*Within this article, I describe myself as autistic. It is important to highlight that some people may prefer to use identity-first language (for example, “I am autistic”), and others will prefer to refer to themselves with person-first language (for example, “I am a person with Autism”).
Theresa Anyanwu, EDI & Research Culture Co-ordinator
The first time I had an in-depth discussion about Autism was during a developmental psychology class in Sixth Form. My enthusiastic and incredibly kind psychology teacher introduced us to a ‘spectrum’, alongside the concept of diagnosis and manuals filled with various psychological condition criteria.
I was intrigued by the concept of neurodivergence and the different strengths and challenges that people may face in their everyday lives. Leaving the classroom, I was armed with the very first building blocks towards dismantling my own misconceptions around neurodivergence – yet the fleeting thought of ‘could I possibly be…’ terrified me to the core.
Like many others diagnosed later in life, the same few thoughts kept swirling around my head, a bubbling brew of doubt, imposter syndrome, and anxiety:
“It can’t be, I know x who is Autistic, and they are nothing like me!”
“Surely if I was Autistic, I would meet every single criterion on Google…”
“If I was Autistic, wouldn’t I have been diagnosed at school?”
So, I stirred the ingredients with a ladle of confirmation bias, topping my concoction with a lid of suppression, destined to walk away from any thoughts around neurodivergence and my overall mental wellbeing. However, there is only so long until a pressurised mixture, lit by the flame of everyday life, boils over…
In early part of 2023, I laid with my head on my carpeted floor, staring at the phone number of my then GP practice, procrastinating the final steps of admission that I needed support. Life had been laced with ever-present feelings of burnout and anxiety, doing everything in my power to make sure that everyone was happy, and that above all, I appeared normal. But the moment had arrived where I could no longer ignore the ever-plaguing emotions, questions, and unpleasant experiences, I needed to talk to a professional.
Reluctantly, I dialled the number and asked for help. Greeting me in my first appointment was a breath of fresh air, a hand within the void, and a voice that said “I promise that you aren’t alone, we are here to support you”.
Following my formal diagnosis with Autism approximately a year later (this was pure luck, waiting for a diagnosis can be a multiple year process), I can now look upon my brew with a new perspective, wiping away the bubbling mess with a cloth of new-found understanding – shaped by the supportive people around me, the guidance of professionals, and wise words of fellow neurodivergent communities:
“Surely if I was Autistic, I would meet every single criterion on Google…”
- Autism is a spectrum condition - Autism is referred to as a spectrum condition, meaning that the same broader condition can affect people in different ways. Experiences with autism can often differ from person to person, with some common experiences overarching the condition. I, personally, experience difficulties with maintaining eye contact, timing when I should speak in conversations/trying not to interrupt people and preparing conversations in advance, social interaction, cues, and anxiety, the process of using public transport, and the sensory overload from far away smells, fixating on certain interests, and the texture of certain objects. However, this is and will never be an exhaustive list. We can all have different experiences with Autism – each one is valid.
““If I was Autistic, wouldn’t I have been diagnosed at school?”
- Diagnostic criteria only form part of the picture - Whilst diagnostic criteria can be used in the process of assessment, this only forms part of the picture. Several other pieces of information are taken into account during a diagnosis, such as family history, relationships with those around you, schooling, present life, past experiences, work history, and other information.
- Information on the internet is a double-edged sword - It is important to acknowledge that, whilst the internet can be a helpful tool for gaining advice, community, and support – many different articles can formulate and publish different criteria. It is always important to screen these sources of information for their reliability and if you aren’t sure, contact your GP.
- Not everyone who identifies as Autistic is going to receive, nor want, a formal diagnosis - Reasons for this can include potential fear of judgement or lack of support within their personal and/or professional lives, receiving misinformation about Autism, worries around labelling, stereotyping and stigmatising, concerns over the effects on their future, feeling that a diagnosis is not important, and not wishing to undertake/a lack of faith in the diagnostic process.
““If I was Autistic, wouldn’t I have been diagnosed at school?”
- Neurodivergence is not only picked up in childhood - Autism can often be presented as a spectrum that can clearly be established during childhood. However, there are several reasons as to why a diagnosis might be missed during this developmental period of time, or even a misdiagnosis occurring. For example, certain medical professionals may want to wait for further development before diagnosing, parents or guardians may not want to diagnose their children due to a potential lack of support from the systems around them, judgement from others, subtle presentations in their children, pre-determined beliefs around neurodivergence, or a lack of understanding about things to look out for. Other microsystems around a child, such as their school and teachers, may not have the capability or knowledge to look for potential signs of neurodivergence within the children they support and may need to rely on previous medical records. Furthermore, conditions within neurodivergence can co-occur or have similar traits of others, such as Autism and Attention deficit hyperactivity disorder (ADHD).
- Experiences with Autism are not fixed - Experiences with Autism can also change as you grow and develop, with some traits being more or less prevalent with different factors, such as age and environment.
- Disparities exist within an Autism diagnosis - Gender disparities can also influence the likelihood of diagnosis, particularly impacting women and girls, along with those of a particular socioeconomic standing.
I cannot pretend that the road following diagnosis is a simple one. It can sometimes be tempting to think that once you are diagnosed, or once you are fairly sure that you are Autistic, a book floats down to provide you with all of the long-awaited answers. I can tell you with much certainty that I have not found this book, nor do I believe that only one book (or written piece in this case) could capture the complexity of the spectrum and the experiences that come with being on this. However, like the wisdom of my Sixth Form Psychology Teacher, I hope this piece can encourage the building blocks of continuous learning, addressing pre-determined biases or misconceptions, and considering one’s own personal support needs.
Resources for Further Information About Autism and Support Available:
National Autistic Society – The UK’s leading charity for autistic people and their families, established in 1962.
National Autistic Society - What is Autism? – a video by the National Autistic Society, providing an introduction into what Autism is, narrated by Alan Gardner, the Autistic Gardener.
Actually Autistic Me – an inspiring article by MPLS Equality, Diversity and Inclusion Facilitator, Hannah Ravenswood, for World Autism Day 2022.
Spoon theory: How a cutlery metaphor can help explain the energy it takes to live with disabilities - This video details Christine Miserandino's spoon theory, illustrating the effort it requires to navigate the world with a disability.
University of Oxford Equality and Diversity Unit – Autism – Find out more about some of the difficulties facing autistic people in the workplace and potential adjustments.
NHS – Autism – an NHS-provided guide if you or someone you care about is autistic or might be autistic.
NHS Easy read information and videos about autism – a collection of easy read materials from the NHS around Autism, the process of diagnosis, and other related information.
University of Oxford Disability and Neurodivergence Networks and Support – a collection of networks and support for disability within the university from MPLS.
University of Oxford Occupational Health Service - The University of Oxford Occupational Health delivers services that support the University’s policies by seeking to prevent ill-health and the promotion of health and wellbeing in the workplace.
Autistic and Black: our experiences of growth, progress and empowerment by Kala Allen Omeiza