Why Do Some Autistic People Seem Self-Absorbed?

A common and sometimes unspoken myth about autistic individuals is that they are self-absorbed. Some non-autistic folks complain that the autistic people in their lives always find a way to turn the conversation back to themselves. Others imply or state outright that autistic people are egocentric or even narcissistic.

The myth is deeply rooted in autism’s history and involves misunderstandings of the different ways that many autistic people think, socialize, and experience the self.

While an autistic person’s ways of relating to others and to the world around them may appear self-centered or self-absorbed, egocentricity and preoccupation with oneself are not characteristics of autism. In fact, more often than not, an autistic person living in a neurotypical world has low self-esteem and does not always have a strongly formed self-concept.

Let’s look at three reasons for the development of the self-absorbed autistic person stereotype.

1) The Idea of Autistic Self-Absorption Dates Back to the Origin of Autism

The word autism has “self” built right into it, so this stereotype is rooted in the very beginning of the concept of autism. The Swiss psychiatrist, Paul Bleuler, coined the New Latin term autismus around 1910 to describe what were mistakenly thought to be symptoms of schizophrenia.

“Autism” comes from the Greek autos, meaning “self” while ismos refers to an action or state of being. So “autism” literally means a kind of intense self-absorption.

Bleuler meant for “autism” to refer to “autistic withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance.”

2) This Myth, Like Many Autism Myths, Is Based on Incorrect Judgments of Autistic Behaviour

Unfortunately, Bleuler’s notion of autism continues to inform views on autism today. And like many other incorrect or over-simplified ideas about autism, it is based on a non-autistic person’s judgment of autistic behaviours and says nothing about the reasons behind the behaviours themselves.

Autistic people, while usually described as introverted and tending to get “lost in their own world,” can be extroverted and quite socially-motivated. And those who retreat inward do so because they are overwhelmed by the sights and sounds of the world around them. Autistic brains are built for deep, detail-oriented processing of information and do not focus on one or two main stimuli in the way that non-autistic brains do. There are pros and cons to both forms of information processing, yet we live in a world that far prefers the second way.

As a result, social and cultural events, entertainment, and even cities themselves are designed with the non-autistic brain in mind. This often leads to an environment that is too loud, too bright, too harsh, too hectic, and too fast-paced to allow for a sense of safety and equanimity for autistic people.

In short, the need to retreat is triggered far more quickly and easily for most autistic people when compared to non-autistic people. This leads to behaviours often seen by non-autistic people as “running away to their own world.” While a non-autistic person might see “self-absorption” in this tendency to retreat, the autistic person finds deep, almost meditative focus and a rich cognitive landscape when they are alone or with a small group of close friends.

Retreating to their studies or special interests is often experienced by autistic people as comforting, even blissful, and intensely satisfying. Many autistic individuals are also often driven by an altruistic desire to help humanity, and their special interests may be in medicine, psychology, science, social justice, engineering, or other topics that they wish to help improve for the benefit of all.

3) The Autistic Self-Concept Is Often Very Different Than the Non-Autistic Self-Concept

Imagine a scenario where two people are having a conversation — one individual is non-autistic while the other individual is autistic. The non-autistic person might describe a difficult situation they have recently experienced, perhaps in at attempt to receive advice or just a listening ear.

While many autistic individuals are described as wonderful listeners, and indeed many autistic people end up in helping professions that require finely tuned listening skills — like therapists, psychologists, and social workers — some are more inclined to share their own stories or anecdotes in response. For example, autistic individuals might respond by talking about a time when something similar happened to them.

This may come across as turning the conversation and attention away from the non-autistic person and toward the autistic person, but this is almost never the intention or motivation of the autistic person.

For the autistic person, the self is often viewed more objectively, as an object that can be held up for close examination or as a kind of ongoing qualitative experiment. And they often study their experiences (or the cognitive and emotional impressions resulting from those experiences) very carefully, analytically, and with more attention to detail than non-autistic people are accustomed to.

Autistic people would likely speak just as passionately about the experiences of others if they had the same level of direct experiential insight into others’ lives and minds as the autistic person does with their own.

In most non-autistic circles, however, being so analytical about the self or being overly forthcoming with one’s life experiences is seen as odd, unwanted, or…self-absorbed.

