Girls with Autism- An Underdiagnosed and Undertreated Population 

by Elizabeth Linden

Do only males have autism?

As a special education teacher of 26 years, I had the opportunity to teach dozens of students with autism. I also have a 58-year-old brother with autism. In all of my years of teaching, I have never met a female student who was diagnosed to have autism. With that said, that doesn’t mean I haven’t met any females with autism. According to Autism Speaks, boys are four times more likely to be diagnosed with autism. Girls are an underdiagnosed population and that presents a serious problem in the treatment and prognosis of those with the disorder.

Why is early identification important for all people with autism?

My brother displayed many of the classic signs of autism such as deficits in social communication, repetitive movements, hypersensitivity to sensory input, distress in changes, and echolalia (among other things). He was not diagnosed until he was 21 which seems odd in retrospect because when I look at the diagnostic criteria, he has all the symptoms. It is my belief that many people, like my brother, just slipped through the cracks. He may have been misdiagnosed because he is 58 years old now and not much was known about the disorder when he was a child. My brother attended a school for students with what was called “mental retardation” at the time. He didn’t fit in with the rest of the kids in his class and was always getting into trouble. It was a great challenge for my parents (and the rest of the kids in our family) who didn’t know how to predict or handle his outbursts that were due his sensitivity to disruptions in his schedule. Nor did we know how to soothe his hypersensitivity to sights, sounds and other environmental stimuli. Knowing that early education at school and in the home is extremely important for life-long development and well-being, I believe my brother (and my parents) would have had a healthier and happier family life if they knew the correct diagnosis as well as strategies on how to help my brother. 

Identification of autism

Now that male students are being identified earlier and educated appropriately, their future is looking brighter than boys diagnosed decades ago. However, there are many people that are not receiving services and that is because they have slipped through the cracks. These are older women with autism who were never diagnosed as children.  Fortunately, younger girls are now starting to be identified with autism, but it is difficult to identify them.

So why are females being missed in the diagnosis of autism? 

Many girls have unfortunately escaped proper diagnosis because autism presents itself differently in girls than it does in boys. Previous research was conducted using white males and the diagnostic criteria was made using this population thus creating gender and perhaps racial bias. There are differences between the genders in regards to their presentation of repetitive behaviors, imaginative play, restricted interests as well as their ability to form social relationships. 

Most autistic people display repetitive behaviors. Boys are often seen flapping their hands, but a female will be more likely to twirl their hair, pick their skin, or gallop. While clinicians may think people with autism don’t often engage in imaginative play, it is seen more often in autistic females. Like males, females have restricted interests, but their interests may go unnoticed because they are socially relatable. For example, my brother has always been interested in memorizing phone numbers and street maps. Not many peers could relate to these peculiar interests, and he really didn’t seem to care. However, females may obsess about their favorite Disney movie or a favorite animal. As it turns out, it is not the peculiarity of the interest that is important in identification. It is how the person engages in the activity that matters. The difference between an autistic girl and a neurotypical girl is that they will play the same movie scene hundreds of times and may believe the characters are real. In regards to social relationships, we see a difference between male and female autistic people as well. While some males may seem more detached or disinterested in forming social relationships, females are more likely and more motivated to engage in social relationships but in a restricted way. They may have just one friend at a time and they may become possessive of them. While males may have a harder time understanding social conventions, females may have an easier time, but they also may just be imitating others’ behaviors to fit in. Unfortunately, these girls may be incorrect at interpreting the emotions of others which may lead to misunderstandings and later rejection. Although they might be able to make friends, they can become an easy target for bullies.

Why is the diagnosis important?

Missing a diagnosis for any autistic individual can result in the development of mental and physical health issues and greater impairment across domains and across a patient’s lifespan. Managing stress and regulating emotions is difficult for both genders on the autistic spectrum. In my experience, I have seen quite a few angry emotional outbursts from autistic males. They can happen quickly, but if the source is identified and calming strategy put in place, they can be calmed down quickly and their male peers seem to forget outbursts easily. For a female, angry emotional outbursts are less socially acceptable (especially when trying to form friendships). Because they are more socially inclined, autistic females often become people pleasers which can set them up for a life of being taken advantage of and possible abuse. In adulthood, autistic women are found to have comorbid disorders such as anxiety, depression, mood disorders, borderline personality disorder, eating disorders, and OCD. In the home, these women may find themselves struggling with organizational tasks because they have not developed strategies to overcome executive functioning deficits. If not identified and taught compensatory skills, autistic women may suffer from lowered self-esteem because they are missing the explicit explanation of how to do things.  Women who receive a diagnosis, however, have a better prognosis and greater self-esteem. Getting the diagnosis early can mean getting the right support in place at an early age. Proper support is crucial not only for the family of autistic girls and boys but also for their development of positive self-esteem and life-long stress management. 

​

For more information on autism, visit https://www.autismspeaks.org/autism-statistics-asd

​

Elizabeth Linden is a retired special education teacher with 25 years of experience. She has a bachelor’s degree in Special Education and a master’s degree in Health Psychology. Liz has been an advocate for the educational needs of special education students throughout her career as well as an advocate for her own medical needs as a person with a rare headache disorder.  Liz is also a Senior Anchor with The Power of the Patient Project, and her interviews are featured throughout our digital library.