Neurodiversity Celebration Week
This week is Neurodiversity Celebration Week, some may feel weeks like this contribute to tokenism and create a novelty around supporting neurodiversity and those are fair considerations. Many people may ask why it's necessary that we have a whole week dedicated to neurodiversity and sharing stories from the neurodivergent community. There could be a few reasons for that, here’s a few that come to my mind quickly but there are more out there I’m sure… maybe you’ve grown up in a family who are neurodiversity affirming, have always known that you’re neurodivergent and you’ve felt unconditionally supported and accepted, maybe you’re neurotypical but see being neurodiversity affirming as something you would naturally do or maybe (but hopefully not) you think all this neurodiversity stuff is nonsense so a Neurodiversity Celebration Week is pointless.
When I’m not working on your lovely orders, prepping for markets or designing new sustainable products, I work for a charity 3 days a week supporting families of neurodivergent gifted and 2e children. I recently trained as a neurodiversity-affirming AutPlay therapist and am always educating myself so I can better support children and families in my day job but also be a better advocate for my own family.
This blog post is a bit different from others I’ve posted. I hope you read it and understand why I believe that weeks like Neurodiversity Celebration Week are important for the world we live in but also the difference it can make to an individual or their family to hear about the personal experiences of others.
Why did I seek a diagnosis?
If you’ve followed me for a while, you may know that around 3.5 years ago I received a diagnosis of ADHD. Like so many who receive a late diagnosis, I came to this through parenting. I saw there were things my kids learned with very little effort whilst there were other things that they struggled to understand without my support. I saw the impact that mismatch was starting to have on their self-esteem and mental health and there were aspects of their profile that weren’t always easy to get others to acknowledge or understand. I remembered how I felt as a child, experiencing the things and emotions my kids were feeling and thought about what might have helped me as a child.
When I first went to the GP after months of research, I went because I believed that it would help my children if they knew they weren't alone and thought it would make it easier for my children to get the support they needed, that people would listen more because you know… genetics! I was equipped with a long list of things I found difficult historically and in my daily life, systems I had created to try to remember everything, coping strategies I had used (lots of them were not positive unfortunately), medication I’d been put on at various points for depression or anxiety, periods of time I’d been in counselling since I was 16 years old. Initially, I was met with opinions that adults, particularly women, couldn’t be ADHD and questions about why I would want to pursue an assessment because I had achieved fairly highly at school and university, had a family and “seemed alright”. They eventually agreed to make the referral and after a few months of waiting, I had my assessment.
I know now that the extensive support for my mental health previously and those unhealthy coping strategies I had used in the past had pushed me up the list as a more “high-risk” case. If things had been a bit smoother in my teens and twenties, I would have been on that waiting list for a couple of years.
Receiving my diagnosis
When I got the call in October 2021 that I “met the criteria for a diagnosis of ADHD” a wave of relief washed over me, this hadn’t all been in my head and I finally had an answer to why things felt harder. This relief was followed by intense grief and burnout, which I know is very common for people post-diagnosis, particularly those who are late diagnosed. I wasn’t able to do many of the things I had felt were straightforward until that point. I was doing the bare minimum day-to-day to keep my family and work ticking along. I looked back over events in my life and wondered how they might have been different if I had known, if someone had recognised what I was experiencing and tried to support me, if I could have avoided some of the pain, isolation and sadness I had felt growing up.
After struggling for most of my life with my mental health; feeling like I wasn’t good enough, believing that I had to push myself to exhaustion to achieve what others seemed to do so easily, that I was only worth what others believed about me, that ultimately something was wrong with me and I had to do everything in my power to make sure all the things I struggled were hidden so people didn’t think less of me or worse leave me because I wasn’t useful, funny or loveable… I found it hard to believe that none of that was rooted in truth.
I should add that a lot of these thoughts and feelings weren’t solely because I grew up not knowing or understanding my own specific neurotype. There were people and events in my childhood who contributed to shaping those internal beliefs. I have worked very hard in (a lot of) therapy to process those things and put boundaries in place with people who perpetuate those negative narratives to protect my mental health going forward. That being said, by the age of 12, an ADHD child will have received around 20,000 more negative comments than a neurotypical child of the same age. These might be small comments from teachers, friends or family members; “stop talking”, “why can’t you sit still today”, “if you can’t calm down you’ll have to leave the table”, “you just need to try harder”, “you can do this, you’re just being lazy” “you’re so loud”, “you never stop do you?”. Whilst these comments may seem fairly innocent, the sheer amount of corrections and questions around behaviour, often leads to low self-esteem and a self-belief that we are ‘bad’, overtime and as social awareness increases this can morph into hypervigilance and self-monitoring to a level that causes burnout.
Is it a superpower?