As with most things, it’s all about perspective.

Introducing Our Provider Directory!

Introducing our global directory of autism psychologists and other healthcare providers who are trained in diagnosing autism in adults, and specifically autism in women and those who identify as female.

This list was compiled through recommendations from patients and submissions from psychologists and other healthcare providers through the private Facebook group, Female Autism Conversation.

If you would like to be considered for addition to the directory please contact us.

5 Signs You May Be an Undiagnosed Autistic Woman

Many girls, women, and those assigned female at birth (afab) are diagnosed much later in life than their male peers. While this is slowly starting to change, many healthcare professionals — including therapists, psychologists, psychiatrists, doctors, nurses, social workers, and so on — are not well-trained to recognize less obvious presentations of autism.

Once called high-functioning autism or Asperger syndrome, “level one” or “mild” autism can be particularly difficult to diagnose — unless you know what to look for.

Identifying with any or all of the following does not necessarily mean that you are autistic. Autism is a genetic neurodevelopmental difference, meaning that you are born with it. You cannot “catch” autism or develop it later in life. If you are autistic, you would have had signs of autism as a baby and young child.

Here are 5 signs that you might be on the spectrum:

1 — You Were Labelled as “Highly Sensitive”

Elaine Aron coined the term “Highly Sensitive Person” or HSP to describe someone with a unique cluster of emotional, physical, and sensory sensitivities. Her description has led many to wonder about the similarities between HSPs and those who are autistic.

People who exhibit the Highly Sensitive Person trait:

  • Are easily overwhelmed by sensory stimuli (bright lights, rough fabrics, loud sounds, etc.),
  • Are highly affected by the moods of others,
  • Experience very strong emotions (both positive and negative) and have a rich emotional life,
  • Are highly conscientious and detail-oriented,
  • Have a difficult time coping with change,
  • Love to learn for the sake of learning,
  • Require a lot of time alone in order to recharge,
  • Get sick easily (especially when a lot is going on in life or after travel), take a long time to heal or “reset” after a traumatic or upsetting event,
  • Dislike small talk but can pretend to like it when “necessary”,
  • Can exhibit startlingly intense focus on subjects and tasks that they love (i.e., special interests), and so on.

Aron, who also identifies as a “Highly Sensitive Person,” is very likely describing a large group of characteristics of autistic people, and specifically autistic people with so-called “mild” or “level one” autism.

(Aron was emailed for this article about HSP and autism, but never responded. Her avoidance of the autism community and unwillingness to properly address questions about HSP and autism is unfortunate, since her work could help destigmatize autism and challenge the deficit model of autism. She presents the HSP trait as being a great yet challenging gift.)

2 — You Prefer A Lot of Time Alone or With Only One Person at a Time

Autistic women and girls were typically labelled loners in childhood. They may have shown major interest in and love for people starting early in life, but could only take being in the presence of others in small doses.

This is not because autistic people hate or dislike others. Being around several people can be overwhelming both sensorily and cognitively for an autistic person, so they need a lot of time alone to recharge and pursue their special interests. People who are not autistic are usually not as interested in certain topics to the same extent and may even tease or bully the autistic person because of their deep curiosity and interests.

Autistic people often experience bullying or cruel teasing starting early in life, so they learned that it was easier and more calming to spend time away from others. This often gives others the perception that the autistic person is shy or introverted or strange. While many autistic people do identify as being introverted, some autistic people are actually extroverted, love to talk, and are energized from being around others.

Autistic people DO have friends and create STRONG BONDS with their loved ones. Some autistic people experience friendships and relationships more intensely than non-autistic people.

Most autistic people are fine being alone for long periods, and when they are with friends the discussion tends to be complex and deep (often philosophical in nature, examining the “big” questions). And when discussion is not the focus, autistic folks love to partake in their special interests with their friends.

Conversations with more than one or two other people can be overwhelming for autistic people. Their brains notice and take in more detail, and thus are more easily overwhelmed. For this reason, autistic people tend to prefer hanging out with only one or two other people.

3 — You Likely Work in — or Have Special Interest in — Art, Psychology, and/or Science

Autistic females, in particular, are often very imaginative, artistic, and highly capable in the arts. This can include interest and talent in writing, painting, drawing, sculpture, singing, acting, theatre, music, and so on.

