The Female Experience of Autism Spectrum Disorder (ASD)

Hi, I'm Dr. Courtney! In this article, I provide my bi-weekly research summary on a topic I think may help others in some way. This week I focused on the Female Experience of Autism Spectrum Disorder. I read the research so you don't have to 😌

The Female Experience of Autism Spectrum Disorder (ASD)

What is Autism Spectrum Disorder?

Autism spectrum disorder (ASD) is a developmental disability that affects how people communicate and interact with others, and how they behave. People with ASD may have difficulty with social communication and interaction, restricted or repetitive interests and behaviors, and different ways of learning, moving, or paying attention.

The term "spectrum" refers to the wide range of symptoms and severity that can be seen in people with ASD. Some people with ASD may have mild symptoms that do not interfere with their daily lives, while others may have more severe symptoms that can make it difficult to function in school, work, or social situations. There is no one cause of ASD, but it is thought to be caused by a combination of genetic and environmental factors. ASD is diagnosed based on a child's behavior and development, and there is no medical test for ASD.

Today I'm going to summarize for you the following article: 

Title: A Qualitative Exploration of the Female Experience of Autism Spectrum Disorder (ASD)

Author/s: Milner, V., McIntosh, H., Colvert, E., and Happé, F. 

Publication and Year: Journal of Autism and Developmental Disorders

DOI: 10.1007/s10803-019-03906-4

This article is for anyone who has Autism Spectrum Disorder or experiences autistic traits, or those who care for these individuals in some capacity. If you find this information helpful, please share this article with your community. 

Why Was This Study on Female Autism Spectrum Disorder Important?

The study found that females with ASD may be under-diagnosed due to the use of mainly males in research and the projection of a male model of autism onto women and girls. Females with ASD may also use camouflaging behaviors to fit in with neurotypical peers, which can lead to increased stress and anxiety. The study aimed to gather information from a range of perspectives, both diagnosed and self-diagnosed autistic females and parents of autistic females, to improve our current understanding of the female experience of ASD.

Here are some of the key points from the study:

• The male-to-female ratio in ASD is often overestimated due to the use of male samples in research.
• Females with ASD may present with different symptoms than males, such as more sensory symptoms and fewer socio-communication difficulties.
• Females with ASD may use camouflaging behaviors to fit in with neurotypical peers, which can lead to increased stress and anxiety.
• The study aims to gather information from a range of perspectives to improve the current understanding of the female experience of ASD.

What were the Study Methods?

The current study is part of a large autism research project that aims to investigate female autism. It's the third phase of the Social Relationships Study (SR Study). The SR Study is one of the largest population-based twin studies of cognition and behavior across the full autism spectrum. The researchers conducted discussions with autistic women to identify core issues and themes to be measured, in order to avoid the circularity of relying on questionnaires and tasks derived from largely male-biased autism research.

Who were the Study Participants?

The study included 18 females with a clinical diagnosis of autism or self-diagnosis, and 4 mothers of autistic girls. The participants were from the United Kingdom and ranged in age from 11 to 55 years. The study aimed to be as inclusive as possible by including both clinically diagnosed and self-diagnosed individuals.

What were the Procedures, Methods, and Measures of the Study?

Autistic females and mothers of autistic girls were recruited via social media, word-of-mouth, a secondary school, and a tertiary referral autism diagnostic clinic. Participants could attend group discussions at the research center, in-home individual discussions, or telephone discussions. Four group discussions, seven individual discussions, and four telephone discussions were conducted. Two researchers were present for all discussions, except for telephone interviews where one researcher was present. A topic guide was used for the discussions and included 15 (for the female autism group) or 16 (for the parents) questions, covering three overarching topics: diagnostic pathway, the impact of autism, and resilience and coping.

What were the Results of this Female Autism Spectrum Disorder Study?

