A road map to diagnosis and support for autistic women in higher education

From the journey to diagnosis to the laws that protect employees with autism, this resource sheds light on how to navigate the academic world with this disorder

Imogen Varle's avatar
De Montfort University
29 Feb 2024
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Female autistic student with noise-cancelling earphones writing in a notepad

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Being a woman with autism spectrum disorder (ASD) in higher education, I thrive in a progressive environment where autism’s positive traits are often celebrated. Qualities such as hyperfocus, meticulous attention to detail, exceptional memory and efficiency are not just beneficial for researchers but also for staff members like me working in student well-being teams. In my role, I can channel my creativity and autonomy to support our students effectively.

However, this experience isn’t universal. A critical issue that needs addressing is the frequent underdiagnosis and misunderstanding of ASD in women. My late diagnosis at 28, despite having siblings with ASD and ADHD, is a testament to this challenge. My diagnosis, while validating, also shed light on the reason behind the struggles I faced growing up and in my career, such as my reliance on colour-coded “to-do” lists and my indifference towards casual friendships. Let’s delve into the diagnosis process and explore how to find support within the academic setting.

If you’re contemplating seeking a diagnosis, there are typically two routes. The first involves consulting your GP for a referral to a local adult autism assessment service. My experience involved an initial one-hour assessment, followed by a more extensive four-hour session (though it can last up to eight hours) and, finally, a meeting to discuss the findings. While time-consuming, this journey is invaluable for gaining insights into your thought processes and behaviours. Having a close acquaintance or family member with you during this process can be beneficial. I had the support of my mother and husband, but recognise that this might not be feasible for everyone.

Alternatively, you can exercise your “right to choose”, a policy that allows patients in some healthcare systems, like the NHS in the UK, to choose where they receive certain healthcare services. This means you have the option to select from different providers for your autism assessment, potentially reducing waiting times and allowing you to find a service that you feel more comfortable with. It’s important to research and understand the options available in your area, as this can significantly impact your experience and the speed of the diagnostic process.

Post-diagnosis, or if you’re already diagnosed, the next step is seeking appropriate support.

In university settings, a good starting point for accommodation support is to have a conversation with your manager. However, disclosing your diagnosis can be daunting. Many universities operate under equality, diversity and inclusion (EDI) policies and schemes. If you’re anxious about discussing your ASD directly with your manager, consider speaking first with your university’s EDI lead. They can provide guidance and support, making the disclosure process more comfortable and ensuring that your needs are understood and met.

If you choose to disclose, it’s important to remember that you are protected by the Equality Act and the Public Sector Equality Duty, which universities are required to uphold. The Equality Act safeguards individuals from discrimination in the workplace and in wider society, ensuring that your rights are respected and that your employer makes reasonable adjustments to accommodate your needs. The Public Sector Equality Duty further mandates that public institutions, such as universities, actively consider the need to eliminate discrimination, advance equality of opportunity and foster good relations between different people when making decisions about policies and services.

This can lead to support options like Access to Work, which might offer tools such as noise-cancelling headphones or a mentor for regular discussions. Occupational health referrals can also be beneficial, with practitioners being able to suggest changes such as a quieter workspace or a private office as opposed to an open-plan setting. Additionally, consider self-initiated adjustments such as prioritising tasks, using headphones to minimise distractions and having stim-related tools such as a fidget ring.

Last, explore if your university has supportive staff networks, like disability and wellness groups. These can be invaluable for sharing experiences and strategies to navigate academic life with ASD.

Navigating autism as a woman in academia involves understanding the unique challenges and opportunities it presents. From the often-late diagnosis of ASD in women to finding effective support systems within academic institutions, this journey is both personal and universal. By exploring diagnosis options, understanding workplace rights under the Equality Act and using available resources such as EDI policies and staff networks, women with ASD can find empowerment and success in their academic careers. Remember, seeking support and making informed choices are key steps in this journey, ensuring a fulfilling and accommodating academic experience.

Imogen Varle is the mental health intervention officer at De Montfort University.

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