Neurodiversity Lunch and Learn 13 March 2023
Charlie Hart
Hi, everyone. Thanks for joining. I’m here today to talk to you about neurodiversity celebration week, with a focus on lived experience.
Just got a few rules. While they’re not really rules as such, but we’re here to respect and celebrate differences and different communication needs, so if anyone wants to turn cameras off, please do. If anybody just wants to read the transcript, that’s fine. If you not comfortable speaking out loud, please do type in the chat. I’ve got Martin and Mandy here today helping facilitate. If anyone does want to ask any questions anonymously, they could message them separately. And if anyone’s got any points or any feedback or any further questions after, that’s fine, just drop anyone of us a Teams message. Basically, I want to include as many people as possible, whatever your communication style. Please do ask questions as you go along, either verbally or in the chat. Don’t worry about putting me off and making me lose my thread, because that’s why I’ve got slides. It helps me to re-focus. Most of all, enjoy it.
I do have a few definitions, but I’m not going to labour the point too much because we already talked about this in the recent town hall meeting.
Neurodiversity is shorthand for neurological diversity. And it basically means that all human brains are wired differently, and that that’s a good thing. And we should celebrate it. Neurodiversity was coined by Judy Singer, the Australian sociologist, although the idea and the language is still evolving.
Neurodivergent is another word that you’ll hear me use, or neuro-minority. When I say neurodivergent, I’m talking about individuals that have got some kind of differently wired brain, and it could be that they’ve got a lifelong neurodevelopmental condition like Autism, ADHD, dyspraxia, dyslexia. Or it could be that they’ve got accident-related brain injury or stroke or something like that, which we think of as being acquired neurodivergence, so they might have been born with a more typical brain and then something happened during their life that has changed the way their brains are wired. And this is also true of acquired mental health conditions such as OCD and bipolar. But the important thing to understand is when we say neurodivergent, that is not a medical diagnosis. You cannot be diagnosed neurodivergent. It’s just a socio-political term that helps us understand human differences and what value we can bring to society, or differences in what we might find challenging and have support needs with.
The neurodiversity paradigm, then, is regarding those differences in a non-pathological way. So, it’s not about medical diagnosis. It is about accepting that all human brains are wired differently.
The neurodiversity movement, then, is a social movement towards advocating for neurodiversity acceptance and inclusion. It is about replacing the negative deficit-based stereotypes with a more balanced valuation of gifts and needs.
And another thing to remember is that you can’t fit people into neat pigeonholes; there are a lot of overlapping traits between the different types of neurodivergence and a lot of people might have more than one of these differences.
And why this is relevant in the workplace, really. Being inclusive of different individuals is the right thing to do, but also if we can include neurodiverse people in the workforce, we can leverage the things that they’re good at. Many neurodivergent people have spiky profiles, which means that they are particularly strong in certain areas, they might struggle with others and need more support in others. Rather than being good or rounders, there may be people who can really add a great deal of value in some ways but might need specific support tailored to their individual needs.
Thatâs a few quick definitions, and now I’d like to move on to talking about lived experience.
My colleague Carly in HR, she has ADHD, and she’s given me this quote:
âWorking with ADHD can be beneficial. When I’m hyper-focusing on the task, I can complete something in less than half the time it could take. The difficulty for me tends to come from outside distractions or a build-up of tasks feeling overwhelming. It can be difficult to choose where to start and I’ve had to learn to take what I call âmind breaksâ when I’m feeling overwhelmed or overstimulatedâ.
Carly
If anyone’s got any questions, I’m happy to answer.
Charlie Hart
Cool. I haven’t put a name on this quote from a dyslexic member of staff at tlTogether because she’s not here and I didn’t get chance to ask her if that’s OK, this I have got this one in anonymously:
âWhen you’re always the last to complete a task, you can feel like a snail, which is hard in this society. When I struggle to understand how to do something, I may need to be shown many times. still need to learn how to do it myself, so I need patience and understanding.
I struggle with reading, writing, and spelling, but I’m good at many practical things in life and people do not always see this, which can make you feel like you must excel in the things you can do in life so people can see that you’ve done well for you.
