¶ Intro / Opening
🎵 Music
¶ Welcome to Season Four
Hello and welcome to a brand new season of the Late Discovered Club. Join me, Catherine Astor and Pete Warmby, my co-host for season 4. Over 16 episodes will be creating a space to give late-discovered autistic women, people and marginalised groups of helping to deconstruct stereotypes and give the next generation visibility. ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud hynny.
A huge shout out to our community partners, A Tidy Mind, The Growth Pod, Hormones On The Blink, Nordens Not The Ordinary Accountants and Deborah Balcock Coaching and Consulting. Thank you to everyone who supports our work in your own way, the coffees you buy us, the reviews you leave us and the emails you send us. And go check out our post-discovery circles, events and mastercraft. Pete and I have our fam Ally series that's starting in February 2025 too.
And you can now buy my book, Rediscovered, which is a compassionate and courageous guide for late-discovered autistic women. Their Allies, which comes out the 21st of February and is available for pre-order. It's a book about coming home to yourself. It has chapters on everything from masking, mental health, meltdowns, and menopause. Which is all gonna help you to nurture your strengths as an autistic woman. But this is much more than what I'm saying.
I have been inspired by the incredible stories, the struggles and the triumphs of so many other women like me and their collective experiences. Over a hundred contributions spanning seven decades are reflected in this book. You are not alone. What people are saying about the book. As an adult autism psychiatrist, I believe We Discovered is an essential handbook for autistic women and people of all ages and backgrounds.
Catherine invites you alongside her in this gentle yet persuasive manifesto for discovering. Dr. Alison Lennox, consultant psychiatrist. Thoughtful, insightful and compassionate. Packed with the latest research, this book skillfully combines evidence with practical tips and personal insights. It will help so many people discover or rediscover. Professor Rory O'Connor from the University of Glasgow.
🎵 Music
¶ Introducing Dr. Helen Lawal
So welcome Helen, Doctor Helen, and welcome Pete, who is joining me as my co-host for season four. Helen, you are Nigerian born and Yorkshire bred. You are black African, white British, a medical doctor, a nutritionist.
a coach, a T V presenter, and a mum of two, and you've dedicated twenty years of studying, training, I'm working in the field of healthcare with degrees and qualifications in sport and exercise science, medicine, sexual and reproductive health care, general practitioner specialist training and health coaching and nutrition. And this is audio only, but you will have seen Helen's uh photograph on the episode and you might have seen Helen on the TV on shows like Channel Four's Food and Rap.
Steph's Pet Lunch and How to Lose Weight Well. And following your own late discovery hell then as autistic ADHD, you're now devoted, aren't you, to using all of your expertise and your experience to support other ADHD and autistic people to navigate their own health and nutrition challenges.
¶ Helen's Public Disclosure Journey
And it's worth saying that the three of us who are here today were not strangers, are we, at all. No. No. So full disclosure, Helen Helen, you're my best friend, aren't you?
I am.
And our paths crossed back in twenty eighteen and we instantly connected and neither of us knew back then that we were autistic ADHD. And we have been riding this late discovery journey differently, but in parallel to each other.
And you and Pete know each other because we've all been trainers on the National Autism Training Programme and you've been delivering cohorts with Pete. And this training that you've been doing and the podcast today It's the very first time that you have openly identified publicly as being autistic, isn't it?
It is, yeah. It's my autistic coming out interview. And I think that you're the perfect person. as well, you're the perfect people for this because you both know me. Pete knows me relatively unmasked in it from a work setting. And mm the work I've been doing alongside Pete and Pete will hate the cringe of this, but him being so confident and um open and such a strong advocate for autistic people has really helped me to accept during the months we've been working together.
And Catherine, you have just um yeah, you have just given me permission when I needed the permission to to be myself and given me that space to explore The real me and who I really am. So this feels like quite a big deal. I've been really nervous about it for weeks. This is our third attempt as well, isn't it? It is. So it feels like it's finally happening. Um so I'm really happy to be here.
¶ Autistic Discovery Through Motherhood
We're gonna start Helen today with where your autistic discovery began because I I talked about us meeting in twenty eighteen, neither of us knew back in twenty eighteen. So where was it from there then that you started to discover and explore that your autistic
feels like a lifetime ago now. So much has happened since then, hasn't it? I mean, I've now got two children, two boys. Yeah, and I now know that I'm autistic ADHD and I think really the starting point for my self discovery journey was Post pandemic. It was actually probably 2021 and becoming a mother for the first time. I think that happens a lot, doesn't it? I think a lot of women find that.
during certain times in their life. Um motherhood is one of them. I know that puberty could be another one with fluctuating hormones and menopause. They find that they're experience of being neurodivergent can feel um so strong and it can feel well for me it felt like what is this? I'm really not coping now and I had to go back into the NHS. during the pandemic to work as a GP on the front line, having had a baby
having sort of living through this awful time and I tried to go back and it just felt too much. And I actually had a period of time where I was for the first time in my life I was signed off work. And as a result of that I I reached out, got help through the Practitioner Health programme, which is the GP service um for doctors.
