Taking Off The Mask

Podcast Episode 66 It’s fine to be aware and even try and understand autism but actually what matters most is acceptance. This is the view of Kieran Rose, also known as The Autistic Advocate. Kieran has autism so he speaks from personal experiences and explains why he believes that acceptance is what is needed even more than awareness.

Kieran shares his personal journey and provides practical advice for both parents and young people with autism on how to manage the challenges they will face. He also discusses the way people with autism are often stereotyped and the impact that has. He also talks about what he sees as an industry that has been built around autism, and how that is actually contributing to delaying real change.

Kieran might be talking specifically about autism, but the really his message applies to everyone with an additional need. Barriers would fall much quicker, especially in things like employment, if people focused on positive acceptance of each individual’s strengths and their weaknesses, not just passive awareness.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 66 of the Journey Skills podcast. This week, I am talking to Kieran Rose who’s known as the Autistic Advocate. Kieran was diagnosed with autism later in life so he’s able to offer insights on how that feels and how autism impacted on his early life and how it impacts on his life today.

Not only that, Kieran, as the autistic advocate is on a mission to change perceptions about people with autism. He talks not about awareness or understanding but about acceptance. Because as he explains, he has autism and he still doesn’t understand it. As he also says, most people are actually aware of autism now so the next step now is acceptance. And accepting people as they are and for who they are.

This isn’t just relevant for anyone who has autism or any additional need; this is about every single one of us. As a parent of a young person with additional needs, I think her focus is about being able to do what every other person does and that comes straight back to acceptance of her for who she is.

You’ll also hear that Kieran has some very strong opinions on not only the way people with autism are stereotyped, but also the industry that’s been built around autism. This is definitely a podcast to get you thinking about some of the bigger issues.

DEBRA: Can you just tell me your story, your journey?

KIERAN: Absolutely. I was born in Essex in the UK and struggled all my life from pre-school. Kept a lot of it inside me and sort of always felt on the outside of everything but just kind of try to stuffed it within me and carry on going and carry on going. Until eventually, I was diagnosed as autistic at the age of twenty three which was sixteen/seventeen years ago.

And at that time, there were very few autistic adults publicly around. Obviously, the internet was just beginning back then so I didn’t really know what to do because everything that I read was about children and so none of it was relatable to me really. So I just popped it and carried on, went through a cycle with getting jobs, losing jobs, burning out, going through quite severe mental could kind of mental health crisis and things like that.

And then, when I was 33, I was constructively debarred from my job and my third baby on the way in obviously kind of panicking at that point and realized that I needed to sort myself out and find out what was going on with me.

So I stumbled across the autistic community online and learned an immense amount about myself and found so many relatable situations in people’s experiences that were the same as mine and eventually I kind of pushed on through that and have become an advocate. It’s my full time thing now to the point now where I also serve the social enterprise now to support parents and autistic adult like diagnosed autistic adults and I consult now for the North East Autism Society, Durham Constabulary and quite few organisations as well.

DEBRA: So, what kind of things do you do as an autism advocate?

KIERAN: Lots of autistic people advocate online and share their experiences and try to support parents where they can and I do those things but I also try to platform as many people as I can as well. So 3 of my blog I quite have guests blogs come on and I kind of blog while I was having this conversation so I have other autistic people come on share their story who don’t have a platform of their own or don’t want a platform of their own but just want to get something out.

I run campaigns. Last year, I did a social media campaign called #TakeTheMaskOff which is about autistic masking which is basically suppressing who we are and kind of going through life like that. I mean that was huge. That had to reach some blog 5 million over across all the social media platforms and things there. They’re a lot of public speaking and then the consultancy as well. I do training and helping organisations to support autistic people better.

DEBRA: So when you say training, what you do when you go in to organisations? So you’re making aware of some of the issues?

KIERAN: Yes. A lot of it is around talking to employers and like schools, businesses, public sector organisations, things like that. Going in and basically talking to them how they can support their autistic employees better or for schools, how can them support their people and students better. Things like that.

My training is very different to most autism training because a lot of autism training is very theory-based. It’s about raising awareness and I just crumple that up and throw it away. Theories are theories at the end of the day. They are effectively irrelevant. They don’t practically help people. So, I what I deliver is a lot about identity and the importance of acceptance over awareness because awareness is passive, it’s you know, you’re aware about something, that’s where you need to be. But acceptance is actually doing something. So a lot of my training is about collectiveness and actively supporting people.

DEBRA: What do you mean by acceptance?