Autistic brains tend to be very detail-oriented, leading to a tendency to be very good at science and analytical thinking. Whether or not an autistic person ends up in the sciences (and especially a career in science) largely depends on their upbringing and influences. Those who had the advantage of receiving good education and had the resources to attend post-secondary school often excel in academia.

One common area of interest for many autistic females is in psychology. Since they grew up feeling different from everyone else, they often look to psychology for answers — often reading self-help books and psychology texts long before their peers. For many, this leads to independent study and the development of a special interest in psychology.

Several choose careers that are related to psychology in some way, either as researchers, psychologists, therapists, school counsellors, or social workers.

While autistic people can be interested in a diverse range of career fields, they are over-represented in the arts, sciences, technology, and in psychology. Their traits and strengths may be especially well-suited for academia, and many find themselves to be lifelong learners — interested in pursuing formal and/or informal educational opportunities throughout life.

4 — You Have Probably Been Diagnosed with Anxiety, Depression, PTSD, BPD, or Similar

Late-diagnosed autistic females are often first diagnosed — or misdiagnosed — with anxiety, depression, post-traumatic stress disorder (PTSD), borderline personality disorder (BPD), bipolar disorder, obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), eating disorders, and/or phobias.

Even after significant amounts of therapy and receiving these kinds of diagnoses, the undiagnosed autistic person often feels that something is still missing. They may keep jumping from one therapist to the next, but without showing significant improvement or increased satisfaction with life. Suicide ideation and suicide attempts are very common in the female autistic population.

Unfortunately, many healthcare professionals — including therapists and those who specialize in autism assessments — do not receive enough education or training to be able to identify more “mild” presentations of autism. For this reason, autistic women are usually not diagnosed until adulthood. Their difficulty with fitting in, lack of answers, and lack of understanding from others often leads to the development of mental health concerns.

While these diagnoses may be correct and can overlap with autism, they are all too often incorrect or partial. They do not represent the full scope of what the individual is going through.

5 — You Have a High Chance of Having Allergies, Autoimmune Disorders, Fibromyalgia, and/or Connective Tissue Disorders

For many women and girls, an autism diagnosis is preceded by a long history of health issues. Many have digestive problems, connective tissue disorders like Ehlers Danlos syndrome (hypermobile type), food and environmental allergies, and autoimmune disorders.

Many late diagnosed autistic individuals were diagnosed as having irritable bowel syndrome (IBS) or fibromyalgia on account of having frequent gastrointestinal issues and chronic pain, respectively.

A recent study found that autistic people have a much higher rate of the most common autoimmune disorders, with psoriasis appearing far more often in autistic people than in non-autistic people.

I think I might be autistic. What now?

If you think you might be autistic, find a psychologist in your area who specializes in autism diagnosis. If you are female, assigned female at birth, or identify as female, be sure to find a psychologist who has significant training and experience in diagnosing autism in females, women, and girls.

Autistic Females Are Very Good at Hiding Their Autism

We call this camouflaging.

Autistic camouflaging is when the person hides their autistic characteristics or traits so that they are less obvious to others, even though the autistic person is usually not aware that they are doing this.

“Camouflaging … is a bit like a chameleon changing the patterns on its skin to fit into the surroundings. The chameleon is still there, but it is trying to look like everything else around it.”

Laura Hull and Will Mandy

Camouflaging is most common in those with late-diagnosed autism. These individuals are usually not diagnosed until middle age or older adulthood — precisely on account of their ability to mask or camouflage particular behaviours and characteristics.

In other words, camouflaging often leads to delayed autism diagnosis.

“Jennifer [who was not diagnosed with autism until she was 45] … says she practices how to act. Before attending a birthday party with her son, for example, she prepares herself to be ‘on’, correcting her posture and habitual fidgeting. She demonstrates for me how she sits up straight and becomes still. Her face takes on a pleasant and engaged expression, one she might adopt during conversation with another parent.”

Francine Russo

It’s usually only after diagnosis that an autistic person becomes aware of their camouflaging tendencies, as they may have thought that the things they do to fit in is what everyone does when they socialize. Many will then seek to have more control over their tendency to camouflage, and several try to reduce the behaviour, so as to put less pressure and strain on themselves.

