Lauren's Hope Medical ID

Autistic person or person with autism?

In my opinion, the preferred language is “autistic person”. When I was first diagnosed as autistic at the age of 38 (two days before my 39th birthday), I was unsure about this and didn’t know what to call myself. Now, I absolutely prefer identity first language — “autistic person”. It now seems strange to me when I hear or read “person with autism”, though I have heard that a minority of folks on the spectrum continue to prefer “person with autism”.

Why do I prefer identity first language? Autism is not an addendum unto myself. It is not an illness or something of which I’m trying to rid myself. I am autistic. Autism pervades my entire being and without it I would not be me.

Identity first language means that I am not looking for treatment or a cure for my autism. I am accepting myself for who I am, no questions asked. Autism is a different neurotype, not a disease or illness, nor is it something to be ashamed of.

Identity first language is “favoured by many autistic people” and “reflects the belief that being autistic is a core part of a person’s identity.”

Autism Awareness Australia

The trend of using person-first language, such as saying “person with autism”, had good intentions in that it tried to put the person first instead of their disability. But imbedded in this approach is a very negative view of disability. It assumes that the person should be ashamed to be defined by their disability, or, at the very least, that the person wishes to one day be rid of their disability.

Person-first language has had some unintended consequences. For some, it implied a negative value to disability. We don’t use person-first language when traits are highly valued. For example, we don’t say, “Person with intelligence,” we say, “She’s an intelligent person.”

The Asperger/Autism Network (AANE)

Autistic pride

In embracing identity first language, we are expressing our pride for who we are. We refuse to accept the deficit model of autism, which paints autism as a burden or something unwanted. When it comes to autism, it is my opinion that you can’t use person-first language unless you’ve internalized the deficit model of autism, at least to some degree.

What do you think? Leave your comment below.

The challenging journey to female autism diagnosis

The materials used to diagnose autism are biased towards male presentations of autism. This means that autistic males are far more likely to receive an autism diagnosis than autistic females.

Undiagnosed autistic females are more likely to be described as highly sensitive, shy, depressed, or diagnosed with conditions such as borderline personality disorder (BPD), bipolar disorder, and other mental health conditions.

Autism is not a mental health condition

Autism is a genetic neurodevelopmental difference. Many autistic people experience mental health conditions, either as a part of being autistic or because of the difficulties autistic people experience growing up and surviving in a world that is often hostile to autistic bodies and brains.

Why are so many autistic women not being diagnosed?

Autism scholarship is inherently biased and many healthcare practitioners are not trained to recognize autism in females.

Autistic females with average or above average intelligence (IQ) are most likely to go undiagnosed “causing them to miss crucial support that may accompany a diagnosis and alleviate some of their struggle,” writes Dori Zener, a clinical social worker in Toronto, Ontario.

Undiagnosed autistic women are at risk for increased rates of anxiety, depression, suicidal ideation and suicide attempts, and other mental health concerns.

A deep sense of being different

“For women with unidentified autism, anxiety comes from knowing they are different, but not knowing exactly why or how.”

Dori Zener

Perhaps the number one feature of autistic women who reach adulthood or even late adulthood without a diagnosis is an unrelenting feeling of being fundamentally different than their peers. They often describe feeling alien or incapable of being understood by others.

Many undiagnosed autistic women begin masking from a young age in order to try to fit in, and some do very well at this (to the point where no one, not even the best diagnostician, would be able to detect autism). Masking is almost always unconscious and the autistic girl often assumes that everyone has to put the same effort in to exist in the social world.

Some undiagnosed autistic girls function relatively well in school by being part of a small, close-knit group of likeminded friends. These friends may themselves be autistic or otherwise neurodiverse (e.g., ADHD, Tourette’s, etc.) which may explain the affinity they feel for one another. Autistic girls are often known to befriend those who experience rejection or bullying or who are otherwise seen as different by the majority. (They may themselves experience a great deal of bullying.)

Alternatively, the autistic girl may spend non-academic time pursuing hobbies or extra-curricular activities with an intensity not seen in her peers. Their enthusiastic participation may help further camouflage difficulties with social pursuits.

Some autistic girls have been known to be deeply committed ballerinas, athletes, musicians, artists, actors, and so on — pursuits that cut into class time or time at school and/or time that would otherwise be spent socializing with peers. Their social differences are therefore often chalked up to their intense talents or passions.

The profile of an autistic girl with average or above average intelligence is often very different from the typical profile of an autistic boy or an autistic individual with below average IQ. She may be seen as gifted, shy, eccentric, depressed, and/or uniquely talented.

Whether or not an autistic girl is able to develop friendships with relative ease, they continue to mask and camouflage to fit in — often with disastrous results.

“Masking can be detrimental to a person’s sense of self,” says Zener.

“[Masking] communicates inwardly that their true self is flawed and needs to be concealed or altered. Frequently this leads to identity crises, because after years of piling on layers of camouflage they are left wondering who they really are …

“Years of rote learning and mimicry permits them to pass as neurotypical, but this incessant extensive posturing leads to significant fatigue and mental strain. Their minds are full at the end of each day, trying to make sense of all of the conversations that took place and wishing they had made a different contribution. Overload can be lessened through social withdrawal and sensory deprivation, such as baths, dark quiet rooms, immersion into intense interests” and so on. — Dori Zener

Undiagnosed autistic women often graduate high school. Those from privileged backgrounds may complete college or university with relative ease and go on to complete advanced degrees. In the right environment, with the right familial and financial supports, they can excel.

Deep thinkers, deep feelers

Autistic women, however, whether diagnosed or not and even with the substantial benefits that privilege may bestow, often struggle tremendously.

They feel more strongly than most (for better or worse), need more time to process thoughts and emotions, second-guess themselves constantly, and — due to their tendency to be people pleasers and their inability to detect nefarious motives in real time — are often the targets of bullying and abuse at the hands of unscrupulous individuals.

Their tendency to ruminate and process information and stimuli very deeply leads to the tendency to develop PTSD more often and more easily than their non-autistic peers. This also means that autistic women are more susceptible to developing mental health conditions such as depression, anxiety, trauma disorders, and other co-occurring conditions.

Autistic women have a very high risk of developing suicidal ideation, eating disorders, and stress-related health conditions. Many report feeling suicidal by late childhood or their early teen years. Lack of diagnosis only further increases the severity of these conditions and the likelihood of developing suicidal ideation and suicide attempts.

Many autistic women who are diagnosed as autistic in adulthood report that their diagnoses brought a deeper sense of self-understanding and self-compassion.

Am I autistic?

If you think you might be autistic, here are some things to think about:

  1. Explore the process of getting a diagnosis or autism assessment. This process will differ from state to state, province to province, and country to country. The number one thing to look for in a healthcare provider is whether they have experience and training in diagnosing autism in adult women or those who identify as female.
  2. Connect online with members of the autism community and ask questions. Facebook in particular has many groups to choose from, many of which are private. The group I started can be found here.
  3. Ask parents, extended family, and family friends about how you were as a baby, toddler, and child. Autism does not suddenly develop or show up in later life; autistic people are born autistic, meaning that autistic traits exist from day one. Many autistic females develop normally (i.e., they generally meet developmental milestones on time), but all autistic people will have marked sensory differences: they will be either overly sensitive to sensory stimuli (textures, noise, bright light, touch, etc.) or under-responsive. Many of these sensory differences may be evident from the first days or months of life.

Dear Sia, you might be autistic

A couple weeks ago, I published a story on Medium titled, Dear Sia, You Might Be Autistic. The response has been massive and I wasn’t expecting it.

Let me know your thoughts.

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