The Big Interview: Luke Beardon

There’s a great quote from social scientist Brené Brown - “True belonging doesn’t require us to change who we are; it requires us to be who we are”.

Since early 1998 I’ve been interviewing people for various news outlets… from academics, politicians and actors to singers, chefs and all-round interesting people. 

Some were fun to talk to or had absorbing stories to tell or made me rethink things I thought or believed. But a sense of true belonging isn’t something that I’ve ever felt after finishing an interview until my conversation in late June with Luke Beardon.

A Senior Lecturer in autism at Sheffield Hallam University, Beardon has written many books on the topic focused on both adults and children. He also wrote a fascinating article that went just a little viral - ‘President Trump, you need a lesson in autism - here it is’ on The Conversation.

The interview I had planned was due to focus on autism in the workplace, and in particular on the interview process that is prevalent in most organisations, but we discussed so much more that it turned into a wider piece on autism.

Throughout our conversation many of the topics we covered are ones that had been milling around in my brain pre and post diagnosis and the hour we spent made me feel a real sense of belonging. It felt like for the first time the thoughts that made sense in my head were thoughts that others had too. In particular, thoughts around language and negativity, that by their nature fit within the conversation around the workplace too. 

Maybe it was right place and right time - I’ve spent nearly six months researching, writing and talking about autism and ADHD. Or maybe it was just hearing someone else say the things I was thinking and realising it wasn’t just me… starting with the ‘diagnosis’ process itself. Either way it was an interview that had a profound affect on me. 

“When people disclose to me or they they say – ‘I've just gone through the process’ – I always say, oh, yeah, brilliant… congratulations, that's fantastic, you know, and they're like, what?, I don't know. I've just been on my post diagnostic teaching that tells me how crap I am at everything,” says Beardon talking about how even the terminology itself is negative. 

“You get diagnosed when there's something wrong with you. That's why you go for a diagnosis… to get it fixed, and that's completely the wrong message to give to an autistic person. I think there’s a level of micro aggressions on a day-to-day basis, even within the language that we use, the narratives that we use and it's insidious. 

“You're not even allowed to be diagnosed as autistic. It has to be an Autistic Spectrum Disorder. I've got issues with all three of those words.”

During one of his courses at SHU he created an assignment for a class whose title was ‘Is autism an appropriate moniker for autistic people?’ believing it would help his students do a deeper dive on the topic. The short answer for Beardon is no, autism isn’t an appropriate moniker.

Beardon suggests that 'autism' stemming from the Greek prefix 'autos' meaning 'self' following by the suffix 'ism' referring to state of being lends itself to the myth that autistic people are somehow egocentric and looking inwards much of the time. This is contrary to his experience in which so many autistic people lack any kind of ego and make, for example, fabulous advocates for others - but often don't advocate so well for themselves.

“Secondly, I don't believe in the concept of a spectrum in terms of this kind of linear mild to severe. That's complete nonsense. I hate function labels and all of those sorts of things, and then it's categorically, in my view, not a disorder. So even the language right from the outset is horrific.”

Once you’re diagnosed, says Beardon, there’s a tendency to be told what you’re not very good at, where you’ll have problems and all the things that will impair your life. Whereas the senior lecturer’s classes are diametrically opposite to what most people are told.

“To be blunt about it… we, as in society, are killing autistic people by those narratives, by those micro aggressions, by all of those myths. So it's a dangerous game. And that's why, you know, even disclosing to people, I would say to people just be careful, because the amount of nonsense that will get reflected back to you can be really damaging, like really damaging.

"It’s inadvertent gaslighting. But it's still massively impactful. Usually negative.”

We discuss my experience (which I’ve written about here) on outdated ‘support’, suggesting that one of the things I should do as an autistic adult is understand how to make better eye contact, to study faces. 

“It's another interesting one where the the predominant neurotype skillset is imposed. I don't think it comes from an arrogant perspective, but it's almost like ‘this is how life works’. So therefore you've got to have these set skills. I think, no, that's how life works for you. That's the whole point. It's like the most simplistic and perhaps most obvious example is eye contact.

“I mean all of the myths about eye contact, you can't be autistic because you've got eye contact, or all that total nonsense.

