Nicola Rowan-Brooks and Late Autism Diagnosis at 55

Hear Nicola Rowan-Brooks's story about being diagnosed by Sarah Hendrickx at the age of 55. Nicola shares the impact of her autism diagnosis and what life was like growing up undiagnosed in the UK.

Nicola runs an online business restoring teddy bears. Her website is called Ambrosia Bears.

If you'd like to know more about topics discussed in this episode, check out:

"Girls and Women and Autism: What's the Difference?" [YouTube video] by Sarah Hendrickx

Episode intro and outro music: "Relacrux" by CRUXORIUM (no changes or modifications were made)

All episodes written and produced by Kristen Hovet.

Send in your questions to otherautism@gmail.com

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The views, opinions, and experiences shared by guests on this podcast are their own and do not necessarily reflect those of the host or production team. The content is intended for informational purposes only and should not be taken as medical or professional advice. Please consult with a qualified healthcare provider before making any decisions related to your health, fitness, or wellness. 

Transcript

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Kristen Hovet  
Today I'm speaking with Nicola Rowan Brooks who was recently diagnosed as autistic in the UK. I have to admit that speaking with Nicola had quite an impact on me. While she shared some of her story with me through emails before we even recorded our interview, I didn't know her full story. So when I heard it, it really hit me. Obviously, you can't see it because it's a podcast and I don't record video, but yeah, my eyes were tearing up. I have lots of things I could say right now, but I want to let Nicola tell her story or herself.

Kristen Hovet  
Before we get started, before we get into the interview, I do want to say that this episode is a great reminder, no two autistic people are alike. That seems obvious to probably most of the listeners, but you'd be surprised. I'm also reminded of this nearly every day due to the number of autistic people I come in contact with. But it's important, I think, for listeners to remember, to keep that in mind, especially for those who are new to this space. You can be super familiar with the diagnostic criteria, but no criteria will let you in on who the person is, what their personality is like, or their life experiences and the impact that those experiences had on them. For example, when I spoke to Nicola, she said some things that I resonated with 100% and then other things where we we're total opposites. And interestingly enough, that's the same thing that happens with neurotypicals or non-autistics. We are all individuals. We all have similarities, just like any other human being. And there are things that make us very, very different from one another. So with that said, I'd like to introduce you to my guest for this week. Nicola Rowan Brooks.

Nicola Rowan-Brooks  
My name is Nicola Rowan Brooks, I'm 55 years old, and I live in the UK. I have no family and no friends, but I live with my cat and a load of exotic animals. I don't like to use the medical terminology, but we're forced to use this language, aren't we? I was diagnosed on November the first of last year, after a lifetime of questioning why I was so different. It's still quite new really, I'm still desperately trying to get used to the idea of what it all actually means. It's been a lot of retrospective reconsideration of my entire life, desperately trying to put it into perspective, reframing situations, things that happened, things that I did, that I said, and just trying to make sense of it all.

Kristen Hovet  
And what led you to consider autism?

Nicola Rowan-Brooks  
Oh, I think it was a lifetime, it has been a lifetime journey actually. As a child, I always knew that I was different. I didn't understand what everybody else was doing. I didn't understand social dynamics, friendships, what they were for, how they worked, what I was supposed to do. I was constantly bullied, I suppose because children just pick out somebody that's different and you don't really stand much chance. As a teenager, I absolutely floundered at secondary school. As the social dynamics became more subtle and nuanced, I got left further and further behind. And I just never caught up. At 18, this is when I stopped and I remember asking my adoptive mother, I stood in the living room and I said, What's wrong with me? And I'll never forget this. She made a twisting gesture with her fingers and she looked at me, she said, you've just got something a little bit twisted in your mind. And I thought, Okay, what do I do now? I just left it for years and years. University was an absolute nightmare. I did not understand anything. And I remember just watching everybody as if through a sheet of glass, and I didn't understand what they were doing or how to do what they were doing or why they were doing it. At 24, after I did my master's degree, I thought I've got to try and get a job because I think I was staying in academia because, for me, it felt relatively safe. I didn't want to enter the, air quotes, real world. So I remember filling in this questionnaire and working on this computer just to try and work out what sort of employment would suit me. And I remember taking it to the lady afterwards and she looked at my responses, she said, This is very strange, you need to go and see a psychologist. And then I thought, okay, I was determined to find what was again, air quotes, wrong with me and what was twisted in my head, and I set off on a lifelong hunt. It's been obviously, another 30 years before I found out what it actually was, but I collected a nice collection of misdiagnoses along the way. Everything from bipolar, borderline, clinical depression, C-PTSD, the old chestnuts. And I just kept going, as an adult, I questioned and questioned myself, I saw psychologists, psychiatrists. I was just awarded, as it were, more disorders. 