Camouflaging behaviour is highly correlated with mental health challenges and suicide.

Many individuals who are diagnosed as autistic in adulthood may not seem all that different to their peers or to people meeting them for the first time, but they feel very different inside. This perceived difference and feeling of otherness causes a great deal of suffering.

An autistic person’s ability to camouflage usually underlies the common experience of being told, “But you don’t look autistic!” when sharing news of their diagnosis with others.

Camouflaging for an autistic person takes tremendous energy and is often one of the main reasons that autistic people seem like hermits or “shy” introverts, when in fact not all autistic people are introverted. Contrary to common misconceptions, many (if not most) autistic people enjoy socializing and crave connections with others — just like almost everyone else on the planet — but socializing and interacting with others tends to require more energy for autistic people.

Most autistic people are unable to tune out or ignore sensory information — like sounds, sights, textures, tastes, smells — the way that neurotypicals (non-autistic people) can. This means that their brains work overtime to sort, process, interpret, and respond to all sensory information and incoming stimuli. The world for an autistic person is typically too loud, too bright, too itchy, too smelly, too uncomfortable, and very, very exhausting. They will need more time to themselves to rest and recharge.

“When I’m uncomfortable in a social situation because of too much noise and other stimulations, my desire is to escape or retreat quickly (and, as viewed by others, quite rudely) to a safe, quiet corner. But to avoid doing this, I grip my hands tightly together in front of me — really tightly. I crush the fingers of one hand with the other, to the point that it’s painful. Then I can concentrate on the pain and suppress the urge to run away, to be seen as rude.”

Vanessa Nirode

Add the need to camouflage to this near-constant state of sensory and cognitive overload, and any energy the autistic person has is quickly used up.

Camouflaging behaviours include:

  • Making eye contact even when it might be uncomfortable;
  • Forcing oneself to make small talk, even when not interested in this type of conversation;
  • Talking to someone they actually aren’t interested in or may even be afraid of;
  • Putting on a persona or copying behaviours, gestures, facial expressions, and vocal inflections of others so as to “fit in” or not stand out in particular social settings, etc.
    • Some autistic people who are very “skilled” at camouflaging appear to others as incredibly socially skilled, extroverted, and even gregarious; many make great entertainers and several Hollywood stars, comedians, singers, models, and Broadway performers are on the spectrum.

While everyone, whether autistic or neurotypical, camouflages at times, many autistic individuals camouflage whenever they are in a social setting or around people they do not know well.

Why do autistic people camouflage?

  • They have grown up being made to feel ashamed of their differences. They learned very early that their unique characteristics and traits are not acceptable or seem strange to most others. To avoid their judgment, disapproval, and/or anger and the resulting embarrassment and shame, autistic people learn to put on an act — to act like neurotypicals.
  • Camouflaging “is often motivated by a sense of alienation and threat, and frequently represents an attempt to avoid ostracism and attacks,” which shows us “the pervasive difficulties of being autistic in a world that is shaped by the non-autistic majority.”

“Women and girls often have a natural drive to fit in socially, and so the symptoms they present with aren’t stereotypically ‘autistic’.”

Hannah, interviewed by Lucy Edwards

While several autistic males and females engage in camouflaging behaviour, evidence shows that it is more common in women, girls, and those assigned female at birth, possibly due to greater social pressures experienced by those who are female or feminine to be socially engaging, vivacious, and always accommodating and pleasing to others.

“Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.”

Francine Russo

I Know I Don’t Look Autistic: What You Need to Know About Autism in Women and Girls

This is a video for healthcare professionals — including doctors, therapists, psychologists, social workers, and nurses — who may be confused about autism in women, girls, and those who were assigned female at birth (afab). If you suspect that you may be autistic, feel free to share this video with your healthcare provider.

Dawn Prince-Hughes Quotes

Dawn Prince-Hughes is an autistic anthropologist, primatologist, and ethnologist. She is an adjunct professor at Western Washington University.

Here are some quotes from “An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives” in Ethos, Journal of the Society for Psychological Anthropology.