KIERAN: Acceptance is things like well, autistic people we stim which is a physical movements, vocal movement, vocal repetition, things like that. We might make noises in things and I jiggle awful lot and a hand flat is kind of a.. the stims that I do were quite kind of traditionally what you’d expect them; the physical side of all autistic people would do.

So accepting that we have very different communication styles quite often we can be quite blunt and honest, very direct and honest and quite often just different behaviors and things which are sitting by society as abnormal. Where I come from a position of…I’m very big on neurodiversity. Neurodiversity explains that everybody in the world has slightly different brain, we have different personalities, we’re all different people but within that neurodiversity, so things like autism where our brains work very differently from the rest of the world. And a lot of what I talk about in acceptance is about accepting the fact that there are very different people in the world and just because they act differently, behave differently, speak differently, communicate differently, it doesn’t mean that they’re broken or wrong, it just means that they’re different.

DEBRA: You think we’re still at the awareness stage as opposed to the acceptance stage then, in general?

KIERAN: Yes, I think kind of. I think we just need to push past awareness completely, kind of just push it to one side. And pretty much everyone’s heard the word autism, that’s awareness. That’s it! Take that portion. Then someone acts in a way that you think is strange then you automatically start pre-judging things. Things like eye contact. A lot of autistic people don’t make eye contact with other people because it’s actually physically hurt us to do so but we judge them that. All those kind of prejudgments that come with people who act differently and acceptance is about placing the same to people you care. If someone is not looking at you, it doesn’t mean that they’re not listening.

DEBRA: So you’re saying that the sort of understanding is fine but if you’re not accepting people.. because you can understand why someone does it but you’re not necessarily accepting that it’s okay for them to do it?

KIERAN: Yes, absolutely. A lot of autistic advocates say about acceptance. People think that everybody has to understand autism. Nobody can really understand autism. I’ve been doing this my whole life and I don’t really understand autism still. Actually, we lack a lot of acceptance from a lot of people and we prejudge a lot of people and it all kind of fits into the same things.

DEBRA: Just back to the sort of thing where you said about work and you were working and then obviously didn’t keep jobs. Was that because of that general lack of acceptance of I guess of the way they were?

KIERAN: Yes, to a degree. I burnt out of college, couldn’t cope with college anymore, lots of sensory pressures and I was struggling to understand myself obviously at the time of things. And I got a job working for a customs and excise. It was two weeks on, two weeks off, just processing the IT forms so I can sit with my headphones and listen to music for two weeks and then go home for two weeks kind of thing.

It was absolutely perfect for me but then I got a promotion, transferred over to the office of fair trading so I had an hour and a half commuting to London and obviously walking through the big city and being an office with new people and it was a really, really strange environment as well because if you didn’t ask for work, you didn’t get work. So effectively, I could have sat in the office all day and done nothing which was a really hard thing for me to do because I like to be at projects and be active and so I burnt out of that.

And then started working in schools as a teaching assistant and that’s where a lot of my career’s been now, around education. But a lot around that was around before I disclose to people, attitudes change towards me. They treated me differently. Explain as I was going along and so like I was hiding, I was acting neuro typically and acting normally. Everything was fine then but the moment I stop doing that or the moment I told someone I was autistic, that was it. It was kind of everything changed. And I was pushed out at a lot of jobs, I would say my whole life after that. So that’s been a kind of path, being pushed away.

DEBRA: Can I just talk about that then, the idea of disclosure. Do you think that is something that we need to be talking about more so that people feel that they can say, ‘Actually, look I’ve these, I’ve got autism or I’ve got an additional need’. Do it upfront? Rather than and I’m kind of speaking a little bit of my own daughter thinking that she would rather that she didn’t say anything because she didn’t want people to prejudge her ability.

KIERAN: My attitude towards work if you have any kind of disability is to put on the application form. Autism is a kind of a gray area because it you know some people say that’s not a disability, some people say it is. I think it kind of is a mixture of both because society disables an awful lot of us. But there are aspects of autism which are kind of disabling so I think you need to be upfront about that and if an employee takes you to interview knowing that you’re autistic or knowing that you have a disability then at least they know that upfront they’re taking that on board.

I think a lot of the issues arise when people don’t want to disclose then they might get a job, they might make it through the interview, they might actually get into the workplace but then issue start coming up and they still don’t want to disclose but more issues start coming out and then it becomes a reason to get rid of you and then if you do disclose then obviously like I said it’s that prejudgment. There’s this assumption that goes with autism and work that autistic people are going to lead loads of financial adjustments and loads of support and it becomes a big effort for the employer to actually keep that person on or to take that person on.