Nicola Rowan-Brooks  
And then, at the grand old age of 45, I heard somebody mention the word narcissistic personality disorder, they said that they'd got it and I thought, What on earth's this? And I started reading and I thought, Oh no, is this me? You know, this aversion to people, and not understanding what's going on. And for about five years, I studied it almost obsessively. And the positive that came out of it, that I worked out, that my parents were actually narcissists. And then that explained quite a lot about my past and how I was, can't really use the word raised or brought up because I was pretty much left alone, to raise myself. And then at 50, I became obsessive about C-PTSD because it seemed to have an overlap, that narcissism or being in a narcissistic environment when you're growing up, can cause C-PTSD. And I thought, Oh, a lot of these criteria make sense, yes. I've got terrible insomnia, I suffer from nightmares, etc, etc. And then I was going around in a circle C-PTSD, NPD. And then at 53, I have absolutely no idea, it was January the 24th, it was snowing outside, it's 2021. I thought, Oh for heaven's sake, just, I'll take the AQ online, the Baron Cohen one. 36 out of 50, a light-bulb moment, and I thought, Woah, okay. And that was it. Oh, I've got goosebumps just thinking about it! And then for nearly two years, I read, I watched every single YouTube video, I took every single test I could find online. And it just landed. It was as Leslie says in one of your previous interviews, it was the context. It completely made sense. It was the missing piece of the puzzle. Everything in my life made complete and utter sense. And then I finally came across a lady on YouTube, Sarah Hendrickx, an English lady. She is the forefront sort of expert on the female presentation of autism. And I thought, What on earth's this? So I remember obsessively and repeatedly watching every single one of her videos that I could find on YouTube. I think I just remember sitting there crying. I thought, for the first time in over half a century, somebody's actually describing my life. How does she know what it's like to be inside my head or to have lived my life? I'm not quite sure how I ended up on her sites. But I thought, Oh my gosh, Sarah can actually talk to me and, again the dreaded word, assess whether she agreed with my perception of myself, because that's what I was most in need of. I didn't need a clinical diagnosis of autism. I wanted another autistic woman who was my age to say I can see you, and yes, I understand exactly what you're going through. And I think it was within about 12 minutes, she said, You are 100% autistic. And my life just completely stopped at that point. It all went very, very quiet inside. For the three or so months after that, I just sort of sat with it, desperately again, trying to work out what it all meant. 

Nicola Rowan-Brooks  
And I thought, Right, I already knew that I was different. Now it's been given a word. I am autistic. And then I thought, So what do I do with it? So again, I came online. I just wanted to know what I was supposed to do with the information. All I found were loads and loads of videos about how one helps children past diagnosis. The interviews and people talking were usually neurotypical, using horrible language to talk about autistic people. We are deficient, we are disordered, we are disabled, we are objects of pity. And I thought, But that's not me. Am I not autistic? Hold on a moment. I fell onto your channel, and then I thought, So there's the medical model and the social model and these generally neurotypical people are obviously using the medical model to see us as defective human beings. But your site, it is totally different. I found it very positive, I found it very informative, it challenges current myths, I suppose perceptions, and you're female, and you're autistic as well. It was just wonderful to hear somebody who wasn't neurotypical, wasn't pitying, wasn't using pejorative terms to describe us just because we can't make vacuous small talk. I can't stand small talk, I've never been able to do it, and that caused myriad problems obviously, when I was younger. I still can't do it, I still won't do it. And that we are apparently sort of deficient because we don't or won't fit in with the perceived norm, and I thought, But I've never wanted to be like those people out there. And when I've tried, it must have come across as very insincere because I was attempting to do what I thought was the correct thing to do, but it never worked. It sort of backfired in a lot of cases because, I suppose, it didn't come across as genuine.

Kristen Hovet  
I'm sort of tearing up here listening to you. So thank you. Thank you so much. And I love how you've described the internal process that you had. That's really valuable to me to hear as well. So thank you so much. I know you talked about how it made a lot of sense, how your world sort of stood still, and you've deeply processed your quote, unquote, diagnosis. I know I don't like the term either, but it's the term that's still there. What are the predominant feelings that you have after receiving your diagnosis?