To read the entire article, check out:

On being incredibly sensitive:

“Since I can remember — and that is from my own beginning — I have been pierced and pained by the intensity of life. There were many times as a child I believed I would crumble in on myself, my emotional skeleton finally eaten away by the screaming and clutching of a modern society that dissolved me. ‘Normal life’, other people call it.”

Dawn Prince-Hughes

“I would sit at my desk at school or on the steps of my house and feel the eating away on the inside of me and the growing pressure outside — on my skin, my eyes, my ears — and I would wonder if I would just disappear. I was sure it could happen and I would cry. I felt as though I was made of stone and pain, as if my frame was a crying fossil…”

Dawn Prince-Hughes

On autism as hyper-connectedness:

“I don’t have a good sense of where I start and end and where the things around me have boundaries. I am always a living part of a living world. I inhabit this living world with everything feeling like an extension of myself, and with myself as an extension of all around me.”

Dawn Prince-Hughes

“My struggles with school and its reflection as a training ground for disconnection started early in my life. From the din and pain of kindergarten to the time I quit high school and was then homeless for many years. People would tell me I ‘wasn’t cut out’ for school and normal life and now I know it was because I wasn’t cut out at all. I was just connected. I invoke these particular memories here to begin to reflect on how that connectedness, and antidote to all the cutting and dismembering we are taught through formal education, eventually led to my being an anthropologist, a person, a mother without seams.”

Dawn Prince-Hughes

“We are all strange and broken and beautiful in our own ways. We are each so afraid of disconnection and yet it can’t be easily escaped; some say it is an inevitable state of being and, perhaps, the price of consciousness. That fact makes our connections to other living things all the more important to cultivate. There is beauty in our difference and also beauty in our sameness: sameness with other animals, sameness with one another. We feel the loss of so many things: falling forests, disappearing animals, the loss of each other as we move far and fast in our culture.”

Dawn Prince-Hughes

“I think back to our original ancestors. If they were, as I believe, like me in their way of being, their needs were simple after the eating and drinking: to be loved, to be appreciated for their special abilities, to want to leave something meaningful behind them.”

Dawn Prince-Hughes

On the deficit model of autism and autism being a disability only in a particular context:

“Knowing that there is much illusion in the world I feel sure that my way of being is only a disability of context, that what have been labeled symptoms of autism in the context of my culture are inherited gifts of insight and action.”

Dawn Prince-Hughes

“I knew I would be honest when [my son] asked questions, that I would make sure there were no final answers to anything, and because being broken is, to a large degree, dependent on context, I would protect him from the elements of this culture that would wound him wrongly.”

Dawn Prince-Hughes

On motherhood as an autistic mother:

“At times, though, the prospect of being a modern mother would overtake me. Soon before my son was born my fears about being a different kind of mother came back to me. Surrounded as I was by the same culture that had always pointed out my potential failings as a single entity, I now saw evidence everywhere that motherhood in the material and disconnected world was something every mother needed guidance to survive.”

Dawn Prince-Hughes

“Even more for [autistic] mothers like me than those of the ‘normal’ [neurotypical] type, there are very frightening pitfalls; for example, the kind of wild sensitivity autism can bring to the surface at K-Mart is like unto an elemental force. Discomfort and bewilderment in certain settings like that can engulf people like me with such ferocity that people who don’t understand its effects might well believe they are dealing with some escaped animal.”

Dawn Prince-Hughes

On being an autistic mother to an autistic son:

“The way [my son] is connected has been as terrible a thing as it has been wondrous. When he was trying to save a spider at the library when he was in kindergarten, urging it to climb onto his hand to put it outside, some teenage boys came over and killed it. … He cried for days about the death of the spider and his helplessness to save it. A year later … when I came out to see what he was doing, he proudly showed me that he was escorting baby spiders, the size of pinpoints, over to the bush one by one so that they could find a better place to live. He was still whole.”

Dawn Prince-Hughes

“Late in kindergarten, though, he came home from school crying because he was different. Through his tears he told me that he cares about things the other kids don’t care about.”

Dawn Prince-Hughes

“I had hoped that the beauty I have shown him about his difference would carry him through … It soon became clear, though, that he was learning, through the flooding of his senses, in a time and place too loud and bright and complicated, that human people can be dangerous. Even though I explained to him that they are also wondrous and beautiful, I can’t argue with what he was beginning to understand.”