And it was through that I started working with a a therapist and the lovely Caroline. And she was the first person I'd you know, I'd been seeking help for years really. I knew something wasn't right. I knew I was different and at the time I thought something was wrong with me. What of course now I've learnt that it's not that anything's wrong with me, I am just different. But
I'd, you know, spent a lot of time trying to find the answers to what could explain the way my brain's working and the way m I'm experiencing the em my emotions and my senses and my workplace and my relationships. And she was the first person really that suggested that maybe I could be neurodivergent. I remember it really well. She she do this flower.
And in the middle of the flower she says uh there's low self esteem at the core of the flower. And I I could feel that. I think I almost had almost like an intense self loathing, which I understand a lot of autistic and ADHD people can develop.
Yeah, too far.
with me, you know, that really that just dominated my life, that feeling. And then she drew the petals round the outside and she drew um anxiety, recurrent depressive disorder, and then she put query eight H D and I completely ignored it, was completely in denial. She went, Just go away, do some research, see what you think in a really lovely, gentle way. And I did, and I began to think, Whoa, okay.
I think these this is these are the answers I've been looking for. And it was off the back of that and getting that um having that self discovery. that I then thought, it still doesn't explain everything. It still feels like there's a missing piece of the puzzle. And I just thought, although this is really hard going through this process of self discovery and therapy and going through the diagnostic process was really quite difficult.
I thought I just need to do it now. And I s I think especially when you have young children, it just feels like I really want to be able to know what it's like to feel my best and to feel mentally and emotionally well for them. Rydyn ni'n ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r hyn.
¶ Parenthood's Impact on Neurodivergent Identity
Becoming a parent, so many people on this podcast I think of your story, Pete. Last season when you came on, I mean you you pinpoint becoming a father, don't you? And you talked about that whole period. Um I mean, hearing Helen speak was like hearing you talk about your story.
Yeah, uh it's it's quite I mean m m I think me and Helen have found this a few times actually, you know, the kind of similarities in in both kind of story and experience. You know how we talk about different flavours of autistic, you know, different you know, there w there's so many different ways to present as autistic or ADHD or both.
But I do feel like me and Helen have got a lot in common in in how we experience not not least the migraines, you know, the chronic pain that we deal with. But um but yeah, hearing Helen talk about that that pattern of parenthood being signed off work.
Self hatred.
and kind of falling apart. I mean, it's exactly the same. It's just for me it was a few years earlier. Because you know, I was diagnosed in late twenty seventeen. So when you both met for the first time that was when I was coming to terms and making sense of my diagnosis, you know, uh, all those years ago. But um but yeah, you know, exactly the same kind of situation. In fact me and Ellen joke the other day about how I'm basically like two or three years ahead of her in in in in terms of
kind of figuring things out and and moving on with my with my diagnosis and working out what that means. Um but yeah, it's it's kind of uncanny in in in some ways, hearing somebody else say it in that way, but it it really does highlight, doesn't it, how how regular this this is, how how common it is, how many people struggle with parenthood and and there's such demonization of parents. in the media and society in general, you know, parents struggle or parents who who find it difficult.
And I think that there's a whole conversation there around undiagnosed neurodivergent parents who are struggling that we've we've barely even scratched the surface of.
Yeah.
¶ Reflecting on Early Diagnosis Benefits
And and I suppose the difference have you thought about this, Helen, and and Pete as well, both of you, the difference that had you have known that you were autistic ADHD before you became a parent? How what you know now about yourself, how differently you might have approached parenthood in the in the sense of accommodations, what you might have Sort out for yourself the kind of support that you might have put in place for yourself? Have you thought about that?
Yeah, definitely. I have reflected on that. I mean, you sort of go through this process, don't you, of, Oh, what if what what would would it have been like and um I fully accept that I am where I am and I didn't know. But then when I think about it, I think it would have enabled me to
be kinder to myself and more understanding and not be as hard on myself'cause I in the early days of having a baby it's difficult anyway and you're sleep deprived and it could be can be quite a lonely time, can't it? And I think I just thought I wasn't a good mother and I you know, maybe this isn't what I was meant to do and um
Yeah, I think that can be really tough. And I think it is really about then, like you say, once you have an understanding of what you need, it's being able to ask for the help and not feel guilty about maybe leaning on childcare more. um or asking for very specific types of help. um or maybe not being able to um work in the same way in a more traditional way. Um or for me, uh as I need, I don't do very well being at home and not working.
my brain needs that. I I need to work to feel well, to stay well, and I need to have sufficient challenge and novelty in my work. And I almost look in all other mothers who seem to and of course you never know the full story. sydd â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud â'n ymwneud.
you know, I used to be hard on myself about that, but I know that I need a a good mix, I need that variety to function and to be able to show up as mum, as the the mum that I want to to be.
