Podcast transcript: Neurodiversity in the charity workforce

Lucinda and Emily learn about the strengths and difficulties facing neurodivergent employees

This is a transcript of the Third Sector Podcast episode: Neurodiversity in the charity workforce

Lucinda Rouse: Hello and welcome to the Third Sector Podcast. I'm Lucinda Rouse, senior reporter 

Emily Burt: And I'm Emily Burt, editor at Third Sector, and this week we're going to be talking about neurodiversity in the voluntary sector workforce. 

Lucinda: But before we get to that and welcome this week's guest, we have our news editor Andy Ricketts with us to tell us about a top news story from the past week.

Hi Andy. 

Andy Ricketts: Hello Lucinda, it's good to be with you. 

So the big news from this week is all about social media. Some of our readers might remember that at the beginning of the year, the Charity Commission launched some draft guidance on how charities should approach social media. 

And it caused a bit of a stir at the time, partly because I think people were worried about the duties that it placed on trustees. Quite a lot of people said at the time that they were worried that it might cause charities to become more risk averse when it came to using social media, be too afraid to speak out, but also place unreasonable expectations on trustees just as to how they would be monitoring the use of social media, not only by their organisation, but actually by their employees. 

Would it extend to them even having to keep an eye on what employees were doing with their own personal Twitter accounts, would they have to be monitoring every aspect of social media behaviour?

Lucinda: Yeah. 

Andy: But the guidance has been published this week by the Charity Commission and I think most of those fears seem to have been allayed by the new guidance that's finally come out now. 

The Charity Commission has obviously listened and people seem quite happy that they've made some quite significant changes in some of those particular areas. And in fact, one of the lines in the guidance specifically says we don't expect trustees to individually monitor employees’ personal social media accounts, which I think has been welcomed quite broadly by organisations that have been campaigning strongly against that kind of thing to be happening. 

The guidance does talk about the importance of social media and it says that even though trustees shouldn't be monitoring these individual accounts, they should have a policy in place so that if they become aware of something like this happening, they know what to do.

And charities obviously, I mean it goes without saying, probably, that if you're using social media, you should have a policy in place that defines how you're going to use it. But also you need guidelines in place for everyone associated with the charity so that it doesn't get misused and cause a risk to the reputation of the charity.

Lucinda: Well, I think it's very positive to know that the consultation and the recommendations that came from the sector through that have been taken on board, not least the specific statement on trustees managing/policing charity staff’s social media usage. And I guess it's pretty timely as well, right, that it's just dropped now. 

Andy: Yeah, very much so, because one of the things that it says in the guidance is that the casework that the Charity Commission has been doing has showed a knowledge gap in what charity trustees know about their own organisations’ use of social media.

And we've seen that quite clearly displayed with the case of the RSPB. You'll probably remember a few weeks ago, the charity attracted quite a lot of attention over its tweet that accused the government ministers and the prime minister himself of being liars around their weakening of environmental protection.

The charity was very quick to apologise. Now the commission has opened a compliance case into the charity. Obviously the commission is recognising that this is not a good situation to be in and the commission has already said that this is a serious mistake. 

The RSPB is saying, yes, we recognise that things went a bit wrong here. We shouldn't have individually attacked ministers because of our frustration about an individual policy. We need to be hard on the policy and not on the people. 

But that case is just one small example of what can go wrong with social media, partly because often charities’ social media accounts are just going to be controlled by probably a few individuals.

So the commission is very much saying you need to make sure you've got the policies in place so that you know what to do when things go wrong, but also so that you can prevent that happening in the first place.

Lucinda: Moving on to our main feature, this week we'll be talking about neurodiversity in the voluntary sector workforce and society more broadly. 

And just to get some of the terminology straight from the outset, neurodiversity refers to the different ways that different people's brains work and how they consequently experience and interact with the world around them.

People who are neurodivergent have a brain that works differently from a neurotypical person. And in the next 20 minutes or so, we'll be asking how charities as employers can be more accommodating of neurodiversity. 