Dawn Prince-Hughes

“Unfortunately, the chief danger and distance he was learning is that people can tell you that what you are isn’t what you should be. I knew that the children at school were teasing him for talking to plants and bugs an rocks. His teacher told us he had a learning disability and had some attention deficit problems. He was starting to not be able to sleep at night and had anxiety attacks. Where he had always been an easy child he started to throw himself to the floor and scream over the smallest challenges. He started to be unable to go to restaurants because the lights hurt his eyes and the normal noise of conversation hurt his ears … He developed strict routines and would fall apart if something unexpected happened. He started to develop tics. He was becoming contextually autistic.”

Dawn Prince-Hughes

“I have home schooled him for the last three years and he is bright and flourishing. He is contextually open and interested in the world and the people close to him, his family and friends that mirror his gifts and help him make meaningful sense of being a human person … Where he had started to be self-conscious of his connection to all the things around him, he now once more takes me by the hand to share the world.”

Dawn Prince-Hughes

“Now that my son is nine, we share our sense of wonder that we should be a part of so much. We will be walking and see a leaf fall from a tree. ‘I felt that like it slipped off my finger and slipped down my spine to the roots of my feet,’ I will tell him. His hand in mine he’ll smile and nod.”

Dawn Prince-Hughes

Common Misdiagnoses Given to Undiagnosed Autistic Women

“There is increasing evidence that … autism symptoms in women and girls are frequently overlooked and misdiagnosed.”

Robert T. Muller

Autistic females and some males who have not yet received an autism diagnosis often go through life with only partial explanations for their difficulties and differences. These explanations usually come in the form of psychiatric and mental health misdiagnoses, incorrect, or partial diagnoses.

Common misdiagnoses and partial diagnoses given to undiagnosed autistic individuals include:

  • Borderline personality disorder (BPD)
  • Schizophrenia
  • Post-traumatic stress disorder (PTSD)
  • Bipolar disorder
  • Obsessive-compulsive disorder (OCD)
  • Depression
  • Social anxiety disorder
  • Generalized anxiety disorder
  • Anorexia and/or other eating disorders
  • Phobias

It should be noted that just as these conditions can co-occur in various combinations in those who are not autistic (aka neurotypical), autistic individuals can also have one or more of the above conditions. The majority of autistic individuals, for example, are diagnosed with anxiety and/or depression and/or PTSD at some point in their lives, either as a direct result of autism or from living in a world that is discriminatory to autistic people and autistic traits.

Many individuals on the spectrum have significant and numerous experiences of being bullied, rejected, sexually abused, and otherwise mistreated and victimized. There is significant evidence showing that those on the spectrum are more naive, trusting, and desperate for acceptance from peers — and therefore more likely to get into abusive relationships (due to not noticing or responding to red flags sooner) and other scenarios that put them at risk.

So why should we be concerned?

“I’ve been through quite a long journey, being given about 10 mental health diagnoses along the way. It was getting to that point where it felt like I was caught in the middle of a guessing game. … ‘We don’t really understand — let’s keep throwing labels and see what sticks.'”

Emily Swiatek

When an undiagnosed autistic adult is diagnosed with any of the above conditions or other mental health conditions, it’s only part of the picture.

An undiagnosed autistic individual who receives misdiagnoses or partial diagnoses can experience significant problems with stigma and discrimination (especially in the case of schizophrenia and borderline personality disorder), and even discrimination from healthcare professionals who specialize in treatment of these conditions.

They can also receive years of unnecessary psychotropic medications and various forms of talk therapy with little to no positive impact on their lives (often due to the therapist or psychologist not understanding autism and therefore not able to address the main presenting concerns). This can lead to significant frustration, hopelessness, and a tendency to self-blame.

Most importantly, undiagnosed autistic adults who have received wrong or partial mental health diagnoses lack the knowledge that will set them on the path to self-acceptance.

For autistic individuals of any age, sex, gender, and ethnicity, self-understanding and self-acceptance are key to contentment and thriving in life.

The Deficit Model of Autism

Autism research and our shared knowledge about autism have come a long way. However, while great advances have been made, there is still a long way to go. The actual way we think about autism needs a drastic overhaul.

