Finding Self-Acceptance: Autism Spectrum Disorder and a PhD by Daisy Shearer

I’ve been an anxious person for as long as I can remember, but it wasn’t until late high school that I started to develop depression, and I was not formally assessed for my mental illnesses until the penultimate year of my MPhys degree. Armed with a diagnosis of Generalised Anxiety Disorder as well as Major Depressive Disorder (which are often comorbid), I was put on anti-depressants (which I still take to this day) as well as starting therapy. Both of these treatments have helped me somewhat, but I continue to have a lot of trouble just navigating life without getting overwhelmed and still struggle to understand the social world around me at times. 

Seeking an Autism Assessment

Following an autism diagnosis of a close family member, I started to research autism and discovered that autism often presents very differently in females compared to males. For example, girls on the spectrum are more likely to develop mechanisms for camouflaging autism symptoms through mimicry of their peers and tend to withdraw into themselves rather than being disruptive. As such, the autism diagnostic criteria fails to identify autism in girls unless they exhibit more pronounced behaviours or have additional intellectual disability. I also found that it was a common experience for people, especially girls, on the spectrum to develop depression and anxiety around the age of puberty— this was exactly what happened to me. I had so often been asked by doctors and therapists about whether there was some triggering event that caused the onset of my anxiety and depression, but I could never think of one. I now believe that they developed simply as a result of the social rules becoming more complicated during adolescence which exacerbated the mismatch between my desire to fit in with my peers and my social communication differences.

The more accounts I read describing the experiences of autistic women who were diagnosed late in life, the more I realised that my own life was being reflected back at me in these stories. I went through the diagnostic criteria for Autism Spectrum Disorder (ASD) and found that I did in fact seem to fit the diagnosis even if I didn’t present autistic traits in the same way as is portrayed in the media.

At this point in my academic career I was halfway through a research placement at the Centre for Integrated Photonics where I was a research and development intern doing research for my master’s thesis. Luckily, I was also living at home with my parents who supported me in my quest to get better. I ran my hypothesis by my parents and they agreed to take me to my doctor so that I could get a full autism assessment.

Many months later, we were given an appointment for me to be assessed. My parents and I had to fill out some questionnaires about my life and development before the appointment. My mum also had to come along to answer questions in person about my history, development and how I behaved as a child. I was terrified and so full of doubt all the way through the day-long assessment and in the weeks running up to it. After talking things through with my mum, we agreed to try and be as objective as possible during the assessment to the point that we were probably downplaying my autistic traits. Even so, the diagnostic team were certain in their diagnosis of Autism Spectrum Disorder (ASD).

So, I finally had my answer. I was autistic as well as having depression and anxiety. It felt like all of my life experiences and behaviours that I had previously never understood and bullied myself about finally made complete sense.

My autism diagnosis was one of the most empowering experiences I’ve had in my life to date and has allowed me to treat myself with more compassion.

Finding Support at University

After my diagnosis, I connected with the disability support at university for the last semester of my degree which helped enormously. I was given a specialist mentor (aka my non-medical helper provided through disabled students allowance) with autism expertise, as well as reasonable adjustments in examinations to combat sensory differences and reduce the risk of sensory overload. With appropriate support my final set of exams went well, and I graduated with first-class honours. This gave me the confidence to pursue a physics PhD in quantum technology at the University of Surrey’s Advanced Technology Institute. 

While looking into disability support I also discovered that mental illnesses are also supported at university in the UK by disabled students’ allowance. So I probably could have accessed support a bit sooner (albeit the support would have not with the whole picture in mind) just with my mental illness diagnoses. Unfortunately, disability support still requires diagnostic evidence, leaving many people without a formal  diagnosis (which can be hard to obtain due to factors such as monetary issues) to struggle by themselves. In addition, a lot of students with mental illnesses don’t consider themselves disabled and hence don’t realise that there is all this potential support there. It wasn’t until my autism diagnosis that I finally came to accept that the challenges I face daily are profound enough to constitute a disability (at least using the legal definition) which lead to finding the support I needed.

In some ways, I think that my mental illnesses are sometimes more disabling than my autistic brain trying to function in a neurotypical society. I believe that we should try to make it as easy as possible for those who need it to access support, even without official diagnoses of conditions. That’s why it’s so important to have open discussions about mental health which can lead to much-needed signposting to appropriate services and resources.