¶ Challenges in Accepting Autism Identity
Yeah, so important, isn't it? And you got your ADHD diagnosis first, didn't you? And then your autism diagnosis. How have you navigated that whole come into terms With that label or
I think that in many ways Pete and I have spoken about this a lot that I feel like I've accepted being ADHD, I'm a lot further along with that. And there's only really eighteen months, maybe a year between those two self discoveries. I'm a lot further along. I can sort of Um, talk about that and understand that part of me. And of course, it's not like there's two separate parts of me or two different parts of my brain, but I haven't yet.
still even now um fully accepted myself as autistic. You know, and that's why Kathy, you've been asking me to come on for what, a year? Maybe more. And I just kept saying no because Deep down I think I was still in denial and didn't really think I was autistic. Um
In fact, before the podcast even began, we had a conversation, didn't we, about about doing some of this work together and and you can't you kept pushing back and pushing back. And I've just got that space open for you and and we're in season four, two years on. And you said, I I think I'm ready. I think I'm ready to come and share my story.
Yeah. I mean you can never be fully ready and it's about feeling the fear, isn't it? And doing it anyway. But I do feel I'm at the point where maybe I'm start starting to figure it out and I don't think I'm alone in that. I think that a lot of that difficulty with self acceptance and really leaning into being autistic is
uh a lot to do with how the diagnosis is uh medicalized and pathologised and the language used around it. And I think I've almost said to myself, I'm not disabled enough. I don't struggle enough. um for me to be able to justify calling myself autistic, which is bar me because I I do. I have a lot of secret behind the scenes and massed difficulties on a daily basis. Especially when it comes to relationships and friendships and work.
¶ Critiquing Deficit-Based Assessments
And um Yeah, so I think that's part of it. I also think the process of having the assessment was probably quite a negative one for me. And I think a lot of the language used there may be feel like, oh, I'm not autistic enough. And actually I've got a little snippet here from, you know, when you have your assessment and they send you the like fifteen page document, which by the way I've only just read this yesterday. After all this time.
The therapist in me, Helen, says Why do you think you've done that? Why do why do you think you've put it in a drawer and you've only got it out the day before your podcast?
I know. Well thanks for the podcast. Otherwise I maybe never would have read it. But no, it was because it felt like first of all a massive chunk of text which I my ADHD brains, not I don't have the patience to sit and read, but also really someone reflecting back. uh, you know, what you've shared with someone in that really intense way. And um I just wanted to share a little uh paragraph from from the assessment.
And I wanted to share it because I think this is an example, and there's lots of these within this assessment document. This is an example of why I and so many people I think may find it difficult to come to terms or may have a certain perception of what it means to be autistic. Um so there's a heading here which Catherine, you may have heard of this, Pete you may have come across this metaphor, the bicycle metaphor of relatively good social skills.
I've never I've never heard of that.
Okay, interesting. So he says, Later I've reflected on a metaphor, the impact of having some better than expected social skills as an autistic person red flag number one. While autistic people like yourself may have better social skills than most autistic people, the impact of this can actually be much more impairing than for someone with very poor social skills, e.g. the fatigue and stress and subsequent pain given.
you feel with successfully socialising, albeit in certain structured social situations and with particular people, will be far greater than in someone with such poor communication skills that they don't try to socialise.
He then goes on to say this could be like comparing the impact of cycling skills with In someone with enough ability to try, with someone who would struggle to go further than a few meters, the first person could cycle proficiently for a short distance, enjoying this, but then crash or fall off after a while. The second person may not even try to get on a bike and so will rarely crash. So while the second person has poor skills they end up with much less pain than the first person.
Hello night. A I it's scrambling in my brain. Like I can't I can't decipher what this person is trying to say. It's like they've picked up a metaphor and they just use it in their reports for everybody and it's not a metaphor that actually helps. And secondly オールスタッタッ
Mm.
Herman, poor, successful. Uh I'm not surprised that you have felt the way that you felt. What did you feel, Pete, listening to that?