“But actually, then, it's like, no, we've got to teach you eye contact because it's really beneficial, because you learn an awful lot through having eye contact. No, the predominant neurotype gains a lot of information, apparently, through eye contact. Autistic people don’t. It's that imposition of if it's like this for them so it's got to be like that for you… but that's the whole point, there’s a neurological difference. It's a bit like saying to a blind person, well, you know, if you just really concentrate, you'll be able to see. It doesn't work like that.”

‘Just let us do the job’

On the topic we were set to discuss – workplace interviews – Beardon asserts that when organisations say that their systems work for people, what they really mean is that those systems and processes work for “most people”. He also believes that the current approach to workplace interviews is broken and only works for the demographic norm. 

“If you're on the periphery of that demographic norm, then by definition, there's a high risk of it not working. 

“So if you're autistic by definition, you are not most people, in which case, presumably it doesn't work as well, or at least has an increased risk of it not working well. So I think that's where so many neurodivergent individuals are disadvantaged on a day-to-day basis, because society by definition… the processes and systems utilise communication and everything that governs how we live on a day-to-day basis, which is in the main built for the demographic norm.”

Beardon points to the fact that nearly everyone who has ever worked in a job will have known a colleague who is, or was, really bad at that job. All of those people came through an interview process. And he points out that when a company moves on from that person, they revert back to the same, broken processes to hire a replacement.

“That’s really weird. Interviewing doesn’t work full stop, let alone for the neurodivergent community. Years ago I was on an advisory group to the government around employment of neurodivergent individuals and I was facilitating a workshop. Almost everybody in the room just said: ‘Don't interview us. Just let us do the job for two hours or two days or two weeks. Whatever you can let us do, just let us do it. If we're not good at it, don't employ us. If we are, then give us a shot’.

“There are so few jobs that reflect being interviewed. And that's my biggest bugbear with interviews. The skills that you need to come across well in an interview so rarely match up to the skills you need for that job.”

Whilst the author believes interviews for many roles should be scrapped, he suggests that companies who continue to do it can make many changes that can be done completely free of charge to make the process better.

“It just takes a bit of motivation and effort," he said.

“If you are going to interview. My view is that everybody gets interview questions well in advance, so everybody's at the same level. Otherwise all you're doing is judging an individual's processing ability and speed of processing in a stressful situation.

“If that's part of your role, then that's fine. So if you are going to interview one of the reasonable adjustments I put forward in my book 'Avoiding Anxiety in Autistic Adults' is the more options there are available to the autistic individual to meet any given requirement, the less chance there is of discrimination.

“So basically, if we only provide one option for anything, then there's massive risk of discrimination if you're a minority group. So actually, the more options there are that anybody can choose from, the better. For example, if you were to come on my course, you can write an assignment. You can do a presentation, you can have an interview. You can do a pre-recorded audio. You know… there’s different ways of you passing your assignment. It doesn't have to be a 5,000 word written assignment.

“And they're all equally valid. It's all knowledge transfer, that's all I'm interested in. Do you have an understanding of the subject? Just because one is written and one is verbal doesn't make any difference to me. So why can't we do that with interviews?”

Beardon argues that this is also relevant before an interview even takes place, suggesting that the fact there’s normally only one way to apply for a job is also going to put people at a disadvantage. 

“That is going to discriminate against people who don't operate in that way. Rather than you need to fill in this application form with these boxes. Why not do a screencast of yourself answering those questions. There's loads of different ways to do it.”

The art of language

Beardon toyed with the idea of writing a book called ‘Language Matters’, but decided he’d “probably written enough about language already”. But it’s an important topic that we discuss at length - how do we gently persuade individuals to understand that their worldview can’t be applied to a group of people who neurologically process information differently? It’s when he introduces the concept of Wittgenstein's Lion.

Referring to the idea from philosopher Ludwig Wittgenstein that even if a lion could speak, we wouldn’t understand it because different forms of life and experience shape our language and how we understand it, making some perspectives incomprehensible to others.

“We share language, but we don't necessarily share the same conceptual understanding of that language because of a different world view. So Wittgenstein's Lion comes in and starts talking English to me.

“Wittgenstein would say we still wouldn't understand each other because his or her worldview is so completely different to mine. I think that's a really useful concept when it comes to the autistic individual and the non autistic individual to accept that they might share language. But that doesn't mean that they share understanding. 

“So maybe there needs to be a third option rather than having your language clash. Third options like right, we're going to agree that this is our platform of mutual understanding. So when I say to you I'm anxious, and you need to leave me alone. You don't interpret that to mean oh, you'll be fine, just get through it. You need to actually believe where I’m coming from.

