Why write a book?

In writing a book about late diagnosis of autism in women, the aim is to create awareness of the challenges for women in receiving an autism diagnosis. By creating awareness and through the sharing of stories, it is hoped that community can be created where readers will see aspects of themselves echoed in the stories that they read.

Seeing one’s self reflected in stories is important because it validates who we are and provides connection in knowing that we are not the only ones experiencing life as an autistic individual. For some women who receive a late diagnosis of autism, the diagnosis can help normalise autistic traits so that they are viewed through a lens of strengths, not deficits.

The book will share stories of what it is like to receive an autism diagnosis later in life, what led to the diagnosis, and how the diagnosis has changed perceptions within oneself as well as changes in social and family networks. Each chapter will reveal a new story of lived experience and will likely cover themes such as masking, social interaction, parenting and employment.

If you would like to participate in the research, please read the participant information sheet to see if you are a good fit for the research before completing the questionnaire. Looking forward to hearing from you!

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I’d love to know…

In the book, I’m looking to include a list of resources such as books, blogs, podcasts, and articles that have helped in the journey to autism diagnosis.

I’d love to hear from you – do you have any resources that you would recommend for people who are experiencing their own journey to autism diagnosis and post-diagnosis?

Sensory strategies

Looking up into the branches of two purple, flowering trees.

One of the questions that I ask of the participants sharing their story of late autism diagnosis, is what strategies they use to help with sensory sensitivities. I’ve loved hearing what they do or what they use.

Sensory sensitivities can be different for each individual. For some of the participants, bright lights are an issue. For others, it can be sounds, or lots of movements – including crowds, or it could be smells.

Social situations can exacerbate sensory sensitivities and a number of those who have shared their story say that they can only manage a certain amount of time in a social situation before the input becomes too much.

I thought I’d share with you some of the strategies that the participants use to manage an overwhelming sensory environment. This can help for those who are autistic, and it can help allies of autistic people too.

Sensory strategies:

  • Listening to music, and often listening to the same sounds on repeat
  • Going for a walk
  • Companionship of pets
  • Use of fidget toys
  • Repetitive activities such as knitting, crocheting or doing a jigsaw puzzle
  • Wearing noise-cancelling headphones
  • Wearing sunglasses
  • Using a weighted blanket
  • Sitting in silence

For many of the book participants, being aware of personal limits is one of the best strategies. For example, knowing that a noisy café is going to have too much sensory input can allow the person to set a time limit on being there. Knowing limits also allows the freedom to have rest and recovery time. This can include being in nature, sitting in silence, and having sensory-friendly items on hand.

Impact of diagnosis

Sharing stories about the journey to autism diagnosis helps others to know that they are not alone. There are a community of others who understand.

Matilda*, a participant sharing her story for the book about journeys to late diagnosis of autism, recognised that she was not broken, and did not need to try harder to ‘fix’ herself. The diagnosis of autism brought with it the recognition that she was complete and perfect the way she was. And that she could give herself permission to look after herself and her needs.

Sharing stories helps create awareness and acceptance of what autism is. That autism is a broad and diverse spectrum. And that there are others who understand.

*a pseudonym

If you would like to share your story of the journey to late diagnosis of autism, please read the participant information sheet to see if you are a good fit before completing the questionnaire. Looking forward to hearing from you!

A Spectrum

What does autism look like to you?

The former stereotypes of autism are beginning to fade and more is becoming known about the broad spectrum of autism where autistic people may look different than previously thought.

Part of the purpose of writing a book about adult diagnosis of autism is to highlight the differences in autistic presentation. From those who have shared their stories so far, there are people who

  • are single
  • are married
  • are parents
  • love crafting
  • have pets
  • are active as advocates
  • play music, and
  • are involved in theatre

And this is just from a sample of autistic people.

What stands out is that each of these individuals were diagnosed as autistic in adulthood. Their autism went undiagnosed through their growing up years and it is only after diagnosis that they are more aware of why they were different to their peers. Now they are able to share depth of insight and understanding about themselves.

Their stories are so engaging and it is vital that their stories – and others – are shared so that autism is recognised within the full spectrum.

Are you interested in sharing your story of adult diagnosis of autism? If you would like to participate, please read the participant information sheet to see if you are a good fit before completing the questionnaire. It would be great to hear your story.

Masking

Masking, also known as camouflaging, is where an autistic person may imitate others, hide autistic traits such as stimming, or take on a persona in order to fit in socially1.

Questions have been raised about masking and late diagnosis of autism. It has been suggested that the ability to mask – or camouflage – is common in women2 and may mean that an autism diagnosis is delayed or not given3.

Masking has benefits short-term as social connections can be formed and employment gained, but long-term there has been evidence to show that masking is related to mental health difficulties4. The impact on mental health can be partly attributed to the exhaustion of masking the true self.

Whilst masking is shown to be a coping strategy for autistic individuals5, it is important for autistic individuals to have time and space to be authentic, to engage in special interests, and to rest and recuperate6.

Is masking something that you do? Or are you unsure if you mask? You may be interested in reading some real life stories about masking:

1. Russo (2018). The costs of camouflaging autism

2. Barnes (2022). “No you’re not” – a portrait of autistic women

3. Luterman (2022). What Demi Burnett’s announcement means to autistic women

Are you interested in sharing your story of late diagnosis of autism in
females?

If so, read more about what is involved here.


 

Footnotes:

1 Allely, 2019; Bargiela et al., 2016

2 Cridland et al., 2014; Dachez & Ndobo, 2018; Green et al., 2019; McQuaid et al., 2021

3 Allely, 2019

4 Cage & Troxell-Whitman, 2019

5 Dachez & Ndobo, 2018

6 Hull et al., 2017


 

References:

Allely, C. S. (2019). Understanding and recognising the female phenotype of autism spectrum disorder and the “camouflage” hypothesis: a systematic PRISMA review. Advances in Autism, 5(1), 14-37. doi:http://dx.doi.org/10.1108/AIA-09-2018-0036

Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281-3294. doi:http://dx.doi.org/10.1007/s10803-016-2872-8

Cage, E., & Troxell-Whitman, Z. (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults. Journal of Autism and Developmental Disorders, 49(5), 1899-1911. doi:http://dx.doi.org/10.1007/s10803-018-03878-x

Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a Girl in a Boys’ World: Investigating the Experiences of Girls with Autism Spectrum Disorders During Adolescence. Journal of Autism and Developmental Disorders, 44(6), 1261-1274. doi:http://dx.doi.org/10.1007/s10803-013-1985-6

Dachez, J., & Ndobo, A. (2018). Coping Strategies of Adults with High-Functioning Autism: A Qualitative Analysis. Journal of Adult Development, 25(2), 86-95. doi:http://dx.doi.org/10.1007/s10804-017-9278-5

Green, R. M., Travers, A. M., Howe, Y., & McDougle, C. J. (2019). Women and Autism Spectrum Disorder: Diagnosis and Implications for Treatment of Adolescents and Adults. Current Psychiatry Reports, 21(4), 22. doi:10.1007/s11920-019-1006-3

Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-cohen, S., Lai, M.-c., & Mandy, W. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, 47(8), 2519-2534. doi:http://dx.doi.org/10.1007/s10803-017-3166-5

McQuaid, G. A., Lee, N. R., & Wallace, G. L. (2021). Camouflaging in autism spectrum disorder: Examining the roles of sex, gender identity, and diagnostic timing. Autism, 13623613211042131. doi:10.1177/13623613211042131