Autistic women’s experiences of diagnosis

Acceptance after diagnosis is essential
for the well-being of autistic women

Research shows autistic women struggle with significant exhaustion from trying to hide their difficulties and conform to societal expectations. Participants felt that diagnosis often helped them understand their needs and be kinder to themselves. Diagnosis also helped women interpret what had happened to them in the past. Finally, it helped them connect with a community and improve relationships. While a diagnosis identifying that a woman has autism is the most significant factor in her future well-being, research shows that acceptance post-diagnosis is essential for autistic women.

Having never viewed autism through the prism of disadvantage, I saw my autism diagnosis in a positive light. Before my diagnosis, I felt constantly misunderstood and lonely. Though I was camouflaging significantly, I never felt any real effort by others to understand me. I suspect most people did not know that I was not what I seemed.

My diagnosis also led me to review my whole life and the experiences I had within the framework of autism. The heightened empathy to the degree that I always needed to solve friends’ problems so that they and I could feel better. An obsession with the colour purple. The sensory differences, such as gagging from certain foods. I preferred sameness, such as drinking smoothies daily, eating pasta with ketchup daily for about a year, or repeating a song on a loop until I eventually got sick of it. A voracious thirst for knowledge. The avoidance of social situations when at all possible. And so on. This review consumed me for many years, and now, seven years post-diagnosis, I still uncover new information to contextualize my life as the research pours in.

I found my community; this was extremely important to me, and for the first time, I no longer felt alone. I wanted to decipher more about myself, an adult with autism, and educate people with evidence-based research.

It can be difficult for women to accept
their diagnosis due to stereotypes of autism

After some time, my imposter syndrome left, and I felt accepted by the people who were important to me. In addition, I now had the framework, knowledge, and awareness to understand myself and my social and communication differences. For the first time, I felt like I could be me. 

I was able to be kinder to myself after diagnosis. Knowledge about my neurodiverse brain’s drive to be perfectionistic and find the errors, including those in myself, allowed me to begin counteracting my automatic negative thoughts. I wrote notes to myself, such as:

Never let yourself complete a negative sentence
about yourself, even in your head.

I began to work ardently at choosing which thoughts I would allow and those I would banish. Knowing that I am autistic rather than flawed to my core allowed me to opt for the company of people who liked me. I realized that I would never like myself as long as I kept listening to and including people who did not like me.

In addition, I now had language for my needs and could better communicate these needs to my friends and colleagues, which helped me improve my relationships. I understood that I was trying to conform to societal expectations, resulting in significant exhaustion, anxiety, and depression.

Once diagnosed, my imposter syndrome was significant and lasted about three years. First, I had to come to terms with the fact that I had not recognized I was autistic despite working with autistic clients. Second, my friends and family were struggling with seeing me as autistic because of their outdated conceptions of autism. I spent a fair amount of time defending my autism diagnosis while struggling with believing it myself. The resolution was a second, independent diagnosis.

Research shows that when we shift our perspective of autism from incapable to capable, autistics become capable, creating a positive ripple effect on society. Still present in society is the perception of autism as a disability and the concept of people with a disability being ‘incapable’.^[1]Shifting the perspective from ‘incapable’ to ‘capable’ for artists with cognitive disability; case studies in Australia and South Korea (Yoon, Ellison, & Essl, 2020)

Positive & negative experiences

Research collected from data from 20+ blog sites showed that other autistic women had similar positive and negative experiences to my own.^[2]The Quest for Acceptance: A Blog-Based Study of Autistic Women’s Experiences and Well-Being During Autism Identification and Diagnosis (Harmens, Sedgewick, & Hobson, 2021)

Feelings of belonging and acceptance were essential post-diagnosis. Three themes emerged from the analysis:

1. The ability to understand and accept oneself
2. Understanding and being accepted by others
3. Exhaustion

Diagnoses often helped study participants understand their needs and treat themselves kinder. After receiving a diagnosis, women also better understood what had happened to them in the past. They were also able to connect with a community and improve their relationships. However, it was difficult for women to accept their autism diagnosis due to stereotypes. Imposter syndrome occurs when they feel they do not fit an autism diagnosis. The struggle for acceptance—before and after their autism diagnosis—can be exhausting. Hiding their difficulties or explaining why they did not fit stereotypes are contributing factors.

Acceptance after diagnosis is essential for the well-being of women with autism. When women feel unaccepted by others, it can negatively affect their self-esteem and disrupt the benefits a diagnosis can have.

After receiving a diagnosis, women were better able
to make sense of what happened in their pasts

Positive

• Being kinder to themselves
• Understanding their needs
• Making sense of the past
• Connection with a community
• Improved relationships

Reactions after diagnosis

Psychological reactions to autism after an autism diagnosis includes:

• Relief: 79%
• Excitement: 29%
• Disbelief: 13%
• Rage from not knowing earlier: 5%

Reactions 1 year after diagnosis

Psychological reactions to autism 1 year after an autism diagnosis includes:

• Felt better about oneself: 67%
• No change: 22%
• Make sense of who I am
• My depression lifted without medication

Negative

• After diagnosis facing male stereotypes of autism
• Facing a lack of acceptance from others could impact on women’s self-acceptance
• Need guidance in how to manage being told they do not appear autistic
• Or fit people’s expectations of autism
• Psychiatry uses a deficit-based model and ‘disordering’ can be harmful to an individual’s self-esteem

Reactions to autism over time

In the table below, you can see the different psychological reactions to autism over time.

Older Autistic Adults, In Their Own Words: The Lost Generation (Wake, Lagos, & Endlich, 2021)

Women diagnosed with autism will benefit from support designed to help them cope when told they do not appear to be autistic or that their appearance does not fit what people expect. The difficulty women have faced managing without recognizing that they are autistic must be acknowledged when seeking a diagnosis. Despite women’s ability to mask, clinicians should avoid minimizing underlying issues. Educating professionals about autism in women and challenging stereotypes associated with autism are critical.

You can be happy with autism or miserable with autism.
Personally. I prefer happy!

Strategies that help post-diagnosis

• Increase self-awareness, positive sense of self, and self-acceptance
• Find neurotribe or flexible neurotypicals
• Use Energy Accounting
• Mentors or social coaches/guides
• Develop self-regulation/anxiety management strategies
• Literature on reading body language and social communication strategies

Further reading

Below are two books that could provide further help in dealing with being autistic as a woman.

Spectrum Women: Walking to the Beat of Autism Cook & Garnett, 2023

Autism in Heels: The Untold Story of a Female Life on the Spectrum O’Toole, 2021