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)
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 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.
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.
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:
- 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.
- 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.
- 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.
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.
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.
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.
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 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
“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.
- Borderline personality disorder (BPD)
- Post-traumatic stress disorder (PTSD)
- Bipolar disorder
- Obsessive-compulsive disorder (OCD)
- Social anxiety disorder
- Generalized anxiety disorder
- Anorexia and/or other eating disorders
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.
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:
- 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.
- 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.
- 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.
- 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.
- 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.