Emily: Joining us is James Cusack, who is the chief executive of the autism research and campaigning charity Autistica. He's been at the charity for eight years, and before that he was a research fellow at the University of Aberdeen.

Hi James! 

James Cusack: Hi there, how's it going? 

Emily: Great, thank you, and thanks for joining us. 

Before we dive into this discussion, for our clarity and for the clarity of our listeners, would you mind briefly explaining the difference between neurodivergence and autism?

James: Yes. Neurodivergence is the idea that you are different from what is typical in some ways. So if you're neurodivergent, you could have all sorts of differences. So you could have ADHD or you could have differences in terms of how you develop language, but it could also mean that you're autistic.

Whereas being autistic relates to a specific neurodevelopmental condition, which is about how you perceive and understand the world around you.

Lucinda:  Right. And what are some of the more common misconceptions around neurodivergence and autism? 

James: I think first of all, viewing this within a neurodiversity context, I think a big thing that people quite often get confused about is the idea that when we talk about neurodiversity and neurodivergence, that we're really only talking about a group of people who have a specific neurodevelopmental condition.

When we talk about neurodiversity, we're talking about everyone and this discussion relates to everyone. And I think a mistake that we've made with neurodiversity in the past is we think about it as a group of people sort of in the corner or a minority. 

And actually, in the same way that we think about mental health now as being about everyone, we need to think about neurodiversity as being about everyone. We all have mental health that we have to deal with. We all have to manage our mental health in order to be the best of ourselves. 

In the same way we all think about and understand the world in a different way, we all have different brains. And thinking about it in that way is really, really important for understanding how we interact with other people.

And I think it's a huge thing as a society that we haven't really got our head around yet. I think that's the first myth. It's not just about how we make the world accessible for neurodivergent people. It's about how we make the world accessible for everyone. 

I think the second myth was to think about this as a group of people who have a specific set of difficulties, and that's the only lens in which you can see this through. This is a group of people who might have a specific set of difficulties and challenges, like anybody else, but also often have a number of strengths, which are really important to us as a society, but also to organisations as well. And that's really beneficial. 

And that probably brings me on to the third myth and I think an easy thing to do here in an effort to try and defeat stigma around this is to basically almost talk about people who are neurodivergent or people who are autistic as if they're like superheroes or they have superpowers. And actually that's really not the case for most people.

What people who are autistic or neurodivergent do have quite often is some strengths but also some real difficulties. And those difficulties might be quite distinct and so those people may need quite specific types of support in order to be able to do their job. 

I think the final myth about this is really understanding that in the same way that you can't simplify what it is to be human and what it is to be a person, you can't simply characterise autistic people as well, like they all have - and I should say we all have, I'm autistic myself - we all have rich, diverse experiences, which is shaped by our social background, culture, where we're from. 

But also the very nature of being autistic or neurodivergent varies from person to person. And so the types of support that they might need also varies greatly as well. 

But I would say, despite those myths, I think that society is beginning to do a great job of understanding these things. Our awareness has really, really increased in recent years. 

It's now a case of making sure we help people to understand the key things about this issue because once they do, that has real benefits for neurodivergent and autistic people, but as I've alluded to earlier, to society as a whole.

Emily: Fantastic. And I think there are some really core points which you mentioned there. Firstly, being that this is a discussion that relates to everyone. It is about the diversity of human experience and that the ultimate goal is to make the world and to make our society and the various structures within that accessible for everyone.

So in terms of thinking about workforces and workforce population, what are the advantages of having a workforce that really reflects the neurodiversity of its employees and is accessible for them? 

James: What workforces are always aiming towards doing, and what employers have really developed a good understanding of, is if you have a team full of people who are all the same and who all think the same, then you've probably got a problem.

I used to work in academia and you've got quite a lot of similar people working in the same area, which has some benefits and is maybe appropriate for academia. But what I love about the charity sector, and one of the things I find really inspiring about working in the charity sector, is that it is actually probably more neurodiverse.