When actually, that’s not true. I saw a lot of reasonable judgments are very easy to make and actually benefits lots in and lots down a little bit. You know, not having open plan offices where everybody’s talking across each other and phones are ringing and all those kind of little tiny things that make a huge difference to an autistic person. A lot of non-autistic people benefit from that as well.

So, a lot other things that when employers think about taking on autistic person, just a more mess for them, don’t be afraid that it’s going to cost you a fortune because actually the positive side of autistic people is quite often they’re very focused. You know, like I said about projects, lots of this love projects and things we can get a tiff into and manage and control, you know. So there are a lot of positives to employing autistic people but again it’s that pre-assumption that there’s negatives attached to it.

DEBRA: Back to there you saying that put it on the application form, but I guess a lot people’s mistake is that they go actually they don’t want to because I won’t even get to an interview for a start.

KIERAN: But then the question you got to ask yourself then is that if you put it on the application form and then they’re not going to give you an interview because of it, why would you want to work there in the first place? It’s a very basic and easy thing to say because obviously, there is a record statistically huge unemployment rate amongst autistic people.

Part of the reason for that is lots of autistic people who are in jobs aren’t engaging with the statistics about employment first of all because they’re safe. So that kind of excused it anyway. But to my mind, it’s kind of a lot of autistic people are out of work and part of the reason for that is because of employers and because of attitude. So, it is to admit to say kind of you know, you don’t want to work there, they’re not going to give you the job in the first place. What’s the point of them applying to them kind of thing.

It’s about weighing up your financial situation and weighing up your mental health because if you’re going to work for an employer that doesn’t want you there because you’re autistic, that’s going to break you. It really is. So, it’s kind of your life is worth much more than that.

DEBRA: Do you think it’s changed, our employers becoming better at making those reasonable adjustments?

KIERAN: Obviously, it very much depends on the employer. I think more people (this goes back to awareness thing) becoming aware of the benefits to employing autistic people and other neurodiverse people as well. Neurodiversity has become a bit of a buzz word in the in the world of work. They have a lot of employers use it but they don’t really understand what it means, either. I think things have improved but we have a very long way to go before autistic people are given equity.

DEBRA: Do you think that’s because of the employers or because when people getting I’m thinking it’s kind of like a macro/micro to me, but macro where you got the employers understanding that someone with autism can be a valuable employee and it doesn’t cost that much but when they get into the workplace, don’t you then need that acceptance of your fellow employees?

KIERAN: Absolutely. I think it’s huge societal issue. I talk a lot about there’s a negative narrative around autism and it’s driven by a lot of autism professionals, it’s driven historically by the diagnosis and about how autism has been looked at. Society has a very binary way of thinking. You’re either one thing or you’re not. Quite a lot a lot of aspects of society, binary thinking is something that autistic people are accused quite a lot. And a lot of it is a big projection I think. So, in terms of societal culture, autism is looked on negative thing, it’s looked on autistic people are incompetent, you know we can’t advocate for ourselves, we can’t talk for ourselves, there’s a lot of issues around the lack of support, the lack of money, autism, the rising diagnostic rate.

So the negative narrative, there’s lots of assumptions and expectations made around autistic people and there’s an autism industry that makes a huge amount of money out of autistic people and their families. It’s worth billions around the world. So there’s negativity that is carried around autism which is driven by this industry is actually having this social impact.

You know, all of this kind of thing that’s carried with it and that feeds into the whole employment thing as well because you put the word autism on the application form and the majority of the employers are going be like that runs through their heads, subconsciously. All of these negativity, they’re like ‘No, we’re not having that’ but then, you get into the workplace and maybe disclose to your employer or your coworkers, your colleagues, and then all of that negativity is running through their heads. Or they know a child that’s autistic who might have meltdowns, might have sensory needs, and it’s like ‘You don’t look like autistic, you’re not like this’ and so all of these kind of feeds into their head.

You’re absolutely right, this awareness (going back to the question) but you need that, you need the awareness from employers first of all, you need that understanding that there isn’t these negativities or hype and is actually not a rear reflection of is actually happening in the world. But from colleagues and things, you do need that acceptance, you need to understand that certain people just communicate differently. They might read emails rather than being spoken to. Or you know, they might like to sit quietly at lunch time and not coming to the staff room and things like that. It’s all these little tiny things that really add up and make a huge difference to autistic people and how happy they are.

DEBRA: Can you give some advice then for parents because kind of what you’re basically saying there is that there’s lots of negativity around autism in general, about the impact it has on the individual and the impact it has on the family. I know what you mentioned before about some employment (maybe some of the figures are a bit fudge) but genuinely, there’s very low rates of employment for young people with autism. So, can you give some ideas to parents and how they deal with that, their young people as well, what can they do to help change those ideas and think more positive for themselves?