Nicola Rowan-Brooks  
Absolute joy. Actually, I think I started crying. I said to Sarah, This is absolute relief and joy. I've spent half a century trying to work out why I am like how I am, why my life has been as it has been. And now I finally have the answer. It's almost as if the floor has become solid and I'm not on quicksand anymore in my life. Since that diagnosis, my life has just turned 180 degrees completely. Absolutely, I feel as if I'm, I was going to say a different person, I'm not a different person, I'm the person I always have been. I can feel the previous belief that I had to fit in just dropping away. I'm slowly shedding anything that doesn't leave me feeling very quiet and very calm inside. I can see now, looking back at the sensation of when I was trying to people please and fit in, it felt very fake. I always felt it was fake then and I didn't like it. Sometimes, I feel it start to rise inside that I need to put on this mask, and I refuse to do it now. I think, No, no, this is me. I'm gonna honor myself for the first time in half a century.

Kristen Hovet  
Have you told anyone else in your life about your diagnosis?

Nicola Rowan-Brooks  
As sad as this sounds, there isn't anybody to tell. As I said, I have no family, no friends. I've actually done this. I'm not looking for sort of pity or anything, it's just the hard, plain facts. I have been, I'm not going to say lonely because I don't understand the concept because I can't miss what I've never had. But I've been alone my entire life. Every single thing I have done, I have done alone. And I'm so proud of myself that this one thing, Who am I? I managed to do it all on my own, no help from anybody. I suppose one could say that my adoptive mother saying, You've just got something twisted in your mind, was the spur. So she started me on my path and I'll always be grateful to her for that. But I never gave up. I never stopped. I was autistically obsessive about finding out why I was different. I have contemplated what might happen if I ever were to meet anybody from my family and just say, I was autistic. I think my adoptive mother would probably just say, No, you're not. She spent her entire, spent my upbringing telling me I was what I believe I was not and that I was not what I believed I was. And I don't think she would be very impressed in the slightest, actually. I think she'd be rather embarrassed and feel that I had let her down once again. She said I was supposed to get married and have children. She said, I thought you'd marry a doctor. She said, You weren't supposed to become a doctor because I've got a PhD. And, like many autistic people, I have got, shall we say, very bizarre skills. And yet I'm totally unemployable. I think I was listening to somebody explaining how autism impacts on one's life and the employment. I honestly, honestly believed my entire life, if somebody is the most qualified person for that job or that position, they should de facto be given that position, very autistic, black and white. I can't tell you how hard I studied. A first class degree in England, I think that's summa cum laude in the States, I have my master's, a PhD, I've published, and I just did my very best. So here we go, I have a PhD, nobody will employ me. I finally learned it's 33% qualifications, 33% your communication skills, and 33% your personality. I only have 33% of the necessaries because I didn't understand how one is supposed to socialize and communicate with others. I suppose I was deemed completely unemployable. That has been hard. I remember our teachers telling us, If you work very hard and get decent qualifications, you'll always be employed. It didn't work out for me, and so I've always felt a little bit betrayed. 

Kristen Hovet  
That's hard, yeah. You mentioned you have your own business. Do you mind talking about that?

Nicola Rowan-Brooks  
I think it was because I tried so often and so long, I've had so many jobs, I suppose like so many autistic people. Everything from, while I was doing my PhD, teaching undergraduate seminars, oh I adored doing that, but it was not for very long, so I didn't have enough time to get into real trouble I suppose. I was also a secondary school teacher, I did private tuition coming further and further out. During part of my journey to discover who or what I was, I fell into yoga, spiritual teachings as well, became a yoga teacher, a Pilates teacher. But I've always been very, very creative since I was a child. I adore making things. And I remember, on one holiday down in Lyme Regis, that's in the south of England, it's absolutely beautiful down there. I went into a shop where teddy bears were made, handmade artists' teddy bears, and I bought one. And I thought, this is gorgeous, and I thought, in might arrogant autistic way, I can do this. I had a go, it was absolutely dreadful, dreadful. I thought, Right, I'll have another go, try it again and again and again. And I thought, Oh this one's alright. So I built a website and it sold, made some more bears, and they all sold and I even then started sending them down to Lyme. And eventually somebody said, I've got this bear that's actually, it's joints don't work, can you fix it please? And I thought, Okay, I'll have a go. So I restored this teddy bear. And it basically went from there. It's only a tiny, tiny, tiny business. It just keeps me you know, sort of the bills paid and be fed. But it means I can stay at home. I don't have to go out there. And my mental health soared, my physical health soared. I still have terrible, terrible problems with the customer service part because I do absolutely everything. I maintain the site, prepare the bear, send out the invoices, interact with potential clients, and I'm constantly messing that up. Always. There isn't a week goes by that I'm not called rude, strange, different, weird, unusual. Even when I'm writing, it comes across that I'm not doing something that I'm supposed to be doing. I adore not having to go out unless I really, really have to, just to post the repairs. 