I remember when I first joined Autistica, I came in and they had all these amazing fundraisers. And they have brilliant communication skills, really, really engaging. So you've got major donor fundraisers who are brilliant at building relationships with people; trusts and foundations specialists who can really think in quite a structured way, put together brilliant applications; communications people who are thinking about how you really craft messages; people in research who are thinking really about how we get the best quality in terms of what we do.

And that could be true for the programmes team as well. So you've got this massive multitude of skills. And that makes the charity sector really rich and actually brilliant to be in. So in a way, charities are really built and really need to be neurodiverse. They need different people and different ways of thinking.

And if we're in charities, what we're ultimately thinking about and what we think about at Autistica is really how do we change things? How do we move the needle? How do we make things better for our beneficiaries? 

And quite often that means not doing more of the same. It means challenging our thinking. It means thinking about how we can innovate.

And in order to be able to innovate, you need people who think differently and think differently from each other. So we're not a 100 per cent autistic team. Because that wouldn't be neurodiversity in action. That would be just a form of neurodiversity. 

We want all sorts of ways of thinking. So we have a number of autistic people on our team, but we don't only recruit autistic people because we want to benefit from the real spectrum of neurodiversity that you have.

And we're in a situation right now where there are real challenges in terms of recruitment and hiring. So we all really need to ask ourselves as employers, how do we get the best talent? How do we get those people in that really make a difference to our cause? I really, really believe that what makes Autistica special, generally what makes a charity special, a key driver is the people that you have at the organisation. So getting those really talented people is an absolutely key thing for us. 

And the final point is that in your team, your team will be neurodiverse, right? So it's not just about getting the best people in the door. It's about thinking about your team right now. 

And the key question we always have to be asking ourselves as well is, how do we get the best out of our team? Are we getting the best out of our team? I think a very old school way of thinking about this is to think this is the way I run a team, this is the way I manage a team, and you either get on the bus or you don't. 

Now that's not to say that there aren't parameters or organisational values and parameters that we all fall within or realities. We're quite a small charity. There are just realities with that. 

But it's to actually think within the context of those parameters, how can we make adjustments to ensure that we're getting the best out of every single member of our team? Asking them from the beginning, what is it that you need to be your best? 

And that's not just about supporting autistic people, that's about supporting your whole workforce and understanding you cannot treat them like they're all the same.

Lucinda: And James, you mentioned previously that you are autistic and I wondered if you could tell us a bit about your own professional journey and your perspective as an autistic charity leader. 

You have, according to official sources, defied the odds in this respect, given that fewer than three in 10 people with autism are actually in work. What kind of challenges have you encountered along the way?

James: When I look back, it took me a long time to get a diagnosis. I was identified at the age of three of being developmentally delayed, but it took me until I was 12 until I received a diagnosis, and there wasn't a huge amount of support. 

I think the first key challenge for me was just trying to overcome almost like a poverty of ambition in a way. There wasn't a huge expectation there. There often isn't a huge expectation that autistic people manage to get into work, and I didn't have a huge expectation of myself that I would be able to access work. 

I just thought that it would be too hard. I thought the news around the diagnosis was really, really bad. And I was very fortunate because both my mum and dad and the teacher that I had were just incredible in terms of the support that they provided.

And then I had a peer group who were very, very supportive. And throughout adolescence, my expectations began to change and I went to university. And things went well from there. 

I think what I've really learned is that my experience is quite unusual in terms of the opportunities that people have. I think many autistic people don't have those opportunities, don't necessarily have in research what we call the protective characteristics. 

And what I mean by that is, I'm quite lucky. I was autistic, but I found other aspects of school more accessible and easier for me to deal with. And that meant I had a bit of a comfort blanket around me, which meant that if I didn't spend time in school, I could easily catch up. 

I think in the workplace, I was really inspired to join the charity sector because I'd grown up alongside other autistic people and I really enjoy thinking about how it is that we deliver change in particular and obviously a big interest in that has really started in the context of autism. 