KIERAN: Absolutely, I mean a lot of it like I said the negativity tends to stop when you stop accessing the diagnostic pathway and we have a child confessing by the mental children health teams are that there’s no support. There’s a lot of negativity, you know, so it’s like if you get a diagnosis no one’s going to be there to help you at the other end. So, a lot of the support comes around peer support, from parents and things like that but there are amazing parents in this world and I work with a lot of amazing parents that don’t understand their children necessarily but are desperate to and really want to, want to make that difference in their lives but with the problem with things like peer support groups is that a lot of the negativity that I spoke about before can be passed around. Those peer support groups and it becomes very like negative cycle. And that affects how you view your child and affects how you view their futures as well. Because you look at a small child and you make assumptions about, you know, you have expectations about what you want for them. Their pathway is they’re going to school, they get a job, they got a family, you know, your grandchildren and you have this whole life mapped out for your child before they’re even born really.

And a disable child comes into that mix and then smashes all those thoughts. You go for a kind of grieving process for that which is absolutely natural. You now have to live your life very differently but a lot about supporting that child is understanding that what you see in your child right now isn’t necessarily what you’re going to see in them when they’re fifteen or when they’re twenty-five or when they’re forty-five. You know, people grow. Everybody grows and changes over the course of their lives and so you look at your child as a child all your life and you make assumptions about them but you can’t do that.

What you need to do is to instil in them positivity about themselves. You need to help them understand themselves as best you can. I mean for autistic kids, the best way for them to learn is for their parents to go and engage with the autistic community and so many blogs and vlogs and people doing things like I’m doing all over the world. So, there’s so much information out there to be found which is really positive, really engaging, practical advice and things and instilling that in your child, making them understand that autism isn’t just part of them, it’s their whole neurology.

I talk about autism being neurology. Autism is neurology and neurology describes brain, nervous system, fingertips to toes kind of thing. All of that is autism. Your whole child is autistic. That’s their neurology. They have completely different way of thinking, completely body works in a very different way, they process information in a very different way and trying to carve a part of that out is actually really negative for that person because it’s smashing their identity effectively.

And I spoke about masking earlier and lots of parents will understand what masking is and lots of autistic children go to school, they buckle everything up for the day and then unleash it when they get home or hold it in for years or whatever it is that they do. And it’s about helping them understand that they don’t have to mask, that what other people think really isn’t that important, that they need to be happy within themselves and accept themselves. Keep yourself safe, yes, that’s the most important thing but just that understanding of themselves and about recognizing, embracing that autistic identity is really, really important.

DEBRA: As an advocate, where do you think we’re going in terms of acceptance?

KIERAN: I see it at the minute there are, not being binary, but there are kind of two trains; one struggling forward with positivity, understanding, wanting to accept autistic people and there’s another one channelling backwards, especially in the UK as well. The reason the education system is just tumbling bounce into behaviour and zero tolerance, DNA test with its 10 year plan is once it’s roll out behaviour therapy, the front row treatment for autistic children.

So, you have this one train that’s going forward and understanding that autistic people needs to be accepted, the difference is okay, that everybody needs to wants to compromise together and then you have this other train which is about making autistic people behave, making them acting the way that isn’t autistic. At the minute I think, in the UK especially we’re in a really kind of balancing on a knife edge of where to go and I’m hoping because just from the reactions of things that happen on social media or on online, a lot of people hopefully are changing their tuner and jumping on the acceptance train rather than heading backwards, because there’s a legacy or the impact of normalizations of things as we do have a huge suicide rate amongst the autistic community.

All of these things, all of these negativities are feeding into early death rates and mental health issues and things, so embracing the positive side of it, not just accepting. You know, obviously like I said, there are disabling aspects and there are negative points to being autistic, but it’s about not focusing on those all the time and actually looking at these people and say, “Oh hold on a minute, you have strengths. You can do this. You’re amazing at this. Let’s embrace that. Let’s let that lead. Let’s follow that lead. You look at what you need to make yourself happy.” It’s about shifting that attitudes. So like I said, I’m hopeful. It’s going to take a long time.

DEBRA: Do you think that those inspiring stories of someone who’s done well that has autism, do they help?