Autism was once categorized as a mental illness that had its roots in early childhood trauma or poor parenting. We now know that it is a genetic neurodevelopmental difference. Most knowledgeable autism experts and researchers are steering away from using words like “disorder” or “illness” to describe autism. They also tend to use words like “traits” or “characteristics” instead of “symptoms” or “signs” of autism.

Historically, though, our understanding of autism has been based on a deficit model. The deficit model continues to be the prevailing one. In other words, most of our understanding of autism is rooted in the negative aspects of the condition, the apparent difficulties, problems, and symptoms that come along with being autistic.

This deficit model is based on a non-autistic (aka, neurotypical) understanding of what it looks like on the surface to be autistic. And, more importantly, this deficit model of autism is based on a neurotypical concept of what is normal and acceptable in the areas of communication, behaviour, social interaction, and responses to sensory input.

Diagnosis of autism is made based on two main categories of outward observations (pay attention to all the negative words, like “deficiency” and “lack” and “restricted”):

  • Deficits in social communication, manifested by:
    • Deficiency in back-and-forth conversation,
    • Less social interaction and absence of interest in peers,
    • Abnormal eye contact (too little or too much),
    • Strange gestures, and/or
    • Deficits in developing and/or maintaining friendships and other relationships.
  • Behaviours or interests that are repetitive or restricted, manifested by:
    • Repetitive movements or repetitive speech (e.g., saying the same word or phrase over and over, humming the same tune repeatedly),
    • Having inflexible routines or distress in response to change,
    • Restricted interests that are abnormal in intensity or focus, and/or
    • Hyper- or hypo-reactivity to sensory input (i.e., either indifferent to sensory input like pain or temperature or overly responsive to sensory input like bright light and noisy environments).

As an autistic person, I can tell you that I do not experience the way I communicate socially as a deficit or lack. Other people have made me feel ashamed for my quirks and social differences (many of which I mask — more on that later!), yes, but in a roomful of only autistic people my way of being is not odd or wrong at all. The neurotypicals are the ones who would appear quirky or odd in a roomful of autistic people.

My way of being and communicating socially is odd, problematic, or deficient only from a neurotypical standpoint.

For example, my own back-and-forth conversation might appear “deficient” or “impaired” because I usually display more and longer pauses in conversation than neurotypicals are used to. This is due to the fact that my brain takes more in — cognitively and sensorily — than a neurotypical brain, meaning that my brain has to work harder to sort, filter, and analyze the incoming information. What looks like gaps and oddness to you is just me processing and formulating a response.

Also, I usually won’t say anything unless saying something has a clear purpose at that moment (to share important information, ask an important question, make someone laugh [definitely important!], etc.). From a neurotypical perspective, this might look like something is wrong with me. I’m “too shy” or “stupid” or “aloof” or any number of negative assessments.

There are other autistic people who, in the same scenario, might talk “too much” and for various reasons. It could be an anxious or fight-or-flight type response to the flood of cognitive and sensory information coming in. This FLOOD of information can be literally agonizing, especially if we are stressed or already overwhelmed in some way. For some of us, talking or vocalizing in any way can be soothing.

Another example in response to the diagnostic criteria above: I have less social interaction compared to the average neurotypical, yes, mostly because social interaction — especially in large groups or in new (or loud!) settings — is very draining for me. I need a lot more time to recharge and be alone.

But my experience of the level of my social interaction is that it is just right. In other words, I don’t feel that I require more social interaction, and I am actually deeply interested in my peers. It’s why many of us are interested in psychology and often pursue psychology as a special interest or career choice (more on that later!).

I may not look you in the eye as much as you’re used to, because for whatever reason direct eye contact FEELS very intense and can even be painful sometimes. I can hold your gaze and I can do it well, but it’s because I have been taught that this is what is expected of me in social contexts. But the neurotypical demand for and expectation of near-constant eye contact feels abnormal and strange to me!

From an autistic perspective, the neurotypical world is the deficient one, the odd one, the one that is pathological and makes very little sense. It’s too noisy, too rigid, too set on conformity, too bright, glaring, and disconnected.

