In Conversation with Neurodiversity Society

By Sarah O’MahonyI came across the Neurodiversity society’s Instagram page at the end of semester one and was immediately curious. The neurodivergent community includes autistic, dyslexic, dyspraxic people and people with ADHD, dyscalculia, dysgraphia and more. Their infographics set out a brief explanation of the ideas of the committee ‘to give neurodivergent people a platform to educate the general public’ and ‘to create a safe and inclusive environment for neurodivergent and neurotypical people to mix and make friends’. Their logo features the rainbow infinity sign which represents the fact that neurological differences are due to normal changes and variations in the way the population ‘process, learn, behave and think’. I sat down with Chairperson Clíodhna O’Reardon, Vice Chairperson and PRO Elliott Mulhall, and Welfare Officer Nora Veski to learn more. We talked diagnosis, navigating college and relationships, labelling, masking, gender constructs and the r- word.The Disability Support Service in UCC sees disability support officers assess the needs of students, offer accommodations and general support through the academic year. Clíodhna shares that they have had a lot of experience with the service and speaks of their advisor. ‘He’s excellent for keeping in contact with you and keeping up to date with your needs’. Clíodhna shares the same advisor as Elliott and they both tell me he keeps in contact even if your communication is lacking at times. They point out this is essential as it can be overwhelming to maintain the rapport all the time. Obviously the DSS doesn’t come without challenges with one psychologist for their offices and one psychologist for student health designated to 25, 000 students. Elliott explains that due to COVID a backlog of the service meeting students has been created, which saw them prioritise first years for a while. This meant ‘they wouldn’t see us unless it was an emergency, but they still fit us in’.Clíodhna and Elliott are both autistic which As I Am, Ireland’s National Autism Charity, gives a comprehensive explanation of.It is a neurological difference which affects how people experience the world around them and how they communicate with others. An autistic person will have a different understanding of the world, a different way of seeing the world and interact with their environment differently to someone who is not on the spectrum.It's important to note, however widely known it is, that autism presents itself in diverse ways in individuals and the levels of support people may need also varies incredibly.Nora shares that they were diagnosed with ADHD by UCC last year, when the service wasn’t as overwhelmed with the post COVID influx of people. Throughout our discussion it became clear to me that COVID, although presenting issues of alienation and isolation to the community, also served as an opportunity for individuals to sit with themselves and possibly begin the process of diagnosis. ADHD Ireland offer this descriptionAttention Deficit Hyperactivity Disorder is a neurobiological condition in which the brain’s neurotransmitter chemicals; noradrenaline and dopamine do not work properly. It affects learning and behaviour right through the school years and in many cases beyond into adulthood.In terms of a diagnosis, as ever with anything health related in Ireland you are facing the godforsaken divide between public and private care. Clíodhna tells me that they were diagnosed privately with autism which cost 600 euro. However, this is on the cheap side and many people can find themselves handing over the likes of 1, 500 euro. They joke that some need to ‘take out a mortgage on their autism’. Clíodhna also shares that there is no public autism diagnostic route for adults and the public ADHD service for adults only opened in January 2021. It’s unsurprising that it already has a waiting list of ‘two or three years’. Elliott emphasises to me that having a diagnosis is a privilege and that self- diagnosis is completely valid. People who have yet to get a diagnosis are one of the main groups the society is trying to reach; in my view Clíodhna, Elliott and Nora are role models for anyone approaching the mountain of diagnosis or who just need support within the community.However, it’s not all roses once you get a diagnosis. Nora explains that once they got their ADHD diagnosis, applying to the DSS proved too challenging. The diagnosis process is already extremely difficult for individuals with ADHD as it necessitates that you are present for ‘consultations, complete paperwork, get everything done for a certain deadline’ without streamlined support. Although the committee members speak highly of the DSS, Nora has found it difficult to register as the process is inaccessible for them. They mention issues such as the complicated process of providing the DSS with the psychiatrist’s report and feeling overwhelmed with again ‘being present for meetings and keeping up with deadlines without centralised guidance. Something that creates these difficulties is executive dysfunction and demand avoidance. Clíodhna explains that ‘executive dysfunction is basically a breakdown in your ability to complete the tasks of daily living’ and that we all have a certain amount of demand avoidance however it can become ‘pathological’ and affect our day to day.Post diagnosis is another dramatic experience. Nora describes it as a ‘revelation’ where everything finally begins to make sense, particularly how you view yourself. It is inaccurate and unfair to suggest that young people are just searching for labels because it is trendy. The committee members certainly weren’t looking for a diagnosis to flaunt in social settings but instead an acknowledgment of how they experience life and a better understanding of their own needs. However, Elliott explains that ‘it’s