And so I love the idea of working in the charity sector. I think within the charity sector I've been very fortunate. We have a very supportive team. We have a very flexible team. We are very, very accommodating of each other. And I think that's really been beneficial. 

But it is extremely challenging at times. If you're autistic, you still do face certain negative attitudes. It is changing, but you still have to come up against things. People assume that there are certain aspects of the CEO role that you can't do because you're autistic. 

People sometimes assume that I am going to be good at things, and then they get quite disappointed when they discover that I'm not. So like autistic people can have really good attention to detail. And if you read my emails, they're not always brilliantly grammatically spot-on, so it’s dealing with people's expectations as well.

And then I think as well, if you come from a community where the outcomes aren't great or the community is marginalised in some way, you're constantly dealing with your own self-doubt as well, which I think is really, really important to acknowledge too. So I think this is a huge challenge that a number of autistic people in the sector face. 

And when you talk to other autistic people, they're constantly navigating this thing of like, do I tell people that I'm autistic? Do I not tell people I’m autistic? People are really reluctant to disclose this information because they're really concerned that they may be perceived in a specific way.

Emily: That was really informative and it is so good to hear about this specifically from your perspective. There were lots of things that struck me while you were talking and I think one of the first ones was that you talked a lot about the support that you received.

You talked about luck as well but having environments, whether it's from your parents, from teachers or working environments, that were there to nurture you and to help you on your personal journey. That played a big part. 

And I think one of the most important things is that organisations are not just bringing neurodiverse people, bringing autistic people into their organisations, but then creating working environments where they can thrive and where they can progress.

And as you said earlier in the conversation, so much of this is about making sure that you are getting the best out of people, creating an environment in which they can be their full selves at work. And I found it very striking just then when you said that you often encounter people who are reluctant to disclose.

So I wonder, could you give us some practical tips on the adjustments that charities can make to their workplaces to ensure that they are being accommodating and being supportive of neurodivergent colleagues and creating those atmospheres in which people feel like they can be their full selves at work?

James: The first thing is, as I said earlier, make this about everyone. So make this an inclusive conversation because one of the things that we've heard when we've done engagement and consultation with autistic people around this is that they might not necessarily tell you that they're autistic and you might not necessarily know that they're autistic either, or that they're neurodivergent in some way. Or they might not even be neurodivergent, they might just need specific support in place. 

So make it inclusive, so everything you do. First thing obviously is just to ask. Ask people what they need. Don't make assumptions in terms of what people need. People will need different things. 

I think another key thing here is you can't make the world perfect, so there will be limitations with what you can offer. The office that we have, from a sensory perspective, it does have certain challenges associated with it in terms of its layout. And we can't always solve that, because as charities we have limited budgets.

So just being honest about that as well. And being clear on what you can and can't deliver, I think is really, really important. You can't be scared of your own limitations. It's all about making adjustments which are reasonable for people and understanding what you can and can't do. 

I think having this conversation in a balanced way is really important because we talk with autistic people and non-autistic people on our team about understanding each other, building up, like, not just as a line manager, but building up a culture of empathy; understanding what each person in the team needs and not seeing it like it's just my job, but everyone's job in the team to think about that and to understand that we need to respect those differences and understand that sometimes that will be occasionally uncomfortable. 

Like, we've all seen that in our workforce. Some people are less structured, for example, and like to be a bit more day-to-day. Other people love huge Gantt charts and being really organised and planning. Just trying to accommodate for each other and trying to understand that we all have different working styles is absolutely key. 

I think looking at your environment and looking at, okay, so what are the sensory issues with an environment? What can we do to solve that? Could it just be as simple as providing noise-cancelling headphones?

Could it be about how we help undertake our meetings? So do we make sure meetings are organised in a specific way, that follow a specific code so that people understand what they're coming into? 