It is easy for me to turn the DSM-5’s diagnostic criteria into a list of benefits, strengths, gifts, and unique qualities:

  • Strengths in social communication, manifested by:
    • Deep conversation as opposed to small talk,
    • More meaningful but fewer social interactions,
    • Purposeful eye contact only when necessary,
    • Unique gestures that help relieve tension and stress,
    • Intense social interactions and strong bonds with a select few, and/or
    • Deep interest in others that often takes the form of involvement in social issues, psychology, sociology, and so on.
  • Ability to maintain strong focus and feel very deeply, manifested by:
    • Being able to study or focus on one subject or issue for long periods of time,
    • An adaptive ability to keep strict schedules, allowing for a sense of calm and control in a busy world filled with pressures and expectations, and/or
    • Being intensely connected to everything around them so that everything is more overwhelming, but also more beautiful (Note: some autistic folks experience some sensory stimuli less intensely, but they almost always have some kind of hyper-reactivity to some kinds of stimuli; they may not be sensitive at all to cold, for example, but they will be unable to socialize in a crowded room).

Facts About Undiagnosed Autism (Infographic)

Here’s the problem: the number of children diagnosed with autism today is far greater than the number of adults diagnosed with autism. The two numbers should match. This means, there are a lot of adults in need of diagnosis.

Sources:

  • Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Robinson-Rosenberg, C., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L. C., Harrington, R., Lopez, M., Fitzgerald, R. T., Hewitt, A., … & Dowling, N. F. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years. Surveillance Summaries, 67(6), 1-23. http://dx.doi.org/10.15585/mmwr.ss6706a1
  • Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10). doi:10.1007/s10803-016-2872-8
  • Cusack, J., Shaw, S., Spiers, J., & Sterry, R. (2016). Personal tragedies, public crisis: The urgent need for a national response to early death in autism. Autistica website. https://www.autistica.org.uk/downloads/files/Personal-tragedies-public-crisis-ONLINE.pdf

What Is the Female Autism Phenotype?

Some females are diagnosed as autistic at a young age, but the majority go undiagnosed until their teenage or adult years. A large number are never diagnosed. Why is this the case?

The girls that get diagnosed as autistic at a young age often present with more male-like or “traditional” autistic characteristics. One might say that they present with more “obvious” autistic traits. While the girls who get diagnosed early in life are NOT “more autistic”, their characteristics DO happen to be more in line with the stereotypical, incomplete account of autism, on which the DSM criteria are based.

Both the earliest research in autism and the majority of research in autism have been done in men and boys. This has led several autism experts to conclude that significant revisions to the diagnostic criteria and assessment tools are required to ensure reliable autism diagnosis in all genders.

The other reason that girls might be diagnosed early is that they had the good fortune of receiving an autism assessment by a healthcare professional who was well-versed in the many faces of autism (aka, autism’s heterogeneity) and highly knowledgeable about the ways that autism can present very differently in females.

Here are some ways that autism presents differently in females:

  1. Autistic females are generally more socially-inclined and socially-capable than their male peers. While their social lives will usually be different than those of non-autistic females — generally having fewer friendships and spending more time alone — they are less likely to be seen as different or abnormal.
  2. Autistic females are better able to unconsciously “camouflage” or “mask” their autistic characteristics and difficulties in such a way that they generally fit in and do not seem different from their peers. There are incredibly high emotional and physical impacts of camouflaging, which can result in significant risk of developing mental health disorders and autoimmune disease. High risk of suicide is correlated with camouflaging behaviours.
  3. Autistic women and girls tend to have fewer repetitive behaviours (such as hand-flapping and rocking back and forth), or are more inclined to hide these behaviours from others.
  4. The special interests of autistic women and girls tend to be more varied and seen as more socially-acceptable than those of autistic men and boys (though there are clear exceptions). Autistic women and girls are more likely to have special interests in makeup, celebrity culture, crafts, literature, poetry, music, and fine art.
  5. Undiagnosed autistic girls who present with behavioural or emotional problems are likely to have these problems blamed on “feeling blue”, shyness, being highly sensitive, family problems, trauma, or other issues, while undiagnosed autistic female teens and women are more likely to be diagnosed with depression, PTSD, obsessive-compulsive disorder, anxiety, bipolar disorder, or borderline personality disorder. Usually the last option, or the option that no one thinks of, is AUTISM.

Read more here.