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

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