New research reinforces the importance of having access to the Autistic identity as a tool to navigate a world structured around neurotypical ideals, writes Autistic researcher Anastasia Greenwood-Boot.

24 October 2023 – I am Autistic and a Massey University Master’s student. I am currently developing a screening or diagnostic tool that is more sensitive to gender differences within autism The next step will be a survey of adult non-males in Aotearoa to explore differences further. My supervisor, the utterly incredible Kathryn McGuigan, is supporting me in this project.

Outside of academia, I have a fantastic husband and we have three brilliant and cheeky kids. We are surrounded by dogs and whānau who brighten and fulfil my life.

In 2022, I interviewed five self-identified Autistic women to gain a better understanding of their worldview. I chose self-identified Autistic women because these women are often overlooked by current systems and researchers. Using interviews, I was able to find themes which were common across the women’s lives. This article summarises the themes found across the interviews. These include: the use of a social script to mould their lives, the separation of the self from the ‘real’ social experience and the necessity to understand their energy use to successfully navigate the neurotypical world. Ultimately, the research underscores the value of the Autistic identity as a tool for successfully navigating a world structured around neurotypical norms.   

Theme: Social scripts 

This theme captured ‘Learning the life script.’ This entails learning and applying life’s rules and how the women utilise these rules to alter their behaviour in diverse situations. Women described a need to grasp and follow the social script – to fully integrate into society. They worked out early in life what is expected (e.g., marriage, children, university). However, following this script left them with feelings of instability when they came to the realisation that the script doesn’t adequately fill a life, and once finished there is a need to “add more stuff to your list”.  According to this study, awareness of the adaptability of the script may be the difference between Autistic and non-Autistic people. Rather than being a guide to life, the script becomes a checklist of tasks to be performed. So while this allowed women to assimilate into the neurotypical world, it ultimately leads to feelings of unfulfillment of their own identity. The way the women worked towards this script tied in nicely with the goal-oriented focus that these women all possessed. 

“I have been constantly striving to reach this imaginary point where I finally have it all together, where I finally fit in where it makes sense.”

Theme: Dark periods, Burn out, but not necessarily depression 

Dark periods were discussed by all women and, importantly, separated from the idea of depression. Dark periods frequently occurred while participants were attempting to live within the typical social script. It seemed crucial to the women to work in positions that allow them to interact in ways that maintain their energy, special interests, and interactions with others.  Interactions that involve compensation and masking require more energy to maintain. These appear to lead to burnout more quickly. Furthermore, dark times frequently followed having children, perhaps because this typically coincided with the social script being ‘finished’. As a result, the women in this study discussed these occasions as times when they were no longer able to maintain the social script’s facade. 

Outside of a dark period the other area these women discussed was burnout. Burnout was described as times of complete exhaustion. It was often a time where their Autism diagnosis began to make sense in terms of understanding themselves. It was through the complete and utter burnouts they experienced that these women began to look towards their energy levels and what drains or replenishes them. An autism diagnosis allowed them to better understand themselves, to research, and then use this research to make differences to their lives. This resulted in reduced masking and reduced burnouts. This identification of the Autistic self supports the idea that it is not an Autistic brain that creates a burnout, but rather burnout comes from attempting to fit your identity into that of another. Overall, understanding themselves as Autistic allowed these women to better understand their strengths while balancing their difficulties in a way that did not condemn themselves. 

Theme: Disconnection 

The women talked a lot about their time growing up. From the outside it would look as if they were part of the group. But to the women, it felt as if they were looking at the world through a veil. Although they were standing and talking with the group, they felt on a different wavelength.  

“That feeling of difference that you can’t quite put your finger on.”

Disconnection from the social environment can make it difficult to understand social interactions, such as the distinction between a friend and an acquaintance. As the women grew more comfortable in their relationships and began to remove the mask, they revealed more of their true selves. Because others did not understand this transition, social interactions frequently failed. 

“Relationships with people start normal, and then the mask slips. They see the real me, and they like me less.”

As the mask was withdrawn, a more natural personality emerged. Those around the Autistic women were frequently offended by these differences. When questioned about what others did not like about them, those offended were unable to say. 

As camouflaging in relationships are lessened, non-Autistic adults respond with offence that the Autistic adult no longer makes sense to them. This difference in communication style mimics the difficulties that Autistics face when speaking with neurotypicals.  