“That takes a certain personality type of the predominant neurotype to accept that. And I don't know where you find those people, but you surround yourself by either like minded people in terms of neurodivergence, or people who are willing to accept that their world view is different to yours, and it's able to bind.”

Beardon has just finished writing a new book titled Reasonable Adjustments for Autistic Children, which comes out later in 2024, which has a very clear message.

“One of the reasonable adjustments for children is to actually believe autistic people when they say something... at least consider that what they're saying is valid and the same for autistic adults.

“You might not understand and you might not agree, but not accepting the autistic voice is just invalidating. It's just extraordinary.

“Even at that very basic level. I don't think these conversations are happening, and even if they are, they don't seem to be having much of an impact.”

The paradigm shift

It’s not just the language that is used by many that Beardon believes needs to change but people’s understanding of autism itself. It’s something that he believes requires a total societal change, a paradigm shift, which is hard to make happen.

“What you think you know about autism... What people say about autism is almost entirely up for question in relation to its validity. We still, you know, people have common misunderstandings that autistic people can't empathise, for example.

“Our understanding of autism is wrong, which means that we're never going to get it right for autistic people.

“We've got to throw it away and start all over again.”

Suicide and autism

A relatively recent study, which stated that autistic people are around nine times more likely to die by suicide than non-autistic people, showed evidence that suggests that 66 per cent of autistic adults have considered suicide, compared to the UK general population, where the rate is about 17 per cent.

Furthering that academic work, Beardon hopes to delve deeper into the issue. 

“I'm currently engaging with a group of individuals around autistic suicide. A long time ago I decided I wanted to at some point write a paper called ‘Why do autistic adults want to kill themselves?’

“I just sat on that idea and I thought, that's a really good title for a paper but as I got more and more into academia, I became more and more aware that it would be very difficult to write, to get through ethics and to do the actual research. But I am part of a research group chatting to autistic adults, trying to answer that very question.”

Working with another university, they put a post on X asking for responses to see if there’d be interest in anyone talking to them. The hope was to get 15 people involved. Within 28 minutes of the post going up they were overwhelmed with more than 300 responses from around the world with people wanting to tell their story.

It matches a point by Beardon that suicide isn’t necessarily more prevalent, but people talking about it is. 

“I talk about it at most conferences I go to now. The statistics aren’t just a bit clickbaity, they're spellbinding. Autistic adults are not lasting as long as they should do.

“The biggest single killer of those individuals dying young is suicide.

“I imagine most people in the autism community have some affiliation with suicide. That's not a normal thing to say. It isn’t and it shouldn't be. I think everybody in the autism community doesn't take it for granted, but they either tried it themselves, or they know somebody else who has tried. But I think outside of the autism community, it's again, this is one of those things…does anybody really care?

“You’re nine times more likely to be suicidal or commit suicide as an autistic adult and almost all of the funding goes into stuff like genetics.

“Almost none of it goes into autistic well-being. That's the biggest thing for me that nobody is talking about. I'm a huge advocate of well-being and keep asking the question at every juncture, of every policy, of every school plan, of every EHCP... why isn't the very first sentence written something along the lines of we all are in agreement that everything we do has to increase autistic well-being?

“That should be the absolute primary goal every step of the way. And it's not. It's how do we get autistic people into employment?

"How do we get autistic people so they don't need counselling, or whatever it might be. It's like, no, you're missing the point. What does autistic well-being look like and how do we achieve it? I'll bang on about that forever.”

Banging on about autistic wellbeing is a great way to end our conversation, because talking about these type of topics is one of the reasons I launched The Moment in the first place. To discuss topics that matter within the community. My conversation with Luke reminded me that many of the thoughts I’ve had in my head… the ones that I thought I was alone in thinking… are ones that many within this community wrestle with a lot. He reminded me that I don’t need to change, that I just need to be who I am. So for that, Luke, thank you. Never stop banging on about what needs to be said because without people like you, things would never change.

You can follow Luke on X here, read his blog here or apply for the postgrad in autism here. You can buy his books here: Autism in Childhood; Autism in Adults; Avoiding Anxiety in Autistic Children; Avoiding Anxiety in Autistic Adults; What Works for Autistic Children; What Works for Autistic Adults. You can pre-order Reasonable Adjustments for Autistic Children here.