When you work in social care, you need to be a caring, compassionate person. If you’ve gone through a lot in life, this can make you a softer, more sensitive person. This is not something you can be taught. It’s something you are. Our service users need to feel like they are listened to, and as members of staff, we also need to feel listened to, cared about, and treated with compassionâ.
Itâs shame she couldn’t be here today, but Kelly is recovering from stroke, and she has provided these quotes:
âI struggle with fatigue. When this sets in, I find my workload can be too much. I can identify when this is going to happen. Most of the time by being open with my manager, letting him know what’s going on so he has a better understanding and that has helped me. I have a supportive manager who takes the time to listen and helps replan my workload or gives me extra time. This makes me feel listened to and supported well by my manager, allowing me to do my job well.
Being open and honest about my struggles with my line manager and ODM was the best thing I could have done to gain the correct level of support. By doing this, reasonable adjustments could be jointly agreed and put in place. We jointly started to look at the barriers I was experiencing and thinking creatively about removing them for me to still be able to do my job that I love, that I’m passionate about, while gaining ongoing support.
I’ve also found that being part of the inclusion group is an amazing experience and so positive for me. I’ve gained support through talking about our shared experiences, and I found this as a powerful support tool for me from mutual support. Talking through the barriers that still occur. By doing this, we can influence positive changesâ.
That’s a powerful quote from Kelly, who’s got great support at work already and has found that by joining the Accessibility Inclusion Group, which is the group for neurodiversity and additional learning needs, she has been able to really get a sense of community and mutual support.
If anyone is interested in joining that group, please do have a look at our Internet page and drop an e-mail or a Teams message to Mandy.
Shall start talking about my lived experience now?
This is me at school, have gone back a bit further for mine, and this is a picture of me and my brother wearing hand-knitted jumpers and looking very cool and âswaggersâ as my daughter would say.
I was a loner and tomboy at school. Oh, I doodled a lot in lessons and daydreamed and looked out of the window a lot. I had very intense interests, so there were some things I knew a lot about, like I was interested in birds, and I basically revised the field guide to the birds in Britain and Europe so I could identify any bird and tell you their habitat, just for an example. I was very obsessive about bands as well – I was fascinated with the band Extreme, I was in the fan club and followed them around and learned how to play all their songs.
I had a couple of quirky friends, but none of us knew we were autistic. But we were quirky misfits and odd-bods and with that a bit of a target for bullies as well. I was into amateur dramatics where I found a lot of fellow weirdos, including my cousin. When I say weirdo, I mean that in a positive, affirming way. I don’t consider it to be an insult at all, because the best, most interesting people to me are the weirdos.
I really struggled with homework and revision, even though I was academically gifted and bright, I just couldn’t get going on any of that stuff, and I really needed to indulge my special interests when I was at home. So, although I was in the top set, I was never going to be one of the highflyers that achieved the top results.
And I was bullied at school for being unfashionable and clever and âsquareâ. I was a bit too posh, and I didn’t have fashionable clothes, and that was in a school where there was no uniform, which was really unfortunate for me.
And my frame of reference for autism, when I was a kid, was my brother. My brother is Autistic with ADHD and quite profound learning disabilities. So, to me, that is what autism looked like. He was special. He was in a special school. I was the kid that was drowning under the weight of potential, so I had school reports that said things like âCharlotte would do well, if she would apply herself to her work and stop staring out of the window. She’s got great potentialâ.
Early adulthood, at university, I got myself into all kinds of trouble because I wanted to prove I wasn’t square and that I was daring and adventurous. And yeah, it left me quite vulnerable to abuse. I was looking for validation in all the wrong places and had issues with drink and drugs and disordered eating. I really couldn’t cope with university life. The things that my intellectual peers took for granted like using the library and working out how to join the computer room and where to sit and how to integrate myself into a group of people in seminars kind of thing, I really struggled with any of that. So, I spent most of my one year at university hanging around with bikers and rockers, who I found I could get on with effortlessly, and not actually doing any study. The fact that I’d got through school just being interested in the subjects that interested me, taking things in, and remembering them but not actually studying meant that I was hopelessly ill-equipped for university, so I ended up dropping out and I had a succession of unsuitable jobs and no degree and big debts. And, yeah, I was a mess really.
