I was 23 when I was first spotted and put on the pathway for diagnosis for a neurodivergent condition. I was fortunate enough that a lecturer in my first year at university spotted a few things about me and set up a conversation with the Learning Support Office. That was almost 20 years ago.
Before I was diagnosed, I was awkward; socially and physically. I had been told I was a child prodigy at 4 and by the time I started my GCSEs I was not excelling to the same level as I previously had. I had few friends and had taken two changes of direction in my career already. I felt lost and very isolated with no one seeming to understanding me. I had been treated for anxiety and depression by the time I was 21 and was already no stranger to counselling and therapy.
Even after diagnosis, it still affects me every day. There are ways that it affects me that I will probably only ever share with few other people. There are other ways that I am forced to share from time to time due to not meeting neurotypical social standards. I have to be aware of what I am doing as far ahead as possible to ensure I am able to be a good colleague, partner and dad.
Awareness is important to me because for so long I have felt alone. For almost anyone, diagnosis doesn’t come until after a traumatic event. Either at school or in life.
Any support or assistance is hard to find and often even harder to use or get access to. I have one child on the pathway for Neurodiversity testing and I have another that is showing signs. For them, and for other children and adults, I want them to know that they aren’t alone. It’s also important to me to have Neurotypical people understand how living in their world can be so tough for us.
Diagnosis
When I was initially diagnosed, getting Occupational Therapist support in a rural area was pot luck. My GP hadn’t heard of dyspraxia and didn’t feel it was their place to do anything, so continually pushing with the university Learning Support Offices help was the only way through. You can be made to feel like a fraud and that it’s not real, that everyone suffers with these things. The feelings when you finally get your report are mixed. On one hand, you’re relieved, on the other you feel ashamed, broken and let down by so many people (family, education system etc). I have constantly been told “please let us know how we can help”, but you don’t know what help you need and you hear echoes of “but everyone struggles with that”. You’ve just struggled your whole life and have found ways to manage. Not always healthy ways, but you’ve “managed”. However, you don’t know the impact that those ways of coping have had or will have on you. I was given no awareness, education or support.
Learning
My lecturers at the time were very supportive and would enable me as best as they could, but by that time I already felt like a burden and had to struggle to come to terms with who I was at the same time. I had to review my life and every event only to wonder if they occurred due to my Neurodiversity. I wasn’t good at sport. I had terrible posture. My handwriting had always been awful. Going into the workplace after graduating was difficult. I didn’t know what support was available, I didn’t know what it meant for my future and I had to find a way. I seemed to be able to push my way through the career ladder and had become self-employed, contracting in project management. At this stage, I received the worst advice I have had to date which was never to disclose to an employer as I would be treated differently, and opportunities wouldn’t come my way as I would be seen as inferior. So I never did. I was told that as a contractor, I was not their responsibility so they wouldn’t care and they would cast me out at the earliest opportunity. So I continued to struggle alone.
Looking back, I now realise that this led to a series of what are known as “meltdowns”. Beginning any new role for anyone can be tough and you’re constantly trying to understand the landscape in a business, the work you’re required to do, the people and the management structure. As a contractor I was doing that alone. With no one around me to know how I was different. I was changing roles maybe twice a year and had to go through this ramp up process surrounded by new people every time. I was unaware that I would need to be kind to myself and rest to process the new information, so I would just work harder as I assumed that’s all it would take. Because I didn’t take those breaks, I would have meltdowns. These are emotional outbursts where your pressure release valve goes off. They can be just crying, they can lead to physical or verbal outbursts. I don’t excuse my behaviour during these times, but I now understand them much better.
Almost everything I have learned about myself; I have either stumbled across or been given as a result of a chance encounter. There really is very little support currently in the NHS, my GP knows only what I explain to them. My eldest son’s school has an incredible SENCO department who keep finding different organisations for us to tap into, which is also helping me understand myself better as well. All the help or support seems to be behind a series of “fairy doors”; you only know to look for them if you know where they are to begin with. If you don’t, you may never find any support.
Professionally, it can be a struggle. Having to explain to people almost every day that you don’t understand something because they have talked too slowly or too fast, that you need to see it, not just be told it.
