D, E & I: VIEWS FROM LEADERSHIP SERIES - Charlotte Valeur, Founder of Institute Of Neurodiversity, ION

Coulter Partners: Please describe your personal journey and motivations for being an advocate of Neurodiversity awareness.

Charlotte Valeur: We have a lot of neurodivergence within my family which means I’ve always been accustomed to having people around me that are different. I was diagnosed very late, when I was 52. A friend that I have known since I was eleven asked me if I thought I was autistic. I didn’t think I was, but I did a self-test and scored above the clinical threshold. I took the test again and again, because I didn’t realize I had my own biases. Throughout life, we are told what it means to be autistic, but the narrative is so wrong. Therefore, when we are diagnosed ourselves, we don’t see it because we can’t connect with the narrative.

When I then looked back, I realized it was so obvious. When I told my siblings, they were not surprised and said: “you were just always different, Charlotte.” I didn’t social play as a child, I parallel played. I lined my dolls up, I wrote down car number plates in a booklet, I loved long lines of numbers, and I disappeared into my own world a lot. These are typical signs of neurodivergence, but back then, what we knew was limited. It went unnoticed, as it does for many girls, because most of what we know is based on how boys display their neurodivergence. For a long time, it was believed to be a male syndrome, and women were generally diagnosed with mental illness instead.

I tend to hyperfocus on things that I’m very interested in, so when I started my career, that was an advantage because I was very interested in my work. I started at 18 as an apprentice, having just made it through school and college. I had been totally absent throughout, and I didn’t put any effort in because I found it dull. They decided they couldn’t teach me and labelled me “dumb”, alongside a boy in the class who was dyslexic. Of course, when the teacher does that, everyone else does, too. It took me a long time to realize that actually, I have a fairly good intellect.

CP: Neurodiversity Celebration Week aims to bring about worldwide Neurodiversity acceptance, equality and inclusion in schools and workplaces. How did that lack of awareness at school impact your emotions and how did others perceive you?

Charlotte: I became less happy with not being noticed. My mother died from breast cancer when I was seven, so I was on my own with my dad, who might also have been neurodivergent. He was in his own world, and I was in mine. I could do whatever I wanted, and my peers were jealous of that, but actually it can be perceived as neglect.

As neurodiverse people, we have discrimination around us because the world is not set up for our sensory band. I have a heightened sense of smell and hearing. Somehow, that was turned into a disability. When no one around you has that, you are handled as if you have a narrower sensory band.

The trauma starts at birth, and it continues throughout life because the senses get so overwhelmed. I recently spoke to someone about me being autistic and having ADHD, which I had diagnosed last year, and this person said: “but you’ve overcome it.” I can overcome it as much as I can overcome the color of my eyes. It’s not well understood that as we get older, we learn to manage in a world that’s not set up for us. We feel the same as the LGBTQ+ community, or anyone who’s part of a minority group. Maybe it’s even more difficult for us because it’s invisible.

Safeguarding us when we are children is very important. Many of us have been told that we will never be independent. Parents have spent most of our childhood talking about us on social media, pointing out what we can’t do. It is not helpful for us and it will stay with us forever. You can’t ask a 6-year-old, or even a 12-year-old, for consent, because they don’t understand what it could mean later in life. Anyone under 18 needs to be protected. Somehow, parents don’t have enough places to go offline. They’re seeking other parents who have similar experiences, which is completely understandable, but we can’t do that with pictures and names.

CP: At the most senior levels, at board and in the C-suite, Neurodiversity can be hidden, and leaders are reluctant to publicly disclose any diagnoses. When you had your diagnosis, were you transparent in the workplace?

Charlotte: Before I went public with it, all my boards knew in advance. It was four years after my diagnosis before I went public. I was speaking to Autistica, a UK charity that does a lot of research into autism. They were pushing for me to go public, because it would make a big difference for someone in my position to publicly talk about being autistic. There was a real risk doing that. I was worried about losing my work. Board members, who are on average 63 years old in the UK, would just see an autistic person in front of them. In the end I realized, if I’m chairing the Institute of Directors, maybe it’s the right time to use my voice to bring more awareness. I went public in a campaign for Autistica to raise $10 million for research, but I wasn’t prepared for the reaction. Suddenly I was on Sky News, the Today program, and in all the national newspapers. People contacted me from all over the world. I didn’t have any negativity, but I did have a lot of people saying I was not autistic or only mildly autistic. Out of 50 traits, I have 42, so it’s not mild. It is so misunderstood, because the narrative was written based on the medical model of Neurodiversity.