Kristen Hovet  
I can relate to the different jobs, the changing and trying new things that, you know, you would never expect to try. When I started university myself, I had many interruptions. I could never figure out why. And I guess, and now knowing, looking back, it was burnout, it was autistic burnout. And I initially went in wanting to be a professor. And then I realized getting up in front of those, you know, huge crowds, like every single day of the week, it was just, you know, I could feel myself just crumbling at the thought of it. And now with COVID and changes that have come with that, I watch, like I'm in my master's program now, and a lot of instructors and professors are able to teach online. They don't have to leave their house, and if it was that way then, I might have stayed on that track. But I also just want to say, you have a very gentle quality about you. And I feel like, if you were my professor, you would be amazing. So I just wanted to reflect that back to you.

Nicola Rowan-Brooks  
Oh, thank you very much. I don't think anybody has ever, ever used that adjective about me before. I've never ever been called gentle. It's very funny you say that because when I was teaching at secondary school, it was at a girls school. So they were between, in England, we go to secondary school, age 11. And you can stay there until you're 18 before you go to university. The girls between 11 and 16, they either loved me or they hated me. And when I got on with a class, it was absolutely wonderful. I thoroughly enjoyed teaching. When it did go wrong, when I was teaching A levels, 17 and 18 year olds, just before you go to university, I think I was just way too intense. I was hauled up by the headmistress. She said, You're giving them more work than all the other A level teachers put together, you're expecting too much, you're much too intense. And that's said in an English school, you're not friendly enough. And I thought, I'm here to teach to the very, very best of my ability and that's what I'm doing. And it all after that went rapidly downhill. I was actually fired. I so enjoyed teaching the younger girls, the 13, 14, 15 year olds, and some of their results were absolutely amazing. If I'd been allowed to teach online, I think it might have worked out a lot more successfully. 

Nicola Rowan-Brooks  
And also to jump back, the idea of burnout I think I've only just started to reflect on that, that my whole life, I remember saying, when I was at work, I'm tired, I'm exhausted, just feeling so drained. So I think soul weary doesn't even come close to how I felt from about, I think it was 18 onwards, when I was doing my own A levels, I threw myself into them because of my home life, in part. And then when I actually got to Durham, I just studied and studied and studied. And I did actually have, I'm not sure, I thought it was a breakdown just before my finals in the third year. But I'm not sure if was actually burnout, or if they're one and the same thing. And I've spent my entire life in this state of abject exhaustion. And I think it can take decades to overcome. And I think I've only just started feeling in the past, again, I think few months really, or past couple of years, I think when I realized I was autistic, that a massive weight had been lifted, I suppose, part of it was the why I felt so dreadful all the time. And then it was trying to work out which aspects of the non autistic life that I was living were contributing to this dreadful, dreadful feeling. And I think somebody mentioned, If one lives an autistic life, it'll bring out the best in us. And for me, that's staying home as much as possible. I can go for several days without talking to anybody. And when I do talk to somebody it's to say hello to the postman, or to speak to the lady at the post office, but I don't get, again, this feeling of lonely or just being alone. I don't mind being alone at all. It gives me a sense of absolute peace. And I can feel myself almost expanding, I can just be myself. And the second I have to go outside or go to a supermarket, I can feel myself contract, I get stomachache, I start getting really nervous. And I just can't wait to get back home. And then it's almost as if it knocks me out for the entire day. I thought, I've just been to the shops, just to buy, I don't know, some onions, and I'm absolutely exhausted and I can't do anything else for the rest of day. It's really horrible.

Kristen Hovet  
No, I definitely relate. Would you say it's related to sensory issues?