It it it was it fascinatingly victim blaming, I thought. It was very much along the lines of as far as I could kind of decipher it. of um well it's kind of your fault for trying. Like, you know, y yeah, you you end up with pain and and sadness and misery through social situations because you're trying at all and it might be better if you didn't even bother.
It's just seemed to me to be the most bizarre kind of way of looking at the difference between a non autistic person and a an autistic person I think I've ever come across. Um And and and the the thing that made me most kind of bemused was the fact that the biggest conclusion was completely missed. Here we have a person who'd met an autistic person with good social skills. And didn't reflect on that and think, Oh, hang on a minute. Maybe autistic people just can have good social skills.
You know, th it's like that didn't occur to them. They they they saw it as a further aberration. Like there's a there's something Oh there's something wrong about that, you know, rather than Oh, maybe my understanding of autism is a bit limited and maybe it is possible for autistic people to to have good you know, this whole idea of autistic people having good social skills together, for example, approved by Edinburgh University.
You know, we talk about that a lot, don't we? The the fact that when we're like we are now together, we we can, you know, communicate pretty well. But there was no reflection of that at all in that. It was all they made the positive negative in a way that I'm so used to.
Right.
Yeah. When it comes to the science around autism. That's just the way it always seems to go.
And there's nothing in there around masking that maybe this person in front of me actually is is female, you know, she has got to this point in her life of being undiagnosed. How has she done that? Has she had to create a very elaborate masking strategy to get through life, at what cost? How is that impacting on her physical symptoms? Um
And I...
What about trauma? What about all the trauma that sits below all of these uh probably experiences that she might have had in her life where she's experienced quite traumatic things in her friendships or relationships and how does that play out as a trauma response?
I think I think this is an example of why it can be difficult is the language, isn't it? And um, you know, I spent the whole three hours with this person, the first person that I've ever shared that amount of detail with about my life. And so I'm glad I didn't read it at the time because now I know that
that's not the right language. Now I know that, you know, it's deficit based. It's saying that some autistic people are better than others. You know, it's a spectrum. And I know that's incorrect. But I know there'll be so many people out there who are having similar experiences of going through the process and going through that journey. And it really defined that's a moment in time, that discovery, that assessment, that diagnosis that really defines
yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n I mean, this was a private assessment, but something I feel that within the NHS, a place that I spent 14 years of my life.
I think we have to be so careful with the language we use, medicalising, pathologising, deficit-based, and that's something I feel really strongly about and really would like to advocate for moving forward. Yeah.
Yeah.
Yeah, it's that thing, isn't it, where the first thing you're likely to read if you don't read your own report, the first thing you're likely to read when you get home from a diagnosis, you'll go online, you'll do a search. You'll probably read the Wikipedia article on autism, which I don't know whether we've been following this, but um at at the time of recording for this, it's currently a big thing that
kind of a big argument that's going on online around how negative and how old fashioned the Wikipedia article is for autism. If you read that, you'd come away thinking, Oh my word, you know, I I'm I'm terribly broken. This is awful
Bye.
If you read the diagnostic criteria, you'll feel the same way.
I f I feel like you could go through life like listening to people who don't really understand autism, playing autism bingo of all the phrases that they say and use that probably come from a Wikipedia article like that. It's
Yeah.
¶ Navigating Self-Disclosure Responses
How how did that impact you then being able to disclose? Because we're saying that today, you know, it's December twenty twenty four, you got your autism diagnosis when?
What year was on that report? Two years ago.
For two years. What has self disclosure? Have you self disclosed in any aspect of your life? In any of your work life, in personal life? I mean, I know you've disclosed to me'cause I'm your friend. Um and I hope a safe space.
But, what about...
what about in your in your world? What's self disclosure looked like for you?
I think I gave it a go at the beginning, if I'm honest. I think I gave it a go and with some family members, most won't know. Lots of family around the world, America, Nigeria. I gave it a go and didn't necessarily get the response that I had hoped for. Um I think I shared it with friends and um there's been, you know, a small group of friends who have been very open and
and things, but I think I have had lots of responses like, Oh, you don't look autistic. I never would have known Or, Are you sure? Um and this is both for the ADHD and the autistic um diagnosis. Or um Yeah, oh it's very uh th this I'm not making this up th this is actually what family members and friends have said to me. Oh, it's um I think we're all a little bit ADHD, I think we're all a little bit autistic.