“I don’t understand you; I can’t figure you out.”

Participant on the responses she gets from others. 

The women describe a distinction between neurotypicals and themselves in the processing of ideas. They often found neurotypicals don’t make the connections in the same way.

“A train that goes from here to there, and I can make a connection; they don’t have to keep talking. I’m done. As a kid, people found this frustrating, but I already knew what people were going to say.”

Special interests 

Autistic women’s energy flow seems to be critical to their success in life. Understanding their own energy levels and capacities has allowed them to discover areas of life in which they excel, such as human research or statistics. When women can use their special interests within their work and the job becomes more satisfying and exciting. An example of utilising the neurodiverse mind. 

 “Oh my God, my brain was so happy. I could picture the entire UK based on its postcode. I could do Paris based on their postcode? I could tell you where things were in the world based on their postcode.”

Special interests can also be energy draining, especially when they do not fit within the existing space. Several participants mentioned the challenges they encountered while attempting to divert their attention away from their special interests instead talking about them as obsessions. One woman believed, for example, the nature of these contributed to her divorce, while another highlighted how exhausting they were when they became all-consuming. 

Theme: Sacrificing the self  

All of the women struggled to make sense of themselves and to fit in. Many of them responded with increasing self-doubt, increased self-control and ultimately burn out from attempting to fit within the neurotypical expectations. Social anxiety developed in all women as they had to shape their personalities to match the acceptable mould. As a result, they frequently present as introverts, diligently obeying and enforcing the social rules in order to protect themselves from the negative judgement they have received when they let down their armour. 

“I can be highly extroverted in the right company.”

Social gatherings are avoided or carefully navigated, with people frequently taking on roles such as “turning the sausages,” [at a BBQ] which provides distractions from discussions and a clear rule to follow. Another way to navigate the world was to classify ‘relationships’ as short term affairs, never staying long enough in any one group for their mask to drop.  

“[I] flit between groups without overstaying my welcome.”

While these strategies assist in regulating their social appearance, they also gradually lead to individuals becoming more distanced from society as they efficiently avoid novel interactions. Many of the women talk about their autism diagnosis as paving the way to learning to be themselves in these types of social interactions making them more enjoyable. 

Conclusion

The themes identified in this research highlighted the complexities of navigating their social world for the five women. They also illustrated how much of their lives has been influenced by this sense of wondering who they are. The women in the study were specific in their reasons for sharing their journey, which was to help others traverse theirs more easily. 

While it is important to note that self-diagnosis is not considered as valid by many, a diagnosis can be out of reach due to financial concerns, stigma, and shame.  It does not mean these participants’ experiences are invalid. The participants themselves had their own misgivings about self-diagnosis.  

“It’s been quite difficult for me with the self-diagnosis. Like a lot of impostor syndrome, a lot of Oh, no, I’m not, I’m just, oh my god. I’m just making it all up. I’m just imagining it. I’m just putting on myself. I’m just assimilating I’m, I’m, you know, mirroring what I’m seeing, which again as an Autistic thing”?

In summary, the experiences of the self-identified women in this research reflect past research of diagnosed Autistic women who described feeling detached from the world and a sense of alienation as common experiences. However, what was new was the idea of the life script and the focus on managing energy. This research reinforces the importance of having access to the Autistic identity as a tool to navigate a world structured around neurotypical ideals. 

References 

Dukes, S. L. (2021). ‘I feel I’m no longer an alien’: The experiences of females who receive a diagnosis of Autism Spectrum Condition late in life: A thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Auckland, New Zealand: Vol. Master of Arts (MA) [Masters, Massey University]. http://hdl.handle.net/10179/16986 

• Anastasia Greenwood-Boot joined us for a video interview to further discuss her findings. Watch it online on our Youtube Channel.
• Anastasia Greenwood-Boot (BSC (Honours) in Psychology) is an Autistic researcher who is currently studying for her Masters in Psychology at Massey University.
• This research was supervised by Dr Kathryn McGuigan, Lecturer, Massey University.
• This article has been shared as a companion piece to the 2023 Altogether Autism Journal. Fill in our online form to get the FREE Altogether Autism Journal delivered to you by post or via email.