okay to be scared’. Society has a lot to say about people who are neurodivergent and some of it isn’t that positive. Following diagnosis, they felt they were ‘putting on’ the autism as part of the imposter syndrome they felt. However, Elliott points out that everyone can get there in terms of ‘accepting yourself’. Clíodhna shares that they obsessed over learning everything they could about autism following their diagnosis. They advise people to not read their report all in one sitting and instead to take it in your own time and ‘surround yourself with community’ because post diagnosis you are on a bit of a rollercoaster.A massive issue that creates trauma in neurodivergent people is masking. Masking involves intentionally learning neurotypical behaviours and mimicking them in social situations. This is particularly relevant for women and individuals assigned female at birth (AFAB). It is important to use the AFAB term as not everyone who is labelled a girl at birth identifies as a girl i.e., they may identify as a boy or they may be gender non- conforming. Noting the difference between sex and gender is particularly relevant in this situation as a large amount of neurodivergent and autistic people in particular are members of the LGBTQ community. Women and AFAB individuals are less likely to be diagnosed with a neurodivergence as historically more research has focused on the diagnosis of men and individuals assigned male at birth (AMAB). They are more likely to mask their symptoms and be misdiagnosed, which can result in mental health problems. Nora tells me that in terms of her experience pre ADHD diagnosis, gender constructs ensured that they began masking their symptoms from an early age in school. Girls are expected to sit down, sit still and be quiet more so than young boys. They explain that during diagnosis psychiatrists and psychologists have three groups to categorise you into: inattentive, hyperactive impulsive and a mix. The behaviour asked from girls in school ensures that they present as more inattentive as they mask their symptoms. Girls learn to mask their physical hyperactivity in any environment because they’re scrutinised and shamed for not conforming to the gender stereotypes of being a girl.  Clíodhna tells me that ‘instead of teaching a neurodivergent person how to be socially appropriate, you [must] teach society how to receive their style of communication’. In explaining masking to me they pull up a post by Vivian Tisi a speech therapist who posts content about autism and neurodiversity. It says that ‘if your speech therapy goals promote masking, you are directly causing mental health distress in Autistic people, including the promotion of suicidality’. Conformity can sometimes be the route to the top of the social ladder; however, this practice can be detrimental to those who are neurodivergent.  Nora explains that the unmasking process is ‘freeing’ but at the same time you ‘uncover all the trauma’ that comes from realising how much of yourself ‘you had buried’. Elliott points out that it can take a long time for some as you are ‘discovering who you are and [learning] to be okay with showing that’. It’s clear that masking is a result of ableism, which is discrimination and prejudice against disabled people. It is more evidence that we need to value the presence of the neurodivergent person, not shoehorn them into certain social settings or acceptable behaviours. They offer certain strengths and abilities that neurotypical people don’t have due to their ability to think differently. ‘Allow yourself to be upset by the things that upset you. Allow yourself to stim and move in the way you need to regulate yourself’. Stimming is the behaviour of repeated action or movement that can be accompanied with vocal sounds. It is a personalised response to a sensory overload and can come in the form of pacing, moving objects, jumping, hand- flapping and more. As Clíodhna states it is about self-regulation and it is not something to be afraid of or to stare at, however difficult you may find it to stop rubbernecking.The main motivation for founding the society is to create a safe and accepting place for neurodivergent people to mix. They are the social repping group of societies rather than the political and activism repping group for this very reason. At the moment they hold ‘Neurodiversitea’ mixer events on campus where you bring your own mug ang get to chatting. They aim to start organising events off campus too. Clíodhna emphasises that this is important as not everyone has someone to go bowling or go to the pub with or maybe they do but their friends just don’t get it and they feel uncomfortable when they go out with them.Again, society has a lot to say. Sometimes you will hear the r- word or other pieces of harmful language slipping into casual conversation, even in conversation with someone you know. Elliott is well able to throw a comeback at queer slurs but not ones about being autistic. It hits harder, with Clíodhna describing the physical reaction they get when someone does it. Elliott suggests that it is because there is still a lot of destigmatising of the neurodivergent community left to do.  The society is primarily a space for neurodivergent people but they also welcome neurotypicals and this features in their constitution. An example of this is the future they aim to do events around relationships, sexuality and consent in the context of neurodiversity. This would be a great opportunity for a neurotypical person to understand their partner better. The committee members tell me that they are ‘excluded enough from society, we don’t want to be the one’s excluding’.Growing up my brother Colm who has autism taught me a lot about the perspective of the neurodivergent community. However, interviewing Clíodhna, Elliott and Nora proved to me that there is always more to learn and accept.