The more influential people speak openly about their neurodivergence and use their influence to lift all neurodivergent people, the more we can drive the correct narrative to support and protect the most vulnerable in our community. There are of course people that have been around since the 90s, starting with Judy Singer, who’s autistic and coined Neurodiversity. Within humanity, we have a natural diversity in our neurology, which shouldn’t come as a surprise to anyone, but nobody had described it in that way before. She laid the groundwork and that was a significant shift in the movement. We found a word that covers all of us.

Labels have been created, such as attention deficit hyperactivity disorder (ADHD). I didn’t think that sounded like me, because I have an ability to hyperfocus, and a constant drive to move. My brain is never switched off, and I thought everybody was the same. You don’t question what other people see, hear, or smell. When people are ill, they smell significantly different, and I thought everybody could smell that because it was so obvious to me. A lot of us have difficulty with textiles, because some things just don’t feel right against our skin. People force us to be able to deal with those textures, but why do we need to have our senses walked all over just to be like neurotypical people?

CP: The Coulter Partners team have thousands of conversations every day with senior leadership and are in a privileged position to shape companies, which is why Neurodiversity and other D, E & I initiatives are so important to us. We have partnered with Differing Minds, and we are often asked what we would like raised in workshops. We talked about clients (in this case board and C-Suite) sometimes saying they didn’t warm to a candidate because they didn’t make eye contact or do something that would be described as the norm. What are your thoughts on that?

Charlotte: First you have to define xenophobia for them. Why are they afraid of differences? From a very young age, we reject differences and that’s why school is so important. If we look at the social norms in the Western world, they were probably set hundreds of years ago by a small group of privileged white men, people who were privileged enough to have an influence. Changing this is not easy because people are happily ignorant. It’s easier to follow and it doesn’t upset people.

In many companies, culture training has become standard. If you go to Japan, for example, you need to understand the culture in Japan, so you don't step out of line and know how to show respect. It’s exactly the same with Neurodiversity training. People do things differently naturally, and we need to allow people to be who they are. We are forced into discomfort because someone has decided we need to look each other in the eye, because if we don’t, people can’t warm to us. There’s an extra layer of things that we don’t know automatically and have to learn. A lot of us become observers of people and we engage once we have understood the rules.

A bell curve is used to decide what the norm is. For example, most people look each other in the eye when talking. Do they care to know why we don’t do that? It feels like electrical shocks inside, we feel the other person very deeply. I was always told to look people in the eyes as a child, because I didn’t naturally do that. I didn’t move my eyes, so people were scared of me. So, I overcompensated to make other people feel comfortable.

CP: You sit on multiple boards, interacting and interfacing with multiple organizations every day. You must see a real variety of acceptance or openness to cultures, behaviors, and understanding of diversity?

Charlotte: Whether I’m the Chair or Board Member, if someone steps out of line, I tell them it’s not acceptable. That can be uncomfortable, but people need to understand. Most people are not brave enough to speak up. I’m such a public person now in this space that people know what I stand for.

There are so many highly talented people from ethnic minorities that are also being overlooked. They don’t get chosen simply because of the color of their skin and the differences that the people choosing them feel. When you are used to not being included, whether you’re neurodivergent or any other minority, in the end, you stop reaching out. You’re tired because you have had to work your way through a lot of disappointment. People need to reach out and say they want us.

What I would like to see is mediocre people from all different minority groups being board members alongside the mediocre people that are already there. I don’t mean mediocre in a negative way, but if we think it is acceptable to go down the quality line with white men, then this needs to be acceptable for minority groups, too. Not until people stop needing us to be above average in order to choose us, have we reached that equity.