Five themes were discovered:

• Fitting in with the norm (friendship motivation, conflict, and maintenance; living in a neurotypical world; the concept of gender; coping strategies)
  • The attempts, both successful and unsuccessful, that women and girls make to attempt to fit in with their peers and society.
• Potential obstacles for autistic women and girls (the struggle of getting a diagnosis; lack of appropriate support)
  • The barriers and difficulties faced by the women and girls.
• Negative aspects of autism (co-morbid conditions; sensory sensitivities; meltdowns/shutdowns; dependence/vulnerability; feeling different)
  • The difficulties faced by the women and girls that are associated with having autism.
• The perspective of others (girls can be autistic too!; parental attitudes)
  • How other people, including peers and family members, understand and are impacted by autism.
• Positive aspects of autism (benefits of autism; accepting autism and understanding why you're different; strong sense of justice)
  • The benefits of being autistic and ways females have learned to understand their disorder.

Example quotes from each of the five Female Autism themes:

• Fitting in with the norm: 
  
  • “All my life is like I didn’t fit in, like I had friends and they weren’t like proper friends and I’d fall out with them”
  • “She is exhausted just by the business of running an ordinary life”
  • “I try to spend as much time alone as I can cos it really does like it gets me in a very calm state of mind so that when I do need to interact with people I’m willing to talk and socialise”
• Potential obstacles for autistic women and girls: 
  • “That’s the trouble with female ASD is in that time slot of whether they’re going to say yes or no to your diagnosis you could be performing or camouflaging so well that they’re not going to see that”
  • “Back in the day they didn’t really help me, they just put me down to really being a naughty child”
• Negative aspects of autism:
  • “If you could take away that anxiety, that, then I think we could fly”
  • “The sensory issues are just, it’s the most difficult thing in the world and it’s so distressing and it really does make a difference between I think um having life quality or not for me”
  • “I’m prey in the world of predators”
  • “I knew that I was different, all, always knew I was different, always I knew it, in so many ways that it’s just unbelievable”
• The perspective of others:
  • “It’s almost like, um, it would be contagious or something like that, it’s like keep my children away”
  • “You grieve for the child that you didn’t know you thought you had…will she ever get married; will she ever go to university…”
• Positive aspects of autism:
  • “I’m starting to appreciate more and more that like the way I see the world is, can be a benefit”
  • “She has this fantastic moral compass and she always wants to stick up for people”
  • “It’s part of what makes me, me so yeah I’m happy you know it’s there, I certainly wouldn’t take it away”

What This Study Taught Us

This study aimed to explore the experiences of females with autism and minimize the circularity of exploring female autism within a primarily male-biased field. The study found that females with autism often use masking and camouflaging behaviors to fit in with neurotypical peers. The study also found that females with autism are often socially motivated and want friendships, but they may have difficulty initiating and maintaining relationships.

A lack of understanding about female autism symptomology can lead to delayed diagnosis and delayed access to support. However, despite the challenges, the study also found that females with autism identified several positive aspects of being autistic.

If you are someone who feels they may be a female with autism who has yet to be diagnosed, here are some specific questions or statements you can share with your doctor or other medical or mental health professional.

Here are some questions you can ask yourself if you think you may have autism:

• Do I have difficulty understanding and responding to social cues?
• Do I have difficulty making friends?
• Do I have repetitive interests or activities?
• Do I have difficulty with change?
• Do I have sensory sensitivities?
• Do I have difficulty with executive functioning skills, such as planning and organization?
• Do I have difficulty with emotional regulation?
• Do I have a history of anxiety or depression?

If you answer yes to any of these questions, it is important to talk to your doctor. They can help you assess your symptoms and determine if you may have autism.

Here are some questions you can ask your doctor/therapist:

• What are the signs and symptoms of autism in females?
• How is autism diagnosed?
• What are the treatment options for autism?
• What are the long-term effects of autism?
• Are there any support groups or resources for females with autism?

It is important to remember that every person with autism is different, so your doctor or other healthcare provider will be able to give you the most accurate information based on your individual situation.

Thanks for reading and see you in a couple of weeks! If you haven't checked out this week's other article titled "HBO's The Idol: A Horrific Depiction of Mental Health Issues", check it out to see whether or not you want to watch this series (if you're lucky enough to not have seen it yet).

Remember: You're a human first, your unconscious is showing, and I'm so glad you exist.

Written by Dr. Courtney Tracy, LCSW, PsyD aka "The Truth Doctor"