Autism in women (A comprehensive guide)

In this guide, we will discuss Autism in women, their perception of autism, how the diagnosis is often confused with other disorders, challenges they face, treatment options and some additional concerns for women with autism. 

Autism in women: Less frequent or misdiagnosed?

Autism in women is said to manifest in a 3:1 ratio instead of 4:1 according to recent studies.

However, it is widely known that autism affects more males than females.

Recent studies have made an effort to understand autism in women and their perception of the condition.

It has been suggested that women may be better masking their condition than men, this has led to the diagnosis of autism being more prevalent in men than women. 

The concept of women and autism is barely understood.

Many of them are either misdiagnosed, receive a diagnosis later in life or are left without the autism diagnosis after all.

It has been suggested that women and girls tend to experience autism in a more subtle way than men, which makes the presentation of the behavior barely detectable or that is how clinicians and other people tend to perceive it. 

In a study published initially in  2013 researchers aimed to examine the differences in behavioral symptoms and cognitive functioning between males and females with autism.

Their results suggested that relative to men, females had greater social communication impairment, lower levels of restricted interests, lower cognitive ability, weaker adaptive skills, and greater externalizing problems. 

Another study from 2016 investigated the female autism phenotype and the impact upon the under-recognition of Autism Spectrum Conditions (ASC) in women.

They did a qualitative analysis and categorized the data in themes and sub-themes.

1. You’re not autistic, which established the major difficulties to gain the diagnosis of autism in women including being ignored and misunderstood, even giving them the wrong diagnosis such as anxiety disorder, depression or eating disorders. 
2. Pretending to be normal, which identified the strategies young women employed when trying to fit in and mimic their peer’s behavior. They reported masking their autistic traits to appear “normal” to others, even learning from TV shows, magazines or media sources how to act and behave often implementing social mimicry (copying speech patterns and certain body language). 
3. Passive to assertive, which explored how passivity and social naivety impact on young women with ASD and how they learn to be assertive. Their perceived passivity often led to unhealthy relationships and high-risk situations, including sexual abuse by feeling forced to have sex either by their partner or people they didn’t know. In addition, they reported not being able to read other people’s intentions or how to say no to certain situations.
4. Forging an identity as a young woman with ASC, which outlined the most common difficulties with being female and having a social communication disorder and the protective role played by special interests. They felt the need to fulfill the stereotype or act as it was expected of them as women or girlfriends but had the feeling of being confused or felt extremely uncomfortable. Instead, through special interests, they were able to form their identities. 

Signs of autism in adults

The NHS lists some of the signs of autism in adults as follows:

• finding it hard to understand what others are thinking or feeling
• getting very anxious about social situations
• finding it hard to make friends or prefer to be on your own
• seeming blunt, rude or not interested in others without meaning to
• finding it hard to say how you feel
• taking things very literally – for example, you may not understand sarcasm or phrases like “break a leg”
• having the same routine every day and getting very anxious if it changes

They recognize that autism can manifest differently in men and women, which in the case of women can be harder to determine if someone is autistic just by the criteria of autism itself.

Research has suggested that women tend to mimic people’s behaviors as a way of hiding their feelings and to cope with social situations.

What is autism?

Autism is a neurodevelopmental disorder and a life-long condition.

In the previous version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-4) included five Pervasive Developmental Disorder (PDDs): 

• Autistic disorder
• Asperger’s syndrome
• Rett’s syndrome
• Childhood Disintegrative Disorder
• Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)

However, the newer version, the DSM-5 replaced the autistic disorder, Asperger’s Syndrome and PDD-NOS categories for Autism Spectrum Disorder, as an umbrella containing all of them instead of differentiating among conditions that range in symptoms and severity. 

In addition, you probably have heard about high functioning autism, this term was not considered a category in the DSM but was associated with Asperger’s diagnosis. 

If you want to learn about this condition and how to implement effective strategies to improve their quality of life, check the Best Books for High Functioning Autism.

Theories on Autism in women

We have covered so far how boys/men get diagnosed at a much higher proportion than girls/women, but why is that?

Is there some sort of protective factor against females?

Are males more prone to autism?

Well, the National Autistic Society suggests there are various theories as to why it seems that autism is more common in males than females.

Here are some of the theories:

• There is a female autism phenotype. As we have discussed, it appears that females have characteristics that do not fit the profile associated with males. This may be due to the instruments used to assess females since they are based on male characteristics. 
• Autism is an exaggeration of normal gender differences.
• The theory of autism contemplates the differences in male and female brains, indicating that there is an effect of fetal testosterone while the brain is developing in its first stages. 
• Biological factors such as genetics and sex chromosomes that may indicate why males have a higher prevalence of autism.
• Females seem to be better camouflaging their difficulties. 
• Autism traits in females are under-reported by teachers in their first stages. 

