I’ve just been to an ACEVO webinar on “Unlocking neurodiversity: creating inclusive charity workplaces” and like all good leadership training it’s got my brain pumping about my own experiences, what we do well at Replacing Animal Research, and what there is still left to address. 

I don’t often talk about my personal experiences. I find it deeply uncomfortable and not often relevant, but we were challenged that demonstrating leadership in this area might mean sharing our own experiences to raise the profile of the importance of developing and supporting a neurodiverse team. I realised I care about this quite a lot, so here goes:

Me, Myself, and I

I have always considered myself an introvert, and I’ve always had a sense of being ‘odd’. Whether it was being told to smile and that I looked miserable when I was, in fact, perfectly happy, never really getting the joke or understanding the social rules others seemed to find easy, or enjoying swinging my hands in my blazer pockets at school, rolling down slopes or spinning until I was dizzy. I was a weird kid. My dad would get frustrated that I didn’t make eye contact, so I practiced. Then, my first boss told me I made people uncomfortable in one-to-ones by staring. Honestly, you can’t win. 

I don’t remember when I first considered that I might be autistic. It might have been when a counsellor told me I was “out of touch with my emotions”, or when I found myself in the kitchen at home with my fists clamped over my ears rocking because I couldn’t take the noise from the kids, dog, husband, extractor fan, neighbour’s lawn mower, buzzing fridge, etc, etc. I know I started reading books about women’s experiences and recognizing myself more and more. One that was a big “A-ha!” moment was Cynthia Kim’s brilliantly titled “Nerdy, shy and socially inappropriate”. I joined a Facebook community of adult autistics to learn more. Not only did I recognize myself in far more of the conversation than I had anticipated I also learned a lot about labelling, strengths-based approaches, and the fears and frustrations of members of the autistic community.

I highly recommend that anyone interested in neurodiversity find and listen to people with direct lived experience. 

In the end, I was referred by my GP for assessment, and after waiting for around a year, I went through the formal assessment process in 2021 at the age of 46. I was told that despite having extremely high autistic traits across a number of dimensions, which clearly caused me issues, I did not meet the diagnostic threshold. Ironically, my well-practiced eye contact over Zoom (my assessment was during lockdown) was a factor. Go figure. In the verbal feedback, I was told the multidisciplinary team felt that in the context of the Trust’s resources, I did not ‘need’ a diagnosis as I was in a relationship and holding down a responsible job.  

It took me a while to parse my emotional reaction to this, I’m not going to lie. I felt fraudulent, like a hypochondriac, that there was no reason I should be struggling in the way I was, I was angry and disappointed. I felt I’d finally understood something about me and then been told that I didn’t at all. I felt I couldn’t raise it and ask for any accommodations at work as I didn’t have the magic piece of paper. And of course, both all of that and none of it was true.  

Picking myself up and dusting myself down

In the end, I realized that I had learnt an awful lot about my needs, my working style, and my sources of both joy and distress at home and at work. I realized that wherever there is a threshold, there will be people who are very close to it, and whilst I am clear that within the autistic community the label ‘autistic’ is a binary condition – you either are autistic or you aren’t – (there is nothing that is more insulting and invalidating than to tell someone who struggles with their neurodivergence “well we’re all a little bit autistic, aren’t we?”), I am also clear that types of neurodivergence are infinite. Oh, and that anyone who thinks medical diagnoses are scientific and objective, and not politically, socially and economically influenced is selling something. But that’s another blog. 

First forays into creating a neuro-inclusive culture

I also realised that all the career moves I have made have in some way or another been influenced by trying to adjust my working life to play to my strengths and reduce sources of stress. And I am well aware of my privilege as an educated, middle-class, white person that I have had the opportunity to do that.

I, therefore, feel very strongly about ensuring that people can bring their whole and their best selves to work and I try to ensure we have a culture in which that is the case. We talk about working styles and communication styles a lot and try to accommodate each other (not always easy when you have someone who needs to pick up the phone and speak to people and someone who prefers all their information in writing in advance). We provide as much workplace flexibility as possible so people can take advantage of their most productive times. We provide interview questions in advance when recruiting and tell people they can take as much thinking time as they need. Indeed in meetings the team are used to my ‘thinking face’ (I tend to joke that my brain is buffering), and when meeting people over Teams that I have not met before I will sometimes explicitly say not to judge my reactions based on my face, or that I might look like I’m looking away but actually I’m thinking. 

But there’s always more to do

But I know we don’t always get it right. In particular, I am not good at always providing written information in advance for people who prefer it. I tend to work at pace with lots of different/competing priorities and sometimes that makes me scatty, for lack of a better word. I’m aware that this potentially has a disproportionately adverse effect on my neurodiverse colleagues. In a similar vein, I can jump around between issues and tasks in a way that maintains my energy but drives others to distraction (maybe I’m auDHD??).  

The webinar ended with us conducting a mini-audit of our neuro-inclusive practice at our organisations and pledging to work on an area in which we scored poorly. My challenge was to develop a neuro-inclusion policy and to write this blog. One down, one to go. 

How do you feel neurodivergence is handled in your organisation? Do you reflect on your working style, either alone or with your colleagues? What’s worked well for you? I’d love to know!