KIERAN: It’s kind of a 50/50 thing. I think sometimes it helps parents to look at other children or autistic adults to say ‘You know you’ve achieved something’ but I think the problem is, from my perspective and from an autistic person’s perspective, you see things like that and it’s kind of… There was one I saw the other day and it was the ffirst autistic person to pass the bar in the US to become a lawyer and I was like I’m sure there’s plenty of other autistic people that have passed that bar.

You know, it’s become a kind of “Well done, you’ve done this despite being autistic”. And probably because she was autistic that she passed the bar, you know, because of her intense focus or her ability to do these things and to have a creative and out of the box way of thinking. They’re the huge skills. It’s inspiring for some people but then it also has this really negative effects on the community, on the autistic community. Everyone who’s disable has that kind of negative kind of connotations to it and that child rightness, you know what I said before about kind of making assumptions about people’s lives and it’s that kind that feeds into that. The masking plays into that because it’s assumed that we go out of autism, but we never do because it’s us.

DEBRA: Those inspiring stories always strike me as what you just said about a well done you rather than actually that’s to be expected.

KIERAN: The connotation there is that you have the assumption that someone who’s autistic could never do that thing. When you actually look at it from that perspective, it’s actually a really, really negative thing. It’s really obviously the achievement should be applauded, everybody’s achievement should be applauded but you know, when you see something like that around social media and there’s 10 million people saying ,clapping maybe it’s good for that person but as a way of changing that societal filter power autism is looked at, it’s actually negative.

DEBRA: Yes, because it’s almost like what you said about that person is kind of fitted into a box, haven’t they? And had done a job that other people do so therefore they’re okay, people say fit in to that box as supposed to doing something a bit different and being congratulated for that. Or, you know, that sort of job is seen as being aspirational, isn’t it?

KIERAN: Absolutely, yes, it plays into a kind of a whole hierarchical thing, doesn’t it? And that we’re having that culture. You’d never celebrate an autistic person being a bean man, why not? Why would you have these assumptions about certain job. This is why I do what I do. It’s obviously very focused on autism but it’s not just about that.

I see it as a civil rights movement. It really, really is. And say alongside like feminism, race issues and it’s kind of that acceptance thing there as well because obviously you wouldn’t celebrate a woman for becoming a lawyer. The whole 10 million people on social media don’t applaud that so why would you assume it with other things as well? It’s really that kind of that thing.

DEBRA: You’ve kind of touched on tips for parents in that but what about a young person who’s struggling at the moment, going through some of the things like you went through. What kind of things can you say to them to help them or maybe their parents can tell them?

KIERAN: It’s obviously very hard in the moment, thinking back to where I was in, just a trigger warning for your listeners. I took an overdose at 14. It was because I’d muffed for years, I’ve never melted down, I was shut down, I’m selectively mute as well so I went a long period of that without actually speaking to people and sometimes week. And all of that related to kind of anxiety and things and I understand in the moment, as a child and feeling the way that I did, I couldn’t see that there was a way through that or way out of it.

It’s taken me a very long time to get to where I am and to fully kind of fully accept myself and understand there are just some things that I can’t do and there are things that I need help with and that’s not necessarily my fault. And a lot of that is about blame. A lot of autistic children aren’t given the opportunity to learn about themselves. A child gets a diagnosis, teachers get training, parents get training (it might not be very good training) but you know, they have general awareness, and the one person that never gets any training is the child. It’s expected that the parents going to pass all this information on to the child. It’s kind of it’s difficult for parents because the parents can’t get their heads around it either. And so a lot of it is about learning to accept yourself and just be yourself.

And again it’s a very easy and simple thing for me to say because it took me so long to do it but out there right now is a wealth of support and information that I never had at a young age. And I think a lot of parents don’t actually realize how much positive information is out there. I would find blogs by autistic adults and there are blogs by autistic young people, autistic teenagers, all the people who are out there putting themselves on the line and putting their life out there in public but that’s all out there for you to learn from and there are such a wealth of positive brilliance out there for you to learn from.

DEBRA: Kieran, thank you so much for your time.

KIERAN: Lovely talking to you.

DEBRA: Key takeaway? Acceptance over awareness and acceptance over understanding. It’s nice to have the first two, but in reality, only acceptance will move things forward especially when it comes to things like work for young people with additional needs.

Resources
The Autistic Advocate Website
The Autistic Advocate on Facebook

Please subscribe to this podcast and if you have a story you would like to share I would love to hear from you just email debra@journeyskills.com

Please Review Us On iTunes

If you liked this podcast and would like to help us, please do the 1, 2, 3:
(1) Click Review on iTunes (2) Click ‘View in Itunes’; and (3) Click on ‘Ratings and Reviews’ (just to the right of ‘Details’) and leave a review.