Untangling Autism and Mental Illnesses

Since my autism diagnosis, I’ve spent a lot of time untangling symptoms that are a result of my neurotype from those that stem from my mental illnesses. This is particularly challenging as they all have a lot of overlapping symptoms. There is also the fact that my mental illness can be exacerbated by autistic experience and vice versa. As well as this, it’s very common for autistic people to experience mental health conditions. In fact, it’s thought that the high suicide rate in the autistic population is partially a result of the mental illnesses such as depression that so often come hand in hand.

It’s important to note that autism is not considered a mental illness; it’s a neurodevelopmental disorder. This means that it’s a result of brain functioning impacting on the behaviour, memory, learning etc. of a person which has been present through their whole life all the way from childhood. Autism is a spectrum condition, so it’s experienced in a myriad of different ways, in the same way that all non-autistic (allistic) people experience the world slightly differently. There’s evidence that autism can be accompanied by specific mental health challenges that aren’t necessarily taken into account during mental health support.

Over the past few years, I’ve come to accept that there are some instances where I will never know whether an experience, feeling or behaviour is caused by the ASD or anxiety or depression. The likelihood is that the challenges I encounter are due to a combination of the way my brain is wired and the chemical imbalances of my brain. Luckily, with the help of autism and mental health professionals I now have a wide variety of techniques to try if I start encountering an issue no matter what the cause of it is. While this practical approach is very valuable, I do think is important to acknowledge the fact that autism can make treatment of comorbid mental illnesses more nuanced and that being autistic doesn’t mean I can’t recover from, or at least manage, my anxiety and depression.

The Challenge of Disclosing

When it came to the start of my PhD, I didn’t disclose my autism diagnosis to my supervisor until a few months in. Looking back, I realise that the stigma surrounding autism and lack of public understanding of the diversity of the autistic experience had a huge part to play in this. I felt similar about my mental illnesses and kept it private as I believed that it wasn’t acceptable to have candid conversations about mental health and disability in an academic setting. Now I firmly believe that opening up the conversation about both mental health and neurodiversity in the academic workplace is so important to the wellbeing of everyone. 

I commenced my PhD less than a year since my autism diagnosis, so I was still processing and coming to terms with it all. I hoped that by keeping it to myself, I would somehow be able to manage things by myself, but it only took a few short months for the constant camouflaging of my autistic traits to take its toll on my mental health. It got to the point where I was exhausted and terrified to set foot on campus, so after a discussion with my specialist mentor we wrote a disclosure email to my supervisor. We approached this by stating that I was autistic and listing some ways in which it impacts me personally and how he could help support me in that. We also put in place some reasonable adjustments such as access to a private room where I could turn all the lights off if I felt I was approaching sensory overload. Since then, everyone has been very supportive in learning what they can do to help. It’s been a challenge for colleagues to adapt to a different way of communicating with me and to understand that my work flow is different as is my processing style, but they’ve been open to learning which has meant I can now ‘unmask’ more, giving me much more energy and cognitive space for my work.

Disclosure is such a difficult thing to do, especially when you have a condition that isn’t necessarily obvious from just looking at you. Sometimes I worry that I may be discriminated against for future jobs due to both my gender and my autism because I’m now so open about it online that I couldn’t hide the fact from a potential employer even if I tried.

On the other hand, I don’t really want to work with anyone who isn’t willing to accept my differences. I want to work with people who can support me and who allow me to lean into the strengths that come along with my neurodivergence even if it means I work in different ways to the norm.

Where I’m at Now

In October 2020 it will be two years since I started my PhD and I’m finally at a place where I can confidently say that I am managing both my mental illnesses and my neurodivergence well. In fact, I’m leaning into it and embracing my differences and the unique perspective I can bring to my work. I’m at a place mentally where I can honestly say that I accept myself for who I am—autism and mental illnesses included. It’s taken a lot of work to get this point though. I’ve experienced two instances of autistic burnout since starting my PhD which both came coupled with a regression into severe depression. In both cases, my specialist mentor recommended I take a period of withdrawal from my PhD for two months, which enabled me to recover. Part of me feels embarrassed that I’ve had to take these withdrawal periods which have put me four months behind where I feel I ‘should’ be if I hadn’t taken that time to look after myself.

