If you can’t effectively decipher social cues, you can’t effectively use them. Mimicking others can only go so far.  

This apparent mismatch can cause neurotypicals to misinterpret what we are saying. 

For a quick example, let’s look at the response to unwrapping a gift. I can be thrilled about my gift, but my neutral face and flatly delivered “thank you” will undoubtedly, be misinterpreted as not happy with the gift. My parents accused me of not showing enough excitement and appreciation for gifts as a child. “You’re being rude,” was often said to me by my mother. 

Now, when I receive a gift, I consciously make an effort to express my gratitude outwardly. But this is hard. Am I overdoing it? Do they understand how excited I am? Do I come across as fake in my enthusiasm? 

Even when masking, our autistic traits can sometimes leak through. And in a highly standardized world, our differences make us stand out from the norm. We all know what happens if you aren’t ‘normal’ enough. 

Being different or ‘weird’ makes you a target for bullying and gossip.  

Because our brains don’t work ‘normally,’ we can often be told that our actions, words, and thoughts are wrong. 

Believing everything you do and say will be wrong can cause you to hold back and not participate in life and significantly affect your self-confidence. 

Autistics struggle to balance masking for acceptance and maintaining our authentic selves. We need access to appropriate mental health services to help us through these issues and depression.  

More than anything, we need affordable access to therapists specializing in autism. Therapists with the expertise to support adult women are hard to come by (there are only three in my city) and very expensive. 

More than anything, we need affordable access to therapists specializing in autism. It’s not uncommon for autistic adults – especially women – to be misdiagnosed with depression, and the source or reason for that depression is completely missed, overlooked, or ignored. Medications may help some, but we also need support in addressing the underlying causes of depression and anxiety related to our inactions in society.

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?

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.

Just like most things in our society, we’ve structured the employment process around neurotypical social skills. Unfortunately, autistic social skills do not align with these expectations. It’s disheartening to read in Forbes that “a staggering 50-75% of the 5.6 million autistic adults in the U.S. are unemployed or underemployed.” 

As an autistic, I know how difficult it is to get–and keep–a job. We are expected to transport ourselves to a neurotypical world 8 or more hours every day. So much of the employee experience operates against brains on the autistic spectrum. This includes the social skills needed to maintain long-term relationships.  

Most workplaces are ripe with social nuances. Learning and participating in them can improve career success. But operating in an environment that runs counter to our innate social skills inhibits our ability to succeed in the workplace. 

Companies are not prepared to shift the current formula for success to include autistic employees. It would require an overhaul of the entire hiring and promotion process.  

Autistic employees don’t “fit in.” 

As the saying goes, it isn’t what you know, but who you know. Networking begins the day you start your new job, and the first step in this process is to build relationships with the coworkers you see every day.

Inter-office relationships are challenging to build. Think about it. Our coworkers must interact with us every day, even if we aren’t, shall we say, their cup of tea.  

As Marcia Scheiner said in her book An Employer’s Guide to Managing Professionals on the Autism Spectrum, “Although autism is considered a ‘hidden disability,’ the observable behavior of colleagues with autism is often described as annoying, odd, rude, and uncaring. While many people on the spectrum may want to socialize with others, their social-skill deficits can make these interactions awkward.” 

Basically, our coworkers don’t see why autistic employees socialize the way we do. Instead, they experience autistic traits that are difficult to hide, and misinterpret them. To them, autistic coworkers are awkward. In response, they may limit their social interaction with their ‘awkward’ coworkers. They will avoid inviting them to lunch or stopping by their cubicle for a quick chat.

Sometimes, autistic employees will be the subject of water-cooler gossip and inter-office bullying. Autistic employees may see the restricted interactions by others. And, recognizing that they are not included in the inter-office relationships building up around them, can cause autistic employees to further withdrawal from office interactions.  

That autistic employees don’t “fit in” according to neurotypical social expectations. In the workplace, this can hinder our ability to keep jobs and promote. 

Autistic individuals’ strong sense of fairness works against the social expectations of the workplace.

Probably the first thing young adults learn when entering the workforce is that hard work isn’t enough to push them through the ranks. Mastering inter-office politics is a skill needed to succeed. 

Unfortunately for autistic employees, it isn’t that simple. 

We can’t wrap our heads around the unfair concept of hiring and promoting based on favorability instead of job skills. Favoritism is “when a person (usually a manager) demonstrates preferential treatment to one person over all of the other employees for reasons unrelated to performance,” as defined by Susan Lucas.

Being the boss’s favorite usually means better annual reviews and raises, the first choice of projects, and improved chances for promotion, even if the favored employee’s work is mediocre. This does not sit well with autistic employees.

We can’t see the purpose of the favorability over work quality and skill.

Office politics is a challenging concept to grasp. In addition to favoritism, employees need to learn to read social situations – not a natural skill for autistics. When should an employee be honest with my boss and when should I tell the boss what they want to hear instead? What does the boss want to hear instead of the truth? Why can’t I be honest?