But then I was really lucky because I landed on my feet and in 1999 I got a temping job in HR and realised that I was really interested in people, data and projects. I learned how to use Excel, and how to use HR systems, and I really got into that, found my niche and my first HR Systems Analyst role in 2002. There I could leverage my strengths, my analytical, methodical, meticulous approach to work and my visual memory.
And yes, I still had communication differences and I struggled with meeting behaviours and didn’t know why. And at times I was easily overwhelmed, like if I was working on two conflicting projects at once with different priorities. I would quite often tip into burnout then which looked a lot like depression for me. So that’s what was diagnosed, every time. Knowing what I now know, I think it was autistic burnout.
I was finally diagnosed autistic in 2018, after my son was, and I realised in 2021 that I’ve got ADHD as well. I’m in the diagnostic pathway for that as well.
I responded to this by turning into quite an evangelistic, happy clappy flappy neurodiversity advocate, and I preached about the joys of being different and what we can bring to society and the workplace. I’ve been quite more measured and moderate in my views since then, having gone through some personal tragedies, but at that time it was like âgreat, yay, I’m autistic. There’s a reason why I struggled with things that my intellectual peers took for granted, why I’ve struggled all these years, and now that I know that I can unlock understanding and self-compassionâ.
Some of the things about autism that makes me good at my job or gives other autistic people strengths in the workplace: I can be methodical and have fresh ideas, be tenacious and resilient. We’re good at problem solving. We might have good visual skills and memories and the ability to retain facts. We can be really accepting of differences. We can have good integrity and a strong sense of justice and right and wrong.
And it is different for different people. Every experience of autism is unique. Autism can coincide with other neurological differences like dyslexia and not no one person will identify with every positive feature of autism, but it’s quite common that we’ve all got spiky profiles and particular things we’re good at, and things that we need more help with.
We all have individual skills and attributes that are as unique as our personalities, and that’s the power of neurodiversity.
And just to say, neurodiversity is not only about people with neurological differences; it is about everybody. It is not some neat way of separating neurodivergent people from neurotypical people.
I don’t really think neurotypical exists. I don’t know any standard, normal, average, typical thinkers. So, it’s just a difference between being neuro-normative where your brain works in the predictable way or having a particular flavour of brain wiring. It does come with challenges though, so I’ve got social differences compared with neuro-normative friends.
I struggle with social anxiety, and I can gabble a lot and sometimes talk over people and dominate meetings.
I do experience meltdowns and some autistic people experience shut-downs which are similar but more inward-facing whereas my meltdowns are quite explosive. Think of it as the difference between a volcano erupting or something imploding.
And then autistic burnout. When we’re masking and passing as neurotypical for too long, or we’ve just got a lot of conflicting inputs and a lot of sensory overload for too long, and we can’t cope anymore, we can go into burnout.
Sensory processing sensitivities. In my former office, I had a lot of issues with the noise of the air conditioning, the rumbling noise used to make me feel sick and tired. And I have had a lot of colleagues that struggled with the very bright fluorescent lights there as well.
Hyper empathy. I really struggle if I’m working with a lot of people that are in a low mood and depressed and it’s because I pick up their mood, so I’m empathic, and this is this is true of people from all kinds of places on the autism spectrum. My brother has quite serious, profound disabilities. He’s extremely empathic as well. And this is one of the sorts of myths that we like to turn over in Neurodiversity Celebration Week. So many times, I’ve heard people say you can’t be autistic because you’ve got empathy, and that’s harsh and not at all true. We just don’t always express it in a way that people might expect.
I often we have a need for clarity and a need for expectations to be set, so I might get overwhelmed if I get a lot of different pieces of work coming in at once and with no deadlines, or if they’re vague.
Finding change and transitions difficult and office politics. And yeah, it’s taken me months rather than weeks to settle in here and I think that’s partly due to my autism, but now that I’m getting to grips with the system and getting to know the people, I love it here. But if you’d asked me in my first couple of months, I probably wouldn’t have thought I would stay around. But I was there for seventeen years in my last job.