I've also been around family members and friends who will say things about other people like, Oh, they're a bit odd, they must be autistic. Um and so it doesn't always fit this in a way feels easier because I know I'm in safe hands to talk about it. I know I don't have to deal. There's so much that I'm already that we're already as autistic people already
taking the burden of there's all this additional mental load that we have to deal with on a daily basis to navigate our way through life. And I sort of got to the stage where I I just not prepared to do that, I'm not prepared to give that person the honour of me disclosing to them in that situation. And um And so hopefully I I feel like I'd like to get to the stage where and I'm getting there where I feel able to do it because I then feel very confident in having a response.
ac yn yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw tell people that they can't say that, that's not a good thing to say, and that's incorrect and that's um discriminatory. And so, yeah, I'd I'd really like to be able to share more. Um But it's not always safe, is it? It's not always.
No, and and the com the the the kind of dichotomy of it all is that the more that you immerse yourself into this work, so the more work you do in the autistic space as an ad autistic advocate or trainer or whatever you're doing
the more you're gonna come across people and when they say to you, What do you do? and you say, Oh, well, I'm an ADHD um trainer or autistic trainer or I you know, I do this or I do that You instantly are disclosing in a way, um, to people that you have no idea how they are going to react to you.
Um but I I've certainly found one of the great things that I can do now is like when I get that response from complete strangers when they ask me what I do, or they ask me what my book's about or the podcast. And they say something, I just say to them, you know what? I call them in and I say, you know what?
you need to go and listen to the podcast. Or you need to read my book. Then come back and we'll have a conversation. And I and I and that's how I deal with it now. And I think the more that we immerse ourselves into this work, the more we are exposed to these kinds of as you say Helen, rightly so calling it out, it's discriminatory.
And they're myths, aren't they, and stereotypes. It's because of the myths and stereotypes that are out there and there are so many and people think that autism looks a certain way. um only affects certain types of people. And I I would just encourage everyone, probably not your listeners really,'cause they're here because they're open minded and curious. But I just wish we could get to the point where people were curious and open minded, you know?
yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna, yna.
The three of us here are quite lucky in many ways, aren't we? You know, m myself and Catherine have written books, for example. Helen, you know, you you you've been on T V and you know, you've you worked on the NATP so So we have managed to build up our self confidence to defend ourselves against these, you know, comments and things that are said and
But there's so many who who who who haven't got that l line of defence, you know, who can't just say, Oh, you know, read untypical or or whatever you know, it's uh and and it it's it's awful, isn't it? That that is the norm experience.
And I was just thinking just now, it'll be like, you know, and one of the things that we often s say to each other when we introduce each other, or at least when you get to know somebody, is you'll eventually have a conversation about star signs, won't you? Often, you know, even in this scientific world, people will often act. And it would be a bit like saying, Oh, I'm a Pisces and somebody going, No And it's like
What? Well I was born on the twenty fourth of February, so I can assure you I am. You know, I can't do much of it. But but it's it's that that level of confidence of of of denying your reality. I'm not saying by anybody, it means that um star science are a reality. I'm just using it as an example. But it's it's the the confidence is what I am drawn to in a kind of morbid way.
Because they are so confident in their assertions. You're nothing like my nephew. You don't look autistic. No, there's no way you can be. You know, th they are so confident. And that's something that I've always found really in Where does that confidence come from?
¶ Internal Struggles and Self-Care
Yeah. And and and I suppose if you could have this space today, Helen, to Uh I suppose show some of the the struggles that you have had because a lot of the struggles that we experience. are internal struggles, aren't they? They are things that people don't often see. So I think often what Pete was just saying there, often that that confidence is a combination, isn't it, of Well, I've read about what autism is on a Wikipedia page and I'm not seeing
I'm not seeing your autistic self because a lot of it is what you're experiencing as an internal. So I'm not seeing it. So I've got this confidence then to say, Well, actually no, Helen You're not autistic or you're not autistic enough or you don't look autistic'cause you don't fit this idea in my head of what it is. What are what are some of the struggles that you have had in your life, Helen, for being autistic? Your neurology, how you experience the world. How has that impacted in your life?
I mean, I guess I ought to cover it by saying I don't really know how much of it is um being ADHD, how much of it is being autistic, but um right from a very early age my sort of experience, my sensory experience of the world smells, you know, I remember from a very young age being very sensitive to smells. Um to the point that I would vomit if, you know, to travel as a kid in certain cars that had a certain smell I'd just vomit my way through the journey.
And even now that same smell of a certain type of leather in a car will cause an ossa and a headache. perfumes. Even recently, Catherine, you and I went to a festival, didn't we, this summer and you had a perfume on it. It was a lovely perfume. But even, you know, being in a situation like that Rydyn ni'n cael ei wneud. Rydyn ni'n cael ei wneud. Rydyn ni'n cael ei wneud. Rydyn ni'n cael ei wneud. Rydyn ni'n cael ei wneud. Rydyn ni'n cael ei wneud.