And a key thing with all of these things is that in general, if you do them, they don't just benefit autistic people or neurodivergent people, they benefit everyone. Everyone is seeking clarity in terms of how things are done. Everyone wants to know what their options are. 

And I think it's about having that flexibility built in while knowing, again, your limitations. So what can we offer people? What can we do to make things easier?

I think another key thing with autistic and neurodivergent people is trying to understand what sort of support they need. Are there things like access to work that you could use? Does this person need, for example, things like a job coach or somebody who could provide support, a mentor? Or something like that.

One of the things that we see quite commonly is there's a real focus on getting autistic people into work or neurodivergent people into work. The next challenge is really how do you keep them in work? How do you keep them happy? 

And sometimes we see this thing and where the autistic person and, for example, their line manager might misunderstand each other. That creates a bit of a negative cycle which we've all seen in the workplace. And there just isn't an intervention to stop it. 

Do you need somebody who's helping to support with that? With some of the work that we've done with Deutsche Bank, we’ve found that it's quite helpful to have somebody potentially providing a little bit of support to help manage that relationship.

It's all about thinking about what the person needs as well. And then just from a recruitment perspective, it's thinking about what can we do to make sure that we're recruiting the right people as well. 

So one of the key things we ask you to think about very carefully is job descriptions. So if you're saying to somebody they need strong communication skills, do you really mean that? Because if you look at what that means, if you're saying someone has strong communication skills, that's a relative judgement. 

So, if you say strong communication skills, if I think about this from a scientific perspective, you're talking about the top 20 per cent of the workforce. But if you look at 80 per cent of job ads, they all say you need to have strong communication skills. 

Eighty per cent of our workforce does not have strong communication skills. It's not possible. What is it that you're specifically looking for? What do you need that person to be able to do?

So being realistic, because otherwise you're just going to get like all-rounders coming into your workforce. 

And then there's lots of things that we do and we've seen this in prioritising areas. We have for the last five years been sending out job interview questions ahead of time.

Again, we find that this benefits autistic people. It benefits everyone. We get better answers. Obviously there are roles where being able to think on the spot is important. So I'm not denying that you might want to assess that at certain points. 

But for most roles, that's actually not what you're assessing. So can we think about what it is that you're assessing for? 

And then we do a lot of sending out interview questions ahead of time and then doing tasks as well. So we're very evidence-led on that. We've got good evidence to show that that is an effective way of recruiting because we've done specific pieces of research.

I just want to say one final thing, going back to the adjustments point. Employers are really worried about this. They always think, okay, if I start opening the trap door, what are people going to ask for? 

And in our experience, and according to our research, this doesn't cost a lot of money for employers. And it's generally speaking cost-effective. 

So if you look at the adjustments that autistic people commonly request, they aren't particularly significant in terms of cost. So I think that's really promising because sometimes people might think this is too difficult. This isn't too difficult.

Lucinda: Yeah. You've touched on so many really interesting points and not least that really important recognition that it's not just about getting neurodivergent people into the workforce, but it's making sure that they are working to the best of their abilities once they are in the role and therefore that retention is strengthened. 

And you mentioned a few practical things such as mentorship, such as the provision of noise-cancelling headphones, such as office layout. And I fully appreciate that it very much varies from person to person, depending on what their needs are and what adjustments would work for them.

But could you just give us a quick rundown of some of these cost-effective adjustments that people who are neurodivergent commonly ask for? 

James: Yeah, so we're still at the foothills here in terms of understanding some of this. 

Very, very common things that people will ask for are different approaches to meetings and requests around how they communicate. 

So it might be that they find communicating in email or Teams easier than in meetings. Or they might prefer meetings. They might need some notice ahead of time regarding what the meeting is going to involve, so they've got some processing time to think about the meeting. 

They might want to sit within a specific place within the office, because from a sensory perspective, that works better for them. They might not like having their back to people in the office as well. It could be something as simple as that. 

They might like having more certainty over what their workday looks like and what structure to understand what it is their job requires.

