Lauren's Hope Medical ID

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.

Common tool for diagnosing autism only identifies 1 in 5 autistic children

Most autistic children do not have cognitive delays and most develop speech at similar times as their non-autistic peers. In fact, some autistic children speak earlier than average and do not miss major developmental milestones.

The main characteristics of many autistic children include:

  • intensity of focus
  • high emotional empathy and distress in response to others’ pain
  • differences in social preferences such as wanting to hang out with one person at a time or in small groups
  • sensory differences: being either very sensitive or under-responsive to touch, taste, smell, noise, and so on

These characteristics go against the stereotype that a person must have all of the “classic” traits of autism in order to be diagnosed.

Even with improvements in autism diagnosis over the past few decades, resulting in more and earlier diagnoses, children are still falling through the diagnostic cracks. One main problem is that the available diagnostic tools are not sensitive enough to capture the many ways that autism can present.

Our Current Screening Tools Miss Subtle Presentations of Autism

A recent study published in BJPsych Open found that common ways of screening for autism at three years of age are only effective in diagnosing those with significant cognitive delay (IQ below 70).

Using data from the Norwegian Mother, Father, and Child Cohort Study, the researchers found that an autism assessment tool identified only one in five autistic children. This finding suggests that toddlers with level one autism (formerly known as high functioning autism or Asperger’s syndrome) would likely not be diagnosed through the use of available screening tools at this age.

Many countries have universal autism screening programs. The results of the present study suggest that these initiatives are not successful in identifying most autistic children.

While the assessment tool had high specificity, meaning that there were few false positives, the ability of the tool to detect autism was too low.

A person cannot suddenly develop or “catch” autism. Autistic individuals are born autistic. Autism is a genetic or inherited neurodevelopmental difference. Characteristics of autism are evident from an early age, usually in the first two years of life. These characteristics are often so subtle that they would not be obvious in healthcare settings.

Additionally, autistic traits are so varied that no two autistic individuals are alike, in the same way that non-autistic traits are so varied that no two non-autistic individuals are alike.

The BJPsych Open study stated:

“A critical challenge in autism screening is the lack of a clear boundary between the autism spectrum and the normal range of development. Autistic traits are continuously distributed in the population. The threshold for receiving a diagnosis depends on clinical judgement, which may vary between clinicians and change over time. In screening, the symptom scores of children with ASD may also overlap with those of other children. These features of the disorder suggest that it does not easily lend itself to detection by screening, at least not for children without general developmental delay.”

This means that early universal autism screening may not be useful or cost effective. Most parents seek diagnosis or assessment if they have concerns about their child. Perhaps emphasis should be placed on developing better screening measures for assessing autism in older children. Or more could be done to detect characteristics of level one autism at younger ages.

Since undiagnosed autism is associated with mental health challenges and risk of suicide in adulthood, early diagnosis can increase understanding and help autistic individuals access support.

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.

I know I don’t look autistic: What you need to know about autism in females

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.

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.

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.