And the stigma can be difficult to overcome, which can impact negatively on our mental health. Especially when we go for support, and we’re just met with the medical model of disability that sees neurological differences as deficits and impairments. Some of the language that you might go through in the diagnostic pathway can be really self-esteem destroying, and it is so unnecessary. We can be targets for bullying as well, particularly at school, but also in the workplace.
We’re also prone to rejection sensitive dysphoria, which is when we over-react and really internalise anything that’s seen as rejection and it is not necessarily when people say words which are hurtful, sometimes it can even be if they don’t give us positive feedback where it’s due or when someone fails to say thank-you and acknowledge that we’ve done a task.
And yes, there’s a massive overlap between autism and mental distress, and a lot of that is in difficulty finding appropriate support, but also struggling undiagnosed in a society that that isn’t built for us really. And that’s why it’s important to me to share best practice tips to help society and workplaces gradually becoming more and more neuro inclusive.
I’ve put here some positives of ADHD as well from my good friend Helen May, who works for an organisation called Belonging at Work and she was diagnosed ADHD in adulthood. She runs a neurodiversity consultancy firm now and she says:
ADHD gives her the ability to hyper-focus on things that she is interested in. It’s a very interest-based motivation system that you’re working with when you have ADHD. If someone with ADHD is in a job that they enjoy, they can be fabulous. But if they find themselves in the wrong job and say they’re working with pensions all the time when they’re not interested in pensions, or something like that, you’re not going to get the best work out of that person. So, a lot of it is about job design, and helping ADHDers through the recruitment process as well, so that they can access jobs that they are interested in. The recruitment process can be difficult for anyone who is not neurotypical.
And willingness to take risks, being spontaneous and flexible and being good in a crisis. So, so many ADHDers that I know really thrived in the pandemic, because they’re quite accustomed to dealing with crisis and unpredictability and high anxiety.
And creative ideas. Thinking outside the box.
And they can often be very optimistic. Bouncy even.
And motivated by short-term deadlines, so working in sprints rather than marathons.
There are positives to Dyslexia as well; communication and engaging storytelling, seeing the big picture, and understanding how complex systems fit together, finding creative and innovative ways to solve a problem. Strong, intuitive decision making.
People with dyslexia may have 3D spatial imagination which can make them good at architecture and design. I’ve got a quote here from Richard Branson, who says he sees his condition as âa gift, not a disabilityâ. It is interesting that he still calls it a condition.
Martin, is there a question coming in?
Martin
I was just thinking about: I’ve heard like anecdotally about there can be difficulties in getting a diagnosis, more so for women, specifically with Autism and with ADHD, and obviously you can’t get access to support in some ways until you’ve done that. Have you found that in your own experience, and have you got any thoughts on like why that is?
Charlie Hart
Yeah, definitely so.
I think that autistic women are more likely to mask, and we’re more likely to be social chameleons.
And we’re more likely to hide aspects of ourselves than our male counterparts.
The diagnostic manual and all the diagnostic checklists and things like that are very much geared towards the more male presentation of autism. So, a lot of women fly under the radar, and the same is true of ADHD. My teenage daughter is currently going through the diagnostic process for ADHD and all the screening forms are geared towards that stereotypical presentation that is the disruptive, noisy little schoolboy that won’t sit down and is running around. They don’t ask her at all what’s going on in her head, and how busy her brain is. It’s all about how disruptive she is to teachers. So, she is very unlikely to be diagnosed ADHD through the NHS diagnostic pathway.
It is getting better, and there’s a lot of social media neurodiversity diversity advocates that are posting a lot of relatable content and their lived experience, so that people can recognise themselves and they’re more likely to document and research and then go for diagnosis. Every adult diagnosis of a neurological condition starts with self-identification, so, the more we can promote understanding and acceptance and basically, let people see us visibly so that they can identify as one of us, the more likely we are to be able to get people the, I was going to say the support they need, but actually it’s unlocking the diagnosis or the self-identification so that you can understand yourself better and advocate for your own needs. I don’t think there’s enough in terms of supporting adults with their Autism and ADHD, although a diagnosis can help you get ADHD medication. But when I have talked about âappropriate supportâ, I’m talking about how I can’t get appropriate mental health support cause it’s all geared towards a typical brain and not my autistic brain that doesn’t want to talk too much about my traumas and things like that.