It might be something very simple from an adjustment perspective, like sensory adjustments. So it could be things like we were saying, noise cancelling headphones, it could be something to do with the lighting within the office space. 

They might want to come in later or earlier to the office because the commute from a sensory perspective is quite challenging. London is an intense place from a sensory perspective, whether you're autistic or not. 

Emily: Yep. Hard agree, hard agree. 

James: So understanding these things as well, it's really, really key. If you're autistic, you can feel these things quite acutely, but it is worth asking your team how they feel about it, because they might not be conscious of it in the same way that autistic people are, but these things might also be affecting your employees. 

And when you get them to reflect on it and think about it, they might actually go, oh, actually, I do find that quite stressful, or actually, I would like a bit of flexibility and understanding around these things. 

And just because somebody is coping with it, it doesn't mean you're getting the best out of them. So again, these conversations around what it is that neurodivergent and autistic people need are then conversations you can have with the rest of your workforce. 

What I really notice, and one of the privileges that I have had being diagnosed as being autistic from 12 years old, is it does make you think about who you are. Whether you like it or not, you've been told you have a certain set of challenges. And what it does make you reflect on is who you are relative to other people. 

And what I find really fascinating is most people haven't really been asked that question of themselves. This is a great opportunity to not just ask yourself about the adjustments that your autistic people need and your neurodivergent people need, but what your whole workforce needs as well.

So again, I know I keep making that point, but I think it is an important point around just thinking, right, okay, we're all trying to get the best out of our team and make them happy. 

And we don't want just to get the best out of our team. We want them to stay as well. And we all know how important retention is in the charity sector and everywhere right now. 

Emily: This has been such an interesting conversation, James. So informative, so much food for thought. I'm sure there are going to be plenty of charity leaders, managers, people at all levels now thinking about what they can do to create more accessible environments in their workplaces. 

So for those charity leaders who might be looking to educate their staff on potentially the challenges that neurodivergent colleagues face, and to make sure that they're being accommodating of their needs and enabling them to thrive at work, I was just wondering if you have any thoughts on resources that people could go and read or use to further their learning in this area.

James: Yes, we absolutely do. So obviously we are very much at the cutting edge of this, not just in terms of what we're doing, but also in terms of the research that we're undertaking to try and understand this. 

What we're trying to do is create this cycle of improvement that we try to test and learn and see what works across different workplaces.

So to do that, we've created something called the Neurodiversity Employers Index. So at the moment, we're just going through the process of validating that. So if people would like to participate in that trial, please absolutely get in touch, because there's a huge opportunity there to really be at the cutting edge and the forefront of this.

We also have a neurodiversity and autism employer’s guide, which we've created at Autistica, which shares the latest current evidence and best practice around this. And it's quite structured and will really break things down for employers around what it is that they can do. 

And of course, people are also very welcome to get in touch with us at Autistica regarding what it is they can do, because obviously this is an open discussion.

And then just the final thing to say that we're doing at the moment is we're currently working with the Department for Work and Pensions on a review on autism and employment to really try and change employment outcomes for autistic people. 

So that's a review which is being undertaken by Autistica, DWP and has been chaired by Sir Robert Buckland and has been commissioned by the prime minister. So we're really excited about that. 

There's real buy-in from the government around this agenda at the moment. And so hopefully we're moving towards a stage where we're building momentum around this as well. So hopefully there'll be some really useful things that come out of that in terms of how employers can support autistic people in the workforce. 

Lucinda: Brilliant. James Cusack, chief executive of Autistica, thank you so much for joining us. 

James: Thank you.

Lucinda: That's it for this week. Remember you can read the transcripts to all of our recent previous episodes on the Third Sector website. 

Emily: Absolutely, and next week we'll be hearing from the Lloyds Bank Foundation about the need for small charities to participate in influencing work and how to make sure they are able to do so in the face of other competing priorities.

Lucinda: Thank you to our guest, James Cusack, and our producer Nav Pal.

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