The reality is that I likely wouldn’t still be here writing this if I hadn’t had that time for recovery, so I’m thankful that I listened to my support network. 

A big part of the reason I got to this point with my depression during my PhD is my perceived pressure to be productive and the overwork culture that’s so prevalent in academia. When I started my PhD, I didn’t realise how pervasive these problems are. It was a wake-up call for me when Nature published their survey of over 6,000 graduate students, reporting that 36% of PhD students in the study had sought help for anxiety or depression related to their PhD studies. That’s over a third of PhD students struggling with their mental health. This article described many of the pressures I didn’t even realise I was taking on, which made me realise that I shouldn’t feel embarrassment or shame about having to take some withdrawal from my PhD programme. It didn’t mean I was weak or not cut out to be a scientist; it was just a product of the system being set up in a way which doesn’t support the mental wellbeing of those in academia. It’s the only logical conclusion I could come to looking at how widespread these problems and experiences are. The fact that I already struggled with my mental health prior to starting my PhD as well as being neurodivergent meant that it was inevitable that I would struggle in the current culture of academia. 

Since reading that article and other stories about mental health struggles in academia, I’ve had a bit of a mindset change. Rather than feeling constantly guilty that I’m not being ‘productive’ enough and that I don’t deserve to be doing a PhD (thanks to imposter syndrome), I recognise that I don’t have to give in to the overwork rhetoric we’re fed. I make sure I schedule in time to rest when I need to. I try not to work on the weekends if I can help it. I ask others to meet me half-way when navigating my communication differences. I allow myself to openly indulge in stimming when I need to regulate my sensory system. I’m open with my supervisor if I am having a period of intense anxiety or see signs of my depression making a comeback. 

I also make a point to discuss with colleagues the ways in which being autistic impacts me personally—the strengths and the challenges. I try to explain that while autism can be disabling for me at times (especially in a very neuronormative culture), there are also ways in which the way my brain is wired can be advantageous. Of course, because of the nature of autism and the fact that it is a spectrum condition it’s more productive to focus on my own personal relationship with what it means to me rather than stereotyping and generalising. For example, a challenge for me that is almost certainly linked to being autistic is sensory sensitivities. It means that sometimes I get very overwhelmed by an environment and have to leave suddenly to self-regulate in a more appropriate space. On the other hand, I believe that traits of mine such as honesty, precision, creativity, attention to detail, pattern recognition, and an ability to focus intensely on a topic of interest are a result of being autistic– or at least are exaggerated by the way I’m wired. It’s clear how these can be advantageous, particularly in science fields.

If there’s one thing I want people to take away from talking to me about autism, it’s a recognition that autism is incredibly diverse and one person’s experience can vary wildly from someone else’s.

Normalising having these conversations has helped me process my diagnosis and stay mentally healthy as well as making me realise that most people are very understanding. On the whole, people want to do all they can to support me as well as expressing interest in learning how to support neurodivergent people they may work with in the future. To this I always try to say: ask the individual. We are all different and thus will need different accommodations!  

Looking to the Future

Although I’m personally now in a very supportive environment, we still have a long way to go with supporting neurodivergent people in academia. As more and more autistic people are starting to have access to higher education, it’s so important that we think about inclusive pedagogy and appropriate support for different neurotypes. We also need to look at ways to better support those already in academia who are neurodivergent, taking into consideration factors like minority stress and the specific mental health challenges that can come along with neurodivergent conditions. I’m sure there are many undiagnosed and undisclosed autistic people in academia who would benefit from more tailored support and a better understanding of autism in general. 

I’ve certainly found that since I’ve been open about my diagnosis and ‘taken my mask off’, I’ve been able to embrace my autistic traits in their (sometimes too intense) glory. I’ve given myself permission to truly be myself which means I have more energy for my work as I don’t expend it all camouflaging and supressing stimming behaviours.

The stigma that still surrounds autism as well as mental illnesses makes it so hard for us to feel comfortable opening up about these things. I hope that by encouraging more people to share their stories and experiences, we can change the culture in academia to a more open and supportive environment for everyone.

Since I found out I was autistic, my anxiety and depression have become much more manageable thanks to the knowledge that I’m not broken, I’m just different. And being different can be a great thing.