And um the amount of time I've had headaches is probably more than the amount of time I haven't had a headache or a migraine, sort of became the norm, you know, this pattern this pattern, yeah, of chronic migraine of more days with a headache than without
um the strobe lights, you know? Um and all these things that have been there from a very young age. You know, I used to spend the summers going back to Nigeria where my dad's lives and where I was born and wondered why I would get headaches daily and the bright sunlight. It's the social stuff. Um, I even very recently in the past few months, you know, have friends that I think feel like it's constant misunderstandings. I have friends that perhaps have I've annoyed.
And so you annoy them and then you find yourself either do I apologize for who I am? Rydyn ni'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hynny'n ei wneud â'r hyn. Yeah, I think that's probably been my biggest challenge and and an ongoing theme o over the years. Um I think it manifests in me in anger.
I think uh up until I knew what was going on I felt like I was a very angry person and of course it was all kept inside and I wouldn't let any of it out. But um very angry and frustrated gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda'n gyda
I I believe if you're not letting dealing with that anger and letting that out and you're holding it in, it manifests in the body, doesn't it? I think that's been a biggie for me as well. And I think one example which would illustrate this would be phone calls, and Pete mentioned it earlier. I basically will avoid phone calls now and for years I just thought I was a bit weird and I used to get quite annoyed at myself'cause I would schedule phone calls with friends
And then just not be able to answer the call. Or I'd have to do it on very on on my terms in a particular way when I felt a very particular way and looking back, that's'cause I guess I had to be in a situation where I had enough energy to mask on that phone call. So it's partly that, but it partly also um
needing very clear communication. And I remember I have quite strong memories of being a teenager in my early twenties and my mum sort of being in the room, maybe when I was on the phone, I don't know, back in the day sorting out my phone bill or speaking to someone, customer services and just she would say, Why are you getting so frustrated and annoyed at that person?
And it's just that not always being able to understand things, needing very clear communication and then becoming very frustrated when that communication's not clear and becoming very frustrated when I feel that I'm not understood. in the way that I'm, you know, trying to put myself ac across. But if I'm honest, it feels very messy, it feels very tangled up, it feels very like there's
been a lot going on and and still now. And I think the areas that I've managed feel like I've managed to work on and I'm getting there and I feel like I've got good well being, I think the areas are very much when it comes to my lifestyle, you know, my nutrition and very much prioritizing. I know that I have to prioritise getting a good night's sleep and exercising and eating the right food.
Um and spending time alone and giving myself permission to spend time alone and not thinking, Oh, what's wrong with me? Why don't I wanna be around people? It's not that I don't want to be around people, it's just I have to have time alone. to be able to recharge and to be able to regulate doing the things that I you know I enjoy. Um whether that's gardening or interior design or um active things really for me. Um
So yeah, I think it's still a I'm still on a bit of a journey with figuring it all out. And I think the work I do with clients really helps me to keep stay committed to figuring it all out'cause I think when you're showing up for clients, and supporting them to do things in their life. It you know, it keeps you accountable.
¶ Communication and Social Preferences
Yeah. It made me think about our how we communicate with each other. And a lot of our communication is voice notes, isn't it, on WhatsApp? Yeah. And um and I and I talk about this in my book actually about not specifically about you and I, but about that communication style of how Communicating in voice notes, it it's kinda like you have the floor to speak. You can say you can think about what you want to say. There's no pressure of
ha it having to be two way conversation. Like you can go on and you can say what you want to say. It doesn't matter if you're pausing. It doesn't matter if you're trying to find the words that you're trying to say. And I really like it then when I get your messages back, Helen, and you kinda do them in bursts to me and I can respond to each each little burst of conversation.
And then I can say what I want to say. And it's just such a straightforward way of communicating I find. But it doesn't work for everybody. And I think this is the challenge, isn't it? That when it comes to our communication style and our communication preferences is that they can be so fluid and change. Like sometimes you write speak, want to leave a voice note, other times I can't even formulate a text conversation. Um I can't do either. Do you find that as well?
Yeah, yeah, definitely. And and I must say that my preferred way of sort of socialising is to use WhatsApp to s arrange the meetup that I will then have face to face, one to one with a person. And so, you know, it's it's that. And there are, you know, few people like you who the voice note thing becomes really helpful. But I think really, you know, being one to one with somebody in that situation, um
I think groups can be difficult and I think I probably avoid group settings. I I really enjoy being in a group scenario where there's lots of people around me. And lots of people around me, so for example, festivals, gigs. Um uh a yoga class. uh maybe even a wedding where I'm surrounded by people. I like that sense of community, but then I don't necessarily have to have the small talk and communicate with people.
