Date: 09/06/2023
Author: Joanna Grace
Bio:
Jo is a second year doctoral researcher in the Centre for Research in Inclusion, School of Education at the University of Southampton. She is a sensory engagement and inclusion specialist, globally published author, trainer, TEDx speaker and founder of The Sensory Projects. With a background in special education, her PhD research focuses on the identity and belonging of young people with profound intellectual and multiple disabilities.
I am an autistic researcher studying for a PhD in identity and belonging with people with profound intellectual and multiple disabilities at the University of Southampton. This makes me one of the very few autistic people in full-time employment. Various studies situated in the UK cite figures of between 16% and 22% of autistic people being in employment, with full-time employment rarer still. I have, at times, been described as “not very autistic” or “not that sort of autistic” so perhaps it is no surprise to find that I am the autistic person fulfilling this minority role of “employed autistic”. However, this is the first time in close to two decades that I have been able to fulfil the requirements of a full-time position.
There are many reasons why autistic people struggle in workplace environments, among them are communication, social and sensory differences. Despite not being “very autistic”, I have in the past had to quit jobs because the sensory environments they required me to exist within created so much pressure on my physical wellbeing that they resulted in me falling ill. I have been bullied out of jobs when my communication and social differences were not understood. “Not very” autistic is not a thing: All that those commenting as such are reporting on is my ability to mask the mismatch between the neurotype I have and the neurotype the world assumes I have. This has improved with age. I now consider myself good at looking “not very” autistic, but of course, I remain 100% autistic and so it was with some trepidation that I took up my post as a doctoral researcher.
I am grateful to my supervisors for their willingness to adapt their advice to better fit the way my brain works and their openness to learning about my different experiences of the world. I am also grateful to the South Coast DTP EDI (Equality Diversity and Inclusion) forum for providing me with a space to voice some of the difficulties I have had with regard to clashes between how I work and the protocols within the university. I am two years into my studies and I am still here, which to my mind is testimony enough to the willingness of the University and SCDTP to be neuro-inclusive.
Earlier this year I received an invitation to attend the Cumberland Lodge residential yearly event, which holds pride of place in the SCDTP provision for its students. I automatically turned it down, as I had done when I received the invite in the first year. I knew it would be for neurotypical students not for me. My supervisors pushed back pointing out how valuable the content at the residential would be and how useful it would be for me to get the chance to articulate my research to people who might ask me questions about my ontology and epistemology. Trying to seem “not very” autistic includes not mentioning when I experience barriers created by a neuro-divide. I do not like to mention these things. I do not like to make a fuss. But when I was asked why I had turned the invite down so swiftly, without even apparently stopping to consider it, I did mention that my decision had been based on my neurotype. My lead supervisor Mel Nind told me that several autistic researchers had attended the event last year and had brought aspects of its inaccessibility to autistic people to light: they had experienced back-to-back scheduling of events, talks, and discussions, with no processing time to digest what had been said; they had found the food challenging, especially to those who had particular sensory differences that mean they need to eat certain things in a certain way; and they had found being expected to share rooms gruelling. Mel assured me that the SCDTP had listened and that this year things would be different. I was allocated a room on my own. I accessed a timetable that had sufficient breaks to enable me to take in what had been said and to refocus. I was given space and opportunities to connect with like-minded people.
On the first evening we were taken for a walk (an ideal opportunity to chat to people without the expectation of eye contact). I made it my mission on that walk to track down the autistic people who had attended the event last year. I have an idea that I can spot autistic people, neurokin recognise neurokin! I soon found them. I made a point of thanking them for their advocacy. Because they raised their voices last year, and because their voices were heard and acted upon, I was able to attend this year. I am often proud of being able to seem “not very” autistic. I do not highlight the barriers I face because I do not want to make a fuss. Instead, I get ill, I leave the job, I do not go, I am not seen. And my voice, along with the voices of a great many other autistic people, is silenced. My pride in being able to pass as not autistic does not create change. If anything it helps to further reinforce the barriers I face. Monika Botha (2021) powerfully highlights how inhospitable and dehumanising academia can be for autistic people, whilst at the same time Grant and Kara (2021) highlight how many aspects of being autistic could be considered an advantage within qualitative research. This is a gulf that needs bridging. The world changes when we listen to voices that were not previously heard. By speaking out last year my neurokin bridged the gap a little between the neurotype the world assumes I have and the one I actually have. That bridge gave me access. It was not perfect, I still experienced some pretty significant barriers in getting to the event in the form of a lack of forward information about what to expect. Autistic people often have a different relationship to time to non-autistic people which means that knowing what we are doing now and what we are doing next is particularly pressing in our minds. I considered not mentioning these. I am so grateful to for the changes that were made it felt churlish to make a request for further adjustments. But my experience with the SCDTP has been that they want to know, they will change with me, but can only achieve it if they know what to change. I raised the issue and was immediately understood.
On my last day at the event, another female attendee approached me as I queued for lunch (queues are another great place to have conversations that don’t require eye contact!). She told me that she had listened to my presentation on the Autistic Advantage in Research that I gave as part of the SCDTP training programme ‘What is…?’ sessions and thought that she was autistic and the articulation of my experience had served to make things easier for her. At that moment I recognised myself as a part of this chain of change. Those brave enough to advocate for their own needs last year created change I benefited from this year. As qualitative researchers, we know the value of articulating experience and we work to create changes like these for multiple populations.
References
Botha, M. (2021). Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.727542
Grace, J. (2021). The Subtle Spectrum. Routledge.
Grant, A., & Kara, H. (2021). Considering the Autistic advantage in qualitative research: the strengths of Autistic researchers. Contemporary Social Science, 16(5), 589–603. https://doi.org/10.1080/21582041.2021.1998589