Matina. Is that a question from you coming in?
Matina
Yes, please. Thank you. I will. I have been captivated by the presentation, so I didn’t dare ask anything yet. But now we’re talking about diagnosis. I think it may be a good opportunity for my question, actually. But I was going to ask later which is. For me, like as a people manager, what’s quite important is to support people who may not have a diagnosis and that’s kind of like where it can be a barrier because I can kind of like work with adjustments or refer people to occupational health to do their diagnoses. But what I have found quite difficult at times is, trying to understand like how people are processing information, like trying to see whether someone is not fit for the job or whether the person may have some difficulties engaging with how the job needs to be operated in a way and the tasks and all of it. So, I was wondering whether you want to share any thoughts with us about how we are Together. At least we can go about that.
Charlie
I can. Yeah. It’s very idealistic, my take on this. Utopian, you know? But in a in an ideal world, we would have universal design principles where everything is accessible to every kind of person. When I say universal design, I mean something that helps everybody and doesn’t detriment anybody. And this started with dropped kerbs. For wheelchair users, having a dropped kerb or a wheelchair ramp, so that you can physically access the building, that that can also be helpful for people that are unsteady on their feet, and it doesn’t cause any problems to anybody else, so, let’s just do this. If there is a universal design feature that helps people indiscriminately, and it makes places more accessible to all, we can do the same with things that help different types of brain. A good example of this is when I when I was applied for my job at Together. I had been working for 17 years in my old job, and I was quite interested in the job at Together, but worried about going through the interview stage, the interview selection process. And I asked for the questions in advance so that I could prepare myself, and that’s what I got as a reasonable adjustment. But actually, Together is an organisation where we welcome lived experience and we realise the value that can bring. If that includes lived experience of anxiety, it’s a really helpful thing to give anxious job application applicants the questions in advance as well. Why stop there? It is helpful for everybody. Job interview questions in advance as a universal design principle that can help everybody. So that’s one thing. But then on the other side of the coin, we’ve got to respect that everyone is individual, and they have all got individual needs. So, catering to those individual needs is super helpful as well. When I had just got my feet under the table at Together, I told my manager, Christine, that it was causing me a great deal of anxiety that I’m getting phone calls that I’m not expecting from managers out in the business. I’m happy to talk to people on the phone if they send me an e-mail first saying can I phone you to talk about this at this time? So, can I take my phone number off my auto signature if that’s okay, and that’s what we did. So yeah, I’m not saying that I can’t speak to anyone on the phone if they can’t get into Teams meeting with me, I’m happy to support managers directly by phone, and all I ask is that they let me know in advance what it’s about so I can mentally prepare myself for a phone call, cause phone calls are quite draining to me. So, that’s my individual need and not a stereotype of autism in general. I’m rumbling on now, but I think it does that answer the question.
Matina
Yeah, yeah, yeah, of course. And like, what springs to mind as well is like, how can we enable staff to have these conversations? Like for all of that, those of us like for managers, because I don’t expect everyone to be as open and honest right from the beginning, like, especially when people have anxiety joining the new organisation, how they’re going to be perceived, like how they’re going to build relationships and all of that. So, it’s kind of like it’s a good reminder of, like, what we can do as managers across the board rather than an individual basis, I think.
Charlie
There’s a couple of things there, and I mean, if you talking about how can we help people that are anxious with interviews, the answer there is to give the questions to everybody and then that demographic don’t feel othered, they don’t feel like they are asking for the organisation to bend over backwards to help them and to give them unfair advantages over others or that they’re never going to be able to prepare for, for any social interactions once they are on board. If we just do this for everyone, then it takes that away. There’s no stigma to worry about. It just helps everybody.