CP: In our hiring process, we could ask candidates to self-identify as diverse candidates, but we only know as much as they are willing to share. How can we encourage them to share more? And how can organizations, and society as a whole, help lift perceived stigmas in the higher ranks to move the needle?

Charlotte: People are not willing to share because it feels unsafe. For me, the boards knew already. Then hundreds of people reached out to me, which was really lovely. I suddenly felt loved by the world, which I hadn’t expected. It may just be tolerance I have experienced, but I’ve worked for 41 years now, and I’ve always worked hard and been successful. That’s an easier point to start from than someone who is at the beginning of their career.

When leaders openly identify as part of the LGBTQ+ community, or are ethnically diverse, or neurodiverse, suddenly the psychological safety improves for the rest of the organization. People then feel that they can speak up, despite having been bullied through school by teachers and peers.

As leaders, our job is to create an environment to make other people successful. Leaders who don’t do that are not leaders, they’re managers. Unfortunately, the way the world is still set up allows toxic behaviors to lead to success in the workplace. People are bullied into submission. Boards are not seeing that because they are charmed by toxic leaders. I always talk to people at all levels of organizations and listen to how they feel. That’s how you weed out toxic people.

CP: In 2021 you launched the Institute Of Neurodiversity in the UK and globally. Can you tell us a little about the initiative and its mission?

Charlotte: I see patterns in everything – in human behavior, in businesses, in numbers. When people started contacting me, I realized there was a gap in the market. There was nowhere for us to go. Parents of neurodiverse children come together, but no one ever tried to bring us together. I asked a couple of people if they wanted to be part of setting something up, and in the end, I had 10 neurodivergent people from all walks of life. This was all online because the pandemic hit but we met every month for a year on Zoom, and we still haven't met two and a half years later. We got our purpose, mission, and values in place and then we launched in October 2021. It’s been a fantastic journey, but of course we are all volunteers, and we have jobs and families.

Members, followers and supporters started coming in, and we’re coming up to 10,000 now. We are in 18 different countries. The UN contacted us recently and asked us to organize the World Autism Awareness Day this year, because we’re the only truly global organization. We’ve had two governments contact us for input to their three-year Neurodiversity strategy. It’s extraordinary and so humbling.

We bring charities together so that when neurodivergent people join us, they have access to specialist charities where they can learn more and meet people. The North Star is to have our neurological differences but not have labels on them. We want to have a million members in 100 different countries by the end of 2025.

We’ve had a lot of executive search firms with a specific interest in this space and I like that because it helps us move the dialogue. We also had the University of Cambridge contact us because they want more neurodivergent leaders on their MBA courses. It’s those kinds of organizations that recognize that we need cognitive diversity, and that different thinking in the leadership ranks can help us to make the right decisions.

CP: Finally, what would you say to people who haven’t had a diagnosis yet, to encourage them to come forward, seek information, and get support?

Charlotte: I did it to get to know myself better. Another thing that worried me a bit was, where are all the elderly neurodivergent people? I did some research into that and found that in closed institutions in the US, 40% of people are autistic - heavily sedated and often in straitjackets. We constantly control ourselves to be acceptable to the broader population. As we get older and lose that control, we display our full neurodivergence, but are dealt with by neurotypical carers who don’t like it if we flap our arms for example. With a diagnosis, at least I have a piece of paper for protection. I don’t want my children to have to look after me if I’ve got dementia, but they could take me somewhere and say, “our mother is autistic, and you will take that into consideration.”

That was a big thing for me, as was self-learning. If people want to understand themselves better and suspect that they might be neurodivergent, a diagnosis is very worthwhile because it opens your eyes to why things happened and why you do things in a certain way. It has allowed me to manage things better now because I understand that I’m not “standard” in my behaviors and expectations.

Many of us, when we’re undiagnosed, end up depressed because we don’t understand what is going on. You can work with that when you have an understanding. At the same time, I’m also conscious that social services are not fully trained yet. In many places, if you have an autism diagnosis, that can be a reason to take your child away from you. We need to push hard with all public services to ensure that they understand. We need to move this dialogue on, and the more we pull together, the more of a threat we become because we can demand equality.

Charlotte Valeur