According to a recent study from 2019 performed in female mice, have suggested that fetal female mice can remain unaffected or resist a maternal antibody that triggers brain abnormalities and autism behaviors in males.

However, when a second immune molecule is added then females also start displaying the behaviors. 

These findings support the idea that females seem to be more resistant or resilient than males to the environmental changes during brain development and can shed some light on why boys seem to be more vulnerable to Autism than girls. 

Subsequently, postdoctoral fellow researcher Ciara Bagnall-Moreau, in Betty Diamond’s lab at the Feinstein Institute for Medical Research in Manhasset, New York, indicates that “we think that a second hit of inflammation in pregnancy sort of pushes it for females”. 

In a previous study, they found that about 10% of women who had an autistic child have certain antibodies that attack brain proteins such as the CASPR2, encoded by the autism gene CNTNAP2.

Other related Mental health conditions

According to the Asperger/Autism Network (AANE) women with high functioning autism tend to experience co-occurring mood disorders and often internalize their feelings of failure and frustration.

There seems to be a high prevalence of depression and anxiety (34-36% respectively). 

Additionally, they say symptoms tend to overlap between autism and eating disorders such as anorexia, however, the samples are small so it makes it difficult to determine how many of them have both. 

As we have discussed, women with autism tend to develop coping skills or mechanisms to camouflage their difficulties, learning from others and mimicking their behaviors to remain undetected where they have even expressed feeling exhausted, withdrawn, anxious and depressed. 

Adding more to the risk of being misdiagnosed, women with autism tend to get diagnosed with a borderline personality disorder, avoidant personality disorder, schizoid personality disorder, among others (AANE). 

Motherhood 

Despite their autism and the challenges they can experience, it has been suggested that women with autism are successful when parenting.

Even though they seem to remember childhood memories in a more vivid way and are able to relate better with their child, there are some struggles and challenges when their children go through adolescence. 

This seems to be related to the fact that during adolescence their children start making social life and making it the center of their lives, making it difficult when trying to interact with other parents and when trying to set up social interactions for their children needing support from family, friends and even professional to help them cope with these challenges. 

Safety concerns and Sexuality

As we discussed previously, women with autism are at a higher risk for victimization and sexual abuse due to their inability to recognize dangerous situations or contexts.

It becomes important to help them develop skills and strategies to facilitate the recognition of these situations.

The AANE recommends reading the book “Safety Skills” by the author Liane Holliday Willey. 

In contrast, women with autism tend to perceive their sexuality in a varied number of ways.

As it is the case with neurotypical women, sex has always been considered a taboo and the discussion among females with autism even more so. 

In addition, it has been reported that many of them experience a reduced sexual drive as a side effect of the medication to treat the symptoms, sometimes leading to perceive themselves as asexual.

It is important to attend forums and get professional advice on this matter so they can better understand what they are feeling and why. 

How is autism in women treated?

Needless to say, autism is a neurodevelopmental disorder and up to this date, there is no cure.

However, medication treatment is highly regarded to treat the related symptoms or the other disorders that may co-occur such as anxiety and depression. 

In addition, medication is not the only treatment used to mitigate autism symptoms, there are combined therapies such as occupational or talk therapies that can help people with autism to interact in a more functional way with the world around them. 

Therapies like these are provided by a number of different organisations or centers such as, Autism East Midland center, Autism West Midland or Autism Wessex.

Why is this blog about autism in women important?

As we have discussed, autism in women is highly misunderstood so it is necessary to raise awareness about how women and girls get to experience autism and how we can put the stereotype of autism being thought to be more common in men and boys when it is important to take into consideration that autism in women goes undetected due to their ability to mask their difficulties. 

Being a woman is already perceived as hard but being a woman and having autism is even harder so being more empathetic and sensitive about a girl or a woman suffering from autism can make a difference to them. 

Please feel free to comment in the comments section below!

Recommended reading

• Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age
• Odd Girl Out: An Autistic Woman in a Neurotypical World
• A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support
• Autism in Heels: The Untold Story of a Female Life on the Spectrum
• Twirling Naked in the Streets and No One Noticed: Growing Up With Undiagnosed Autism

References

Healthline: Understanding Autism in Women

researchautism.org: Women, girls, and autism

Autism.org.uk: Gender and autism

NHS

Spectrumnews.org: double immune hit challenges female mice resistance to autism

medicalnewstoday.com: Everything you need to know about autism in adults

A Qualitative Exploration of the Female Milner, V., Mcintosh, H., Colvert, E. and Happé, F. (2019) Experience of Autism Spectrum Disorder (ASD). J Autism Dev Disord. 

AANE: Asperger and Autism Spectrum: Women and Girls