And so I do tend to avoid situations where it's a group setting where you're expected to talk with multiple people sometimes at the same time and sorts of different situations going on. That would definitely trigger a migraine without a doubt. Um Even sometimes with family, you know, who know me really well.
And so yeah, I think you really learn what works for you and the people in your life who like that and that suits them too, they'll stick around. And the people that don't won't. And I think part of it is having the confidence to say you know, sometimes you have to let go of people, don't you? And and ways of doing things. And I think that would be the one thing I would probably say to my younger self would be
it's not about being popular, it's not about having lots of friends, which is how my early university days looked. I was like, Okay, yeah, lots and lots of friends. It's really about finding the people who understand you, the people who can hold that space for you, the people you feel safe with, the people that you can show up and be yourself with. And um I think that's the one thing I, you know, wish in hindsight I'd
worked on more and put more into that. Um because it's really the quality of relationships and it's connection, isn't it? Um we need connection. We all do. Yeah. Um But you don't
But you don't know that if you're not sure. If if you don't know this about yourself. In hindsight you can say that, can't you? That I wish I'd have I've I would have focused on that, I wish I would have done this. And this is the thing about well, this is what I can focus on now going forwards. And it makes all the difference, doesn't it, when
when somebody recognises that we have different ways of communicating and that just because something works for you doesn't mean it's gonna work for the other person. It doesn't mean that it's gonna continue to work for that person. And I know getting to know Pete and and doing this podcast together. you know, checking in with Pete and asking Pete, do voice notes work? Or are you a text person? Um
Am I okay to leave you a message? Would you prefer a phone call? You know, they're not they're not hard questions to ask people, are they?
No. But we have uh as a society we seem to have a deep aversion to them. It's like we can't abide meta talk. Like we c we can't cope with talking about talking. We just want to be able just to do it. I and I say we here as kind of society rather than us three. I think I think autistic people by our nature we we become far more used to metatalk. We've become far more used to talking about communication'cause we have to.
You know, we really have to because it's so different for us. Um, but I think generally speaking, people really do feel very strongly that they should just be able to communicate however they want to communicate and talking about it is almost taboo. You know, it's it's off the table. Um, which which can make things very difficult, you know, because uh like you've been saying, you know, things like asynchronous communication
where you're not necessarily talking at the same time, you know, where one you know, you you text each other probably over the period of a couple of days, you know, at random times. That's often how autistic people communicate bet. When we don't have to worry about turn taking. We don't have to worry about info dumping. We can just do it. We can just give all the information in one go and walk away. Wait for the reply when it eventually comes. That's often how we'd work best. But
I don't know whether the neurotypical world is ready to have that conversation with us about that and how that is okay. It's just a different way.
¶ Advocating for Inclusive Environments
Yeah. And have you found yourself, Helen, then, expressing your needs more, really doing the things that you need to do for yourself? Do you have you found that? That you're doing that more and more?
more. Yeah, definitely. Absolutely. And um an example I can think of is in the world of work and you mentioned before about my T V career and there's an example recently where um I'd been asked to work on this new T V show and um I really wanted to do it. But I knew that to do it, you know, working on T V it's
Sensory nightmare. Bright lights. I mean really bright lights in your face. Working with multiple different people at any one time that you've never met before. Needing to talk to the person that you're interviewing who's interviewing you, but also having input from other people. and the travel. Um and that was probably the first time in that particular part of my career that I've actually had the confidence to ask for what I felt I needed.
um, to be able to really perform. Because it it is, you know, certain jobs you you do have to perform. You you know got a moment in time, you've only got one take. It's a little bit like the training we've been delivering. You are on And um yeah, I think that's probably one of the first times I've really had the confidence to do that. I think part of that is you don't always know what you need because you've been so used to managing and struggling and that being the norm.
that actually it's about thinking about, oh, in an ideal world, how would I like things to be? And so that's what I do now in in all aspects of my life when I'm you know, I'm looking ahead to um, this next year in in my business and my work and thinking, in an ideal world, how would my perfect day look? How would my perfect week look? Um, let's go for that. Let's ask the questions, let's advocate, let's push to get that. Um and that can be really hard when that's not honoured.
That can be really hard when people say no and I've I've I've experienced that. I've experienced a no. When people decline those reasonable adjustments or respond to them in a way that then makes you feel like, Oh, am I asking too much?