And of course, because I’m an ADHDer as well, I’ve completely forgotten my other point. Oh yeah, that was it. And if we can foster a culture where people have psychological safety and they know that they can speak up about their individual needs and that they’re not risking being made fun of or facing any discrimination, then then you’ll have more people saying this is my need, and this is a gradual thing. The one builds on the other. The more people who do feel the psychological safety to role model advocating for their own needs, the more people will realise âactually they are here, and they have not been discriminated against, it hasn’t done them any harm, it has only opened doors. I have only taken down barriers to inclusionâ and then it is a self-perpetuating thing.
Martin
I was going to say within that as well, Matina, because it is just interesting and I wonder what you think about Charlie like, as a manager, I don’t think you can ever be in a position where you would suggest somebody is neurodivergent in a way or not. It just needs to be embedded into our culture that all the information is there. So, people can look it up as well. Iâd imagine that person would always have to come to that decision on their own or seek advice.
Charlie
Yeah, usually. Yeah, though there might be exceptions. I don’t know. You might have people that have got matey enough relationship that that they could say to a member of staff. âOh, you’re so disorganised and time blind and things, have you ever thought you might be ADHDâ and then just give the person the food for thought, I don’t know.
Martin
That I’d have thought like those lazy things, could be frustrating sometimes, where you know people just throw out things like âoh, maybe it’s this or thatâ.
Charlie
Yeah, armchair diagnosis is a bit of an issue. If you work closely with someone and you recognise some traits and respecting their dignity and suggest âhave you ever read around how ADHD presents in adults, or how Autism presents in adults?â I mean it’s all about treating people with dignity and respect.
Mandy
I was just following on from this conversation. I think that I think in Together we just, in most cases, I think we just need to be better at kind of showing how inclusive we are as an organisation right from the very get-go our adverts, then in the interview process, then in the induction. I think inductions really important because I don’t think we do enough in the induction to talk about inclusion, and so have those open conversations where anybody knew joining the organisation they have that induction with their manager and with their team and know right from the get-go that actually we’re really, really inclusive and it’s really a safe space for you to be able to be open. So, I think we’ve got a bit of work to do there. I’m not saying that nobody does that, because I think there’s probably a lot of people that are going through the recruitment process and induction etc that really do that. But I think I think we need to have an approach where that just becomes you know sort of second nature rather than having to check. Have we done that in in the advert? Have we done that in the interview? So, I just wanted to kind of make that point.
Eric’s question is, do we have a diversity and inclusion training for managers? I don’t know whether you would like me to answer that, Charlie, or whether you’re able to.
Charlie
Yes, please. Yeah, I know, I know this one on learning pool, but I haven’t done it yet. So yeah, if you could take this one.
Mandy
Yeah. So, the only training that we have currently is eLearning, which we, you know would expect all new staff to go through the e-Learning for Diversity and Inclusion. We have had a classroom training before, you know, would be prior to Covid, but you might have it once a year, where people could go into kind of a classroom or Teams training. So, I think we do need to get better at that. And I see Martin’s putting it in the chat. A good question. I’d assume we would, but as I said, we don’t have anything that we you know that’s regular training, but it is a question for Wayne in L&D to see if there’s any plans that we’re going to start rolling that out, I know that recently there was a workshop for managers, but then that kind of happened and then we didn’t do anything else. There was number follow up with it. So, I think it’s, I think it’s important and personally just from a personal perspective that eLearning doesn’t always cut it, does it?
Matina
Yeah, just to say to that, that we do have a specific manager’s module on the Learning Pool. So, we have like the generic one that’s for all staff and then a manager specific one. But yeah, like us, it has been already said that it is useful when these things happen in the classroom-based environment as well as it generates discussion, it fits more the values of the organisation, etcetera, etcetera so.
Charlie
I much prefer this kind of conversation face to face, to be honest. I like to do little role plays on the stage about my awkward greetings and all sorts.
Mandy
And I think if it’s face to face, you can learn so much from each other as well. Whereas on an e-learning you’re not, you’re just learning what’s on the screen.
Charlie
Yeah. And you’d also be able to see more of my very autistic mannerisms and stims and things on the stage. You might think I look super-confident presenting here, but under the table, I’m always twisting beads and that’s my stim. Iâve got to fiddle with something, and then that that helps me keep calm and focus.
End of recording
Ausome Charlie Neurodiversity Advocate 