I personally don’t subscribe to the “ADHD is my superpower” narrative (I don’t have an issue if that’s how someone else chooses to define or contextualise their own neurodivergence). For me, if I choose to use the superpower narrative, it undermines the areas I struggle in and the barriers I encounter in society; it also (again in my opinion) minimises the efforts I make daily to work with my brain. Also let’s face it, many superheroes have to hide their superpowers, never truly being their whole selves and live life in isolation to protect those they love… after a life of not really knowing who I was, why would I go back to keeping parts of myself in the shadows?
I have worked hard to accept all parts of my brain; the high cognitive abilities and parts of my ADHD that mean I learn and absorb things quickly, can see patterns and solutions where others may not, I am able to condense a lot of activity into a very small window of time and my brain works well under pressure, I am passionate and empathetic because I feel things deeply; but, I also take things personally a lot and often feel overwhelmed or down without understanding why, I am almost incapable of creating a new habit even if it’s one that will benefit me, I often forget to take medication or brush my teeth and I lose things frequently. I get bored very quickly which leads to me starting projects I don’t always have the time to finish which contributes to me being quite messy.
Is it a superpower? For me no but, it’s also not something I would ever remove. It’s not something I’m ashamed to have as part of my neurology, without being ADHD or 2e, I wouldn’t be me and I wouldn’t be able to understand and support the tornadoes whirling around in my own children’s minds. I wouldn’t be able to model how I regulate my nervous system in an attempt to give them tools to do the same, I wouldn’t be able to normalise needing an array of fidgets to help my concentration or just needing to get up and move around with no reason other than if I don’t I might feel like I might spontaneously combust.
My ADHD diagnosis at 33 didn’t change who I was or who I am, it didn’t mean all of a sudden I was better or worse at things. For me, my diagnosis, the learning, realisations and hard work since my diagnosis has given me awareness and acceptance. It’s provided me with a new context to view some of the challenges I’ve experienced throughout my life. It’s given me a kinder and more patient lens to view myself and my family through. Learning how my brain is wired has given me the perspective and language to be able to identify, accept and communicate the areas where I may need support without beating myself up or trying to overcompensate to hide that I need help. It’s made me more self-confident because I know myself and my worth now; because of the awareness and acceptance I’m able to love myself more and not be defined by how useful I am to others.
It’s been a long journey for me to be at the stage I’m at now where I understand how my brain is wired and accept myself without judgement (most days!). It’s also a journey that could have been much smoother if there had been more awareness, knowledge and acceptance of neurodivergence in my life until that point.
Why is talking about neurodivergence so important?
A research study showed that ADHD adolescents are more likely to attempt suicide and injure or harm themselve than non-ADHD adolescents. Without effective support and understanding, ADHD children are more likely to experience challenges due to anxiety and depression, later in life they are at an increased risk of difficulties with substance abuse, addiction. Many ADHDers may face academic challenges or experience barriers in the workplace which can lead to long-term financial hardship and difficulties forming meaningful relationships.
A lot of the language around neurodivergence used in society is deficit focused and talks about the experience of neurodivergent individuals from the perspective of others and how it impacts them rather than the neurodivergent individual themselves. The language and perspective within the wider society of neurodivergence is heavily based in the medical model (and a lot of outdated medical research) rather than the social model and has been developed often without input from the neurodivergent community. This has led to many misconceptions in our society around what neurodivergent individuals ‘need’ and what our barriers and capabilities are, and in some cultures it has contributed to ableism through direct and indirect discrimination.
Thanks to the advocacy from groups such as ASAN and their “Nothing about us, without us!” campaign, the neurodiversity movement and many individuals sharing their personal experiences; people are starting to realise that a lot of our societal expectations and perceived cultural norms create unnecessary boundaries for neurodivergent individuals; it’s becoming more accepted that adjustments should be made within our society to accommodate all neurotypes and without assuming what neurodivergent people are or are not capable of.
I can only speak about my own individual experience, whilst there may be similarities between how I navigate my life as a 2e ADHDer and someone else of the same neuro minority, we will not have the same experiences, opinions and barriers. The more neurodivergent people who feel able to share their stories and experiences, the more we can recognise the nuance within this community and work towards being neuro-inclusive in wider society.
Everyone is neurodiverse, ‘Neurodiversity’ refers to a natural diversity in human brains, being neurodivergent refers to being viewed as having a brain that functions in ways that diverge from the societal constructs of ‘typical’. Depending on your culture those constructs may vary greatly. Without open and affirming discussions; within families, friendship groups, schools, workplaces and society in general, that celebrate the unique strengths that neurodivergent individuals contribute to our society, we put neurodivergent individuals at risk and increase the likelihood of feeling ‘less than’ purely because we don’t fit a set of expectations that was decided without our input. These conversations mean that neurodivergent individuals can grow up feeling accepted, capable, valued and empowered rather than broken, that’s why these conversations are important.