As a species, we are terrible at communication and saying what we mean. I have been in work environments where expectations aren’t apparent or clear and yet you are supposed to just “follow the rules with everyone else”, but if you can’t see those rules and aren’t told those rules then it can become difficult. Imagine starting a boardgame for seven people where everyone knows the rules before you sit down. Everyone says “oh its simple, don’t worry you’ll get it quickly” but after six, seven or even 20 turns in you still don’t entirely get the rules you’re supposed to be playing by. You end up just playing it safe and trying to do what you can to not “lose” the game.
Life with
I have had many coping mechanisms, some I had before my diagnosis and some since that are much healthier. Before my diagnosis, I drank heavily to be more social and fit into a crowd. Now, I realise that was a terrible strategy and so may only have a drink if I want one. I understand now that it may have helped make me appear more sociable and numb me to too much sensory stimulus (Sensory Processing Disorder is a common element for most people with a neurodivergent diagnosis) but it wasn’t healthy.
I’m a father now and engaged, but all of this has come late to me as there is no support to help you navigate the world of friendships and relationships. I have had failed relationships and I have few friends; my circle is small but those in it are significant to me. Many people find it difficult to understand.
Trying to understand how to coexist with someone isn’t easy. My fiancé has been amazing in learning about Neurodiversity and she takes the time to ask or google some good resources for her to better understand. She has bought and read books, she asks some challenging questions and has had to change the way she interacts with me to make things work. And I have had to learn as well that sometimes the literal answer isn’t one that people want. Thankfully she is someone who is able to see past the shame and stigma, and we find the funny moments in what we go through.
She’s had to accommodate how we prepare for events. She lives in a house where all three of us boys have a strange relationship with time, how we don’t like last minute changes and how she’s often squeezed between the needs to be herself and the need to make sure we are all ok. She puts a lot of pressure on herself to make things work and ensure that the three men in her life are ok and because of that we take every chance we can to spoil her because I know it is a massive sacrifice.
In work, I never disclosed to anyone prior to starting work at Techmodal. I think it has been a journey for all of us who I have talked to about it.
To decompress outside of work, I find being creative helps. Despite my awful coordination which comes with my flavours of Neurodivergence, I used to paint small figurines from Games Workshop. I have an abundance of painted and unpainted miniatures in the garage now though as my hobby room had to be made in to a nursery for Alex, our youngest.
To coincide with his arrival, I began playing dungeons and dragons. We then had Covid, and just like work, my hobby became online. I’ve had a campaign running for almost three years now with the same people, I’m able to write a storyline, create interesting other characters for them to interact with inside a world and an adventure for them to explore and discover. We recently had some “dream visions” that I think two of the party will never forget.
Importance of Awareness
As I said before, awareness is beyond important. Estimates have one in seven people being neurodiverse and the struggles that I feel aren’t isolated to just me. Some struggle without ever knowing why as diagnosis is a privileged position to be in, again its one that is most common in white men. For women or people of colour, they are less likely to be diagnosed as neurodiverse, but could be getting mental health treatment their whole lives due to neurodivergence being overlooked.
The world has become a little better over the 20 years since my diagnosis and that is something that we aim to highlight in the weeks presentations internally. Sensory clean hours in shops can be great, but they’re always at a time when most people who would benefit from them will be at school or work.
I want everyone to be able to live to their potential. Technology has done so much to help me. That little black box I carry in my pocket has alarms, shared notes, apps for support and guidance. All of those things should be available to everyone to help them, whether they’re neurodivergent or not, but if we don’t know they exist we cannot make use of them and benefit. The same can be said for neurodivergent people; I know they have so much to offer but because it can often not seem “mainstream” thinking then it is easy to overlook, yet on the other hand so many corporations want “out of the box” thinking.
For those who may not be aware of their neurodivergence, this week may start a conversation that may help them unlock it. But they’ll need help from the neurotypicals as well, because without them being better informed then we cannot integrate Neurotypical and Neurodivergent people.
AUTHOR
Rich Finegan
Consultant