Nicola Rowan-Brooks  
Definitely. Definitely. I have always had horribly acute hearing. I remember being on holiday somewhere. I was asleep in bed upstairs. And I could hear a very small clock downstairs in the living room, ticking. So I had to go downstairs and take the battery out before I could go to sleep. At night, the slightest sound will wake me up. I've always wondered why I could never stand restaurants. If I'd force myself to go out, and it always was a forcing, I always wanted to go very early in the evening when it was relatively quiet, but the second it hits about 7pm, the noise threshold. I was ready to scream, but I thought, Just stay calm. But I thought it was just me being oversensitive because that's what you called it, oversensitive. I always had a terrible photo sensitivity, constant headaches. The sun in England in the summer is very, very strong. I kept telling my parents, they didn't believe me or just ignored me, so I remember saving up my pocket money to buy some sunglasses when I was a child. I wear them outside now, in the winter, in the summer. I don't step outside even to go and put rubbish in the bin without putting a pair of sunglasses on now, and the change it's made! I wear yellow glasses when I'm on the computer because I didn't realize that the blue light actually also gives me dreadful headaches. And then I started to think, Well, what about touch? There are certain textures I can't stand in my mouth. I didn't realize why things as bizarre as dried mangoes, woody swede, woody long beans make me retch and gag. Very strong, unpleasant smells can, and running a teddy bear business when I have to wash and restuff toys that people have not washed or cleaned for 25 years, the smell is, let me tell you, pretty horrific. And I have actually, shall we say, vomited several times because of the smell. Touch as well, I have to cut out all the labels in my clothes. I can't stand high necks or polo necks. Waistbands, I've always since a child, I didn't understand why I couldn't wear waistbands on my waist, I have to have very, very low trousers, low underwear. Because I can't stand the tension or sensation of feeling trapped and all my clothes are very, very loose. Once one has that autistic label, or sorry, I don't like that term either, or just the identification of I am autistic, everything starts to make sense, why I can't bear loud noises, why I need to wear sunglasses all the time, why my clothes are so sort of loose and baggy. It's lovely knowing why. Again, it's that context. It's so important.

Kristen Hovet  
I read somewhere and I can't remember where it was, I think it was an anthropological study or research group that wrote this paper, because autism appears to be either increasing or staying the same over human evolution. And they believe that in the past, like way a long time ago, autistic people used to keep the group safe, their own tribes or their people safe by being able to hear the enemies approaching or the animals because they have that super acute hearing, and even looking out over an expanse and being able to see exactly what's different or wrong. Anyone else couldn't see it. And now, in our environment today, it's actually challenging because we continue to have that quality, but it's now seen as a weakness, or because of our surroundings, with fluorescent lights and all the sound, it's too much.

Nicola Rowan-Brooks  
That is absolutely fascinating, actually, because I started looking into, okay, there are autistic people. It is a neurological difference or development. It is not a deficiency. It is not a disability. It is not a disorder. It is, as you said, an evolutionary necessity, I really do believe that. Was it Temple Grandin that said, If there weren't any autistic people, the cave people would still have just been yakking around the fire. And I thought, That is so true! I bet it was an autistic person that was sitting in a cave somewhere thinking, I wonder what happens if I chip away at this rock? And look, here's a knife! And as you said, there has to be some natural biological use for this neurological difference in evolutionary terms. Otherwise, what is the point of it? Again, this attention to detail, the pattern spotting, the pattern recognition, I think that is just so vital. And again, I thought, Okay, so let's get some proof of this. And then looking back at the great inventions over time, painters, Leonardo da Vinci, the writers, there's somebody in England called Thomas Hardy, my PhD specialism, they were autistic. And I thought, That's another reason why I identified with Hardy so much. There was just something about his novels. I just, I was hooked the second I started reading. John Keats is another English poet, I thought I bet he was. Had a look, yes, another one. Of course, Nikola Tesla, he's autistic. These people, look at what they gave to the development of humanity! Autism is there for a very, very good reason. I think there's just, I suppose, relatively so few of us, any of our abilities come across as annoyances or threats. I always remember being told to do your very, very best. So I did my very, very best in anything I did, anything. And I would always achieve it in half the time, twice as good as anybody else. And then I'll be told, You're making people feel very uncomfortable the way you're doing this. And I thought, So now, my abilities are seen as deficiencies. I remember when I was studying for yoga, it was just one of these things, I was researching it to the nth degree as one does when one is autistic. And I found a lot of their material was actually incorrect. So I was, well I thought I was helpfully saying, Do you realize that this is incorrect? If you'd like me to rewrite the course for you, I can do that for you. And I was told, If you keep questioning the course, changing things, and over-researching, we're going to fail you because you're making people feel uncomfortable. And I thought, Okay, I'm the common denominator, and I have been the common denominator throughout my entire life when anybody has felt uncomfortable. I think that was another reason that I thought, So I am the problem here. It is me. Everybody else is fine until I come into the picture, and complete a PhD in half the time, or try and rewrite their courses, or do something else a lot better, a lot more quickly than I'm expected to. But again, I think this speed, I've heard this, Sarah Hendrickx, she said as well, I'm so fast, I'm so fast at doing things. I thought, That's another quality of how my autism presents that I do things now. I cannot see the point of procrastinating, putting off for a day, a week, even five minutes. I remember saying to people, I