Am I being needy? Am I being all these oversensitive? All these, you know, this self negative self talk floods back in. But I think you absolutely have to be a be able to find a way to do that. That's really important. And I think it's important on a personal level but also on a much wider scale, if I'm able to advocate for what I feel would be a neurodivergent friendly setup and workplace, whether that be in the media, in T V, in the NHS as an employee,
then hopefully that might benefit someone else. And of course everybody's experience, everybody's autistic experience is different and their needs will be different. Hope hopefully it will it will help employers start to ask the questions and be curious. And I think that's really what what I'm hoping my next sort of um step in my career will be thinking about the NHS and how the NHS
is one of the most autistic, un unfriendly environments to A working as an employee. There's a reason that I've not been able to stay in general practice. d despite deca dedicating twenty years of training. And be as a patient. And I know Catherine you've, you know, recently experienced what it means to be a patient and I too have on a much smaller scale and um
we've got a long way to go. And that's everything, isn't it? Our experience of healthcare, accessing healthcare, whether that be mental health care, physical health care, care for cancer. that really is everything because those are the times when you're at your most vulnerable, you're at your most in need. And um
Yeah, we should be that's when you should be given the support you need and not, you know, feeling worse because of who you are. And um so I feel like there's something in me, I feel like they've got something bubbling away.
Fire of you wanting to do something. And it's at all levels, isn't it? It's it's everybody. It's the person who takes your blood, it's the receptionist. It's the consultant that you see, it's you know, the the nurse who is helping you with the dressing. And it's all these communication that you have with with those kinds of staff when you're in having those kinds of things done. You often encounter
the real difficulties because you're with people who don't understand you and don't see you. So huge piece of work. But it also made me think when you were talking, Helen, about work, because for the three of us We are all self employed, then
And work is not one employer. Work is lots of different organisations, people that we have to interact with in order to do our work. And It's a really hard thing to do, isn't it, when you're having these conversations with all of these different people that you are working for who are not your employer.
And we know the vast majority of autistic people are not in employment. The vast majority are self employed. They've been f almost shoehorned into self employment to try so we can create this world that we need and yet The support for us is It's just not there, is it? No. Is that something you've experienced?
Rydyn ni'n ymwneud â llawer o'r pethau. Mae'n ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r ymwneud â'r hyn. you know, it comes down to the workplaces where I've or the or the projects or the you know, the contracts that I've had, the s the situations where I really thrive in my work and I'm able to deliver. and feel good and feel that real sense of um
Yeah, self confidence and like I'm doing good in the world. Are there times when there has been compassion, there's been empathy and there's been that open, honest, direct and clear communication.
And
Surely everybody's gonna benefit from that. You know, a all workplaces can benefit from that, can't they? And I think the last thing I want to say about workplaces is that for me, health is like my top value, you know, and personally and professionally. Workplaces that really put health first, put the well being of their people they're working with first, because that is absolutely everything, isn't it? It it's absolutely everything. And I think really it's about
leading from the top and leading by example. I've worked in organizations before delivering health and well being services and the people at the top are sending emails at midnight. um, you know, they're working long hours, they're potentially not prioritizing their own health and well being. And I and I really think especially in the NHS I think it's so important that we lead by example. Um
Yeah, and and and that is something that I definitely try and, you know, practice what I preach and take responsibility for. It can't it's not always easy, but that's something I think that employees should be striving to do.
¶ Challenging Autism Stereotypes
Final final question. A myth or a stereotype that you want to undermine, what would yours be?
Oh I'm a thorough stereotype. I think really for me it would be that autism doesn't look a particular type of way. be really open about who in your life could be autistic, who in your world stay open, stay curious, stay open hearted as well. And um Yeah, self disclosure's tricky. And um Yeah, be really open. I think particularly um thinking about me as a dual heritage, black African, white, British, brown person, um I'd never seen anyone like me.
You know, I've uh only in the past six months I've actually spoken to another person who looks similar to me, who has also autistic ADHD. Felly rydyn ni'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd. yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r
Yeah, so for me that's um a a stereotype that I think we still have a way to go. Um, even if I think now to the people in the media who were talking up and doing great work, um I can't really think of anyone.
who look similar to me or is um not not white British. And so, um, for me that's that's a biggie. Um and thinking about my younger self and h and what might have helped me to um accept who I was and be kinder to myself, I think that would have definitely been um a really positive thing to have seen.
Well thank you, Helen. Thank you for coming on and for coming and and sharing so publicly your experience and I hope that this experience gives you what you need to be able to move forwards and and lead perhaps some of this change that needs to happen. So thank you.
Yeah, and for me as well. Thank you so much. It's it's not easy to to talk, you know, openly and in public about this for all the reasons that you've talked about, you know. Um so it but but every one of us that does It just helps, you know, it's another drip in the in in the ocean, isn't it? Of just getting things to change gradually, gradually, gradually. So yeah, thank you.
Thank you.
And being the two smiling faces on the other side of the the call to um yeah, be there. So thank you.
🎵 Music