“Office politics and ‘sucking up’ to the boss are not in (an autistic woman’s) social toolbox and this can cause others to dislike her socially, despite being skilled at her job.” – Sarah Hendrickx, Women and Girls with Autism Spectrum Disorder

Between our social skills and inability to navigate office politics, we are not held favorably in the eyes of bosses. Unfortunately, some bosses will do more for the “socially favorable” and find reasons to drop the “socially unfavorable.”

Autistic employees can do a few things to help maximize their success in the workplace.

Office politics won’t go away. Depending upon the job, some inter-office politics and social skills will always be required to maintain employment and promote. But there are things autistic employees can do to support themselves.

1.      Choosing careers that align with our strengths and preferred working environments.

Choosing a career that doesn’t heavily rely on social skills and aligns with our strengths can improve our chances for success. Also, understanding the type of working environment can maximize our resiliency.

“The main problem for most of us (autistics) is that we have a hard time holding onto jobs for social reasons. I cannot stress enough how important it is to work with your strengths and acknowledge your triggers – things that push your autistic buttons – so that you choose the right career path.” – Rudy Simone, Aspergirls

An office environment may not be the best place for some autistic people. Fluorescent lights, cold temperatures, white-noise machines, and impromptu hallway meetings can grind on our senses. Working from home may be more appropriate for some.

I know an autistic person that loves food and can hyper focus on cooking. He is now a chef. The hustle and bustle of a commercial kitchen gives him the excuse to avoid most socializing. Hyper focusing on the plate in front of him propels him forward.

We can increase our chances of success by pursuing opportunities that align closely with our needs and strengths.

2.      Become a Subject Matter Expert (SME).

Generally, autistic individuals can focus intensely on a subject; often researching it until fully knowledgeable. We love details. Understanding the details gives us some level of control and order in the subject. Typically, self-learning is an autistic strength.

These skills can help us become SMEs. Thus, becoming a source of valuable information for coworkers. 

Professional conversations are a great opportunity to know someone. As subject matter experts, we can share valuable knowledge with coworkers and build a rapport through these interactions.

Autistics find small talk challenging but can talk endlessly about areas of interest. These types of interactions involve less pressure to socialize casually. The focus is on the professional subject matter, not the weather or what-was-Pam-thinking-wearing-that-outfit-to-work gossip. 

Building a reputation as a “go-to” person across departments can help boost your career internally. Leaders talk. Make sure they are talking about your skills and expertise. 

3.     Find a mentor.

There are many benefits for anyone–autistic or not–to having a professional mentor. A mentor can shorten the learning curve, help mentees navigate the office environment, and improve their professional network. 

Many companies offer mentorship programs. Autistic employees can benefit from the professional support an inter-company mentor can offer. The one-on-one support for autistic employees can be invaluable.

We all have the right to pursue career ambitions and earn a living. Unfortunately, the workplace wasn’t built with an autistic or neurodiverse brain in mind. It doesn’t mean that autistics can’t be successful in the workplace. Being more purposeful and self-aware can help us align our career goals and working environment to our strengths.

My gynecologist said it first. But she was not the last. Everyone I discuss my diagnosis with has a similar response:

“You don’t look autistic.”

What do people expect to see when they look at an autistic person?

Autism is so integral to who I am that their disbelief is hurtful. I was diagnosed with autism at 39. I’ve spent my life never quite fitting in with the world around me. Late diagnosed autistic women like me float around the fringes of social circles. Too “weird” to be included in the friendships forming around us.

For me, a diagnosis ushered in a new level of self-understanding. I had hoped it would help those around me understand, too. Instead, they met me with disbelief. It seems I can’t do anything right. I am too weird to be normal but not autistic enough to be autistic?

Scenes like the one with my gynecologist are not unusual for late-diagnosed women. It’s a common theme. We are not believed. So, why is that? Why are people in disbelief when we have a professional diagnosis in hand?

It all boils down to their perception. 

The Public’s Exposure to Autism

The reality is that most people’s exposure to autism is limited to the entertainment industry. Production companies have this incessant desire to limit the portrayal of autistic characters to a single set of characteristics.

Early segregation of autistic people in schools and the workforce also hindered the public’s exposure. With so few opportunities to be exposed to individuals on the autistic spectrum, it’s no wonder most people lack understanding.

And I find it hard to blame them. Even I knew almost nothing about autism until I considered it as an explanation for my son’s social difficulties. 

The portrayal of autistics in the entertainment industry, coupled with early autistic segregation and research, fueled false stereotypes. These stereotypes seem to be the only exposure or awareness the public has to autism. 

Stereotypes

Our brains look for patterns. We categorize people, concepts, and things into little boxes. And this is how stereotypes are formed.  

Stereotypes are often based on inaccurate information or negative experiences with members of a particular group. Stereotypes are assumptions; and when we assume something about an individual, we don’t give them a chance to show their colors. Basing our interactions with them on assumptions can cause us to place unwarranted and, sometimes, discriminatory obstacles in front of them. 

Here are a few pervasive stereotypes that plague autistic individuals, more so late-diagnosed autistic women. (Please note that these stereotypes can hurt any autistic individual. I’m only focusing on those that have a profound impact on late-diagnosed autistic women because it is my experience.)

It’s a Boys’-Syndrome

We base much of our medical knowledge on research conducted on males. For example, did you know that heart attack symptoms are different in women than men? You’d think that is an important distinction we need to be aware of, right? But heart attack research is based on men’s experiences. I didn’t realize this until I ran across an article about many hospitals turning away female heart attack sufferers.

The article found me at a time when I was researching autism as an explanation for my son’s social struggles. My son and I have similar behaviors and personalities. But he checked all the boxes for autism, and I didn’t. 

After reading the heart attack article, it occurred to me: maybe autism is different for girls. Researching ‘autism in girls’ instead of ‘autistic traits’ was enlightening. I managed to track down a few articles discussing the ways autism expressed differently in girls. Finally, a checklist of traits I could relate to. 

Early researchers focused on autistic characteristics as they are expressed in boys. This caused diagnostic tools to be created with male autistic criteria–not girls.

“Research that investigates and differentiates the male and female profile, presentation, and experience of autism is fairly scarce, perpetuating the myth that autism is a significant male-dominated condition, or that gender is simply not a consideration,”

–Sarah Hendrickx, Women & Girls with Autism Spectrum Disorder

Despite the advancements in autism research, many of the old assumptions still plague the public’s perception of autism as a boys’-syndrome.

Autistics Lack Empathy

This one is particularly damaging to female autistics. Empathy is one of those ‘motherly’ and ‘nurturing’ characteristics society expects women to have. We feel the pressure of expressing empathy in the ‘right’ way at the ‘right’ time or risk being viewed as cold-hearted. 

Late-diagnosed autistic women have learned the behaviors and responses we ‘should’ have to express empathy. Our social interactions instruction manual in our heads usually includes an entry to guide us through situations when an expression of empathy is warranted.

What people need to understand is that we do feel empathy, we just don’t know how to express it or connect with it. Often, our lack of experience with another’s situation prevents us from feeling empathy or expressing it in the expected way. Making the conscious effort to play out a similar scenario in our heads using ourselves and family members to play the parts can help us jump-start our emotional responses. We can empathize when can ‘live’ the experience.

We must imagine ourselves in the scenario or respond with the words or phrases society expects from an empathetic person. 

Also, society is more lenient with male’s lack of emotional response. Men are allowed to be aloof and less emotional. Autistic men may appear to be without empathy – because they struggle to express it – but they don’t put in the extra effort to mask that struggle.  

The point is: we do feel empathy. But the extra work we go through to either relate or respond correctly skews the view of those around us.

Because I show empathy, people don’t believe I’m autistic.  

Adults Don’t have Autism

If you are a recently diagnosed adult autistic woman–like me–you have many stereotypes working against you. Since autism is often diagnosed in childhood, there is little research, and therefore understanding, of autism in adults. 

The misconception is if we weren’t diagnosed as a child, then we aren’t autistic ‘enough.’ 

Unfortunately, it’s not general knowledge that autism was never considered as a diagnosis for girls. Many girls grew up coping with it as we went along and wrongly diagnosed with other conditions. Unlike most autistic boys, we devoted a substantial amount of energy to masking (aka camouflaging) our autistic traits to fit in. 

People in our lives are used to the masked interactions they have with autistic women before hearing a word about autism. I can imagine it’s difficult to wrap their minds around that fact that we aren’t being our true autistic selves and only saw the person we pretended to be. 

Sarah Hendrickx said in Women and Girls with Autism Spectrum Disorder, “… women with autism are a lot more ‘autistic’ than they look,” and “The majority of these [autistic] women are getting through each day with an often sophisticated set of compensatory behaviours, personas and clever strategies for avoiding certain situations without anyone knowing [they are autistic].”

Because of the lack of research on autistic expression in girls, we flew under the radar. We hid our experiences and autistic traits. Now as doctors diagnose our children, we see the similarities and wonder… could I be autistic, too? Today, doctors look at both parents to determine the hereditary source.

An entire generation of autistic women are just now discovering who they are and sharing their stories.

The rise in women receiving diagnoses has also increased awareness for autistic adults. Autistic children don’t outgrow autism. Autism is in the very fabric of our being. We are and will always be autistic. Perhaps our ability to hide it in a neurotypical world improves as we grow into adulthood, but we will always be autistic.

What can we do about the stereotypes?

Foremost, let’s share our stories. Let’s talk about why we don’t fit the stereotypes. Let’s talk about autistic people as individuals: each just as different as the next. The more we share our experiences, the more opportunities we give others to learn.

It can frustrate and exhaust us to push through the barriers others set in front of us because of their assumptions. Finding the patience and courage to push past them and speak up is essential. Autism isn’t a dirty word. Being on the autistic spectrum isn’t a curse. Speaking about the individualism of autism can help reshape people’s understanding and perceptions. It’s called a spectrum for a reason. Each individual’s autistic characteristics are expressed at different levels. 

“If you’ve met one individual with autism, you’ve met one individual with autism.” 

— Dr. Stephen Shore

It’s time to throw autistic stereotypes out the door. By sharing our stories, we give people a chance to see just how different we are from each other. 

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.