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Stacey’s Story

Stacey was diagnosed with ASD at the age of fifty. She lived on the spectrum without getting any form of treatment or support.

“I was the CEO of a furniture company in London. I am a mother of two. I am a wife. I am a daughter. I am a sister. I am a friend. I am 53 and I got diagnosed with autism two years ago. My son has autism and he got diagnosed during his first year of primary school. Since he got diagnosed, me, my family, his school and his music teacher were making sure to support him in the best way possible to reach his goals and dreams as much as he can. And we are successful, apart from some bumps here and there on the road.

I got diagnosed just before my 51st birthday. Before that, I had to decide to stop carrying out the profession which I have studied for years and to give up the position that I worked so hard for. I had to stop because I got diagnosed with a strong form of depression that got worse over the past five years. When I got diagnosed it all made sense but at the same time, it didn’t. I have two healthy and lovely children, I have a beautiful and safe home and the unconditional support of my husband and family. It must have been the amount of work then. But it wasn’t. Just a few months later, I got diagnosed by my therapist. I have autism and not just since yesterday. I had it most likely my entire life. I am 53 now. How? How did nobody ever recognize this? How did I successfully graduate from High School? How did I complete two studies at University? And how did I become the CEO of a company in London? How did I manage to support my son who has autism? How did I build up a healthy relationship with my husband?

Obviously, there were signs that something is wrong with me but I also thought that is just who I am. A little emotional at times, a little sensitive, a little too organised, a little impulsive, a little too much into lists and a little hysterical when it’s bad. For 51 years I thought that I am just a little too much, but now I know it’s more than just that. I am extremely relieved to know.”

What is Autism Spectrum Disorder?

Autism spectrum disorder (ASD) is a neurodevelopmental disorder often explained as similar to a colour wheel because people with ASD experience its challenges differently.  Generally speaking, people with ASD experience challenges with social interaction, and demonstrate restrictive and repetitive patterns of behaviours, interests and/or activities. No two people have the exact same ASD challenges.(Steer, Golding & Bolton, 2010).

ASD and Gender

One of the main arguments used to explain the difference in the numbers of ASD diagnosis in boys and girls is that women tend to be more socially-able and better able to mask the challenges they are experiencing.  Girls who are diagnosed with ASD, however, tend to have more severe communication difficulties than boys and less expressive and receptive communication skills (Carter et al., 2007). Rivet and Matson (2011).

Research shows that girls and women present with fewer atypical and more severe patterns of restricted behaviours then their male counterparts. Boys tend to show more stereotyped behaviours (Rivet & Matson, 2011; Trubanova, Donlon, Kreiser, Ollendick & White, 2014),  like social avoidance, and patterns of restricted and sensory interests Frazier & Hardan, 2016).

Girls, women and ASD

Please watch this video of women with ASD telling their stories.

Do you notice any patterns regarding the age of diagnosis? Discuss with a partner.

The female protective effect and ASD

The female protective effect describes the ability of girls and women to camouflage their learning challenges and change their emotional and facial expressions to fit in. (Holliday Willey, 2015).

Girls and women, in this case, consciously or unconsciously mimic the facial expressions of the person they are talking to and learn to mask or hide the fact that they aren’t feeling the same emotions. Another way that girls with ASD hide their challenges is that they train themselves to to make eye contact and to refrain from talking about individual interests (Livingston & HappĂ©, 2017). Copying emotional and facial expressions happens all the time, including in the classroom, with friends and/or family.

In many schools that work on developing students’ social-emotional skills, teachers use resources like facial expression cards (see Figure 1) to help students describe and discuss their emotions. This might be another way that girls learn how to copy the ‘socially appropriate’ way to express their emotions or behaviour. Alternative resource for girls to copy behaviour and emotions might be TV shows/movies, theatre classes, social classes and role-playing games on the playground. We include this because we want teachers to be aware that there are many ways for girls and women to learn how they can mask their ASD and how they can learn to understand others.

 

identifying emotions
An app developed by Wall could help children with autism learn to understand facial expressions. | iStock/Joan Vincent CantĂł Roig

This camouflaging phenomenon makes it so hard for psychologists, teachers or parents to identify when girls at a young age show symptoms of either ASD or ADHD. We think it’s interesting that this phenomenon is called the female protective effect, because although girls and women use it to hide their differences, they it also acts as an obstacle in terms of getting the support they need.

The article, The Female Autism Phenotype and Camouflaging: A Narrative Review, stresses that possible consequences of camouflaging include emotional and physical exhaustion that can cause women to need time alone to recover from and that the effect on women’s sense of identity can be profound. (Hull, Petrides & Mandy, 2020).

Masking

Masking is another term for camouflaging and means that people hide their ASD traits to fit into the societal standard of normal (Dean, Harwood & Kasari, 2017), and this is often done by women and girls with ASD.

Women mimic behaviours and adopt social scripts to try and meet the social expectations placed on them. Often other psychiatric disorders, e.g. depression and anxiety can also mask the ASD symptoms and this is why women are often diagnosed later in life (Trubanova, Donlon, Kreiser, Ollendick & White, 2014).

Look back at the story of Ginny

In what way could the ‘female protective effect’ have played a role in the non-diagnosis of Ginny?

 

 

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Inclusive Perspectives in Primary Education Copyright © 2021 by room305 and Inclusive Education Class 2020-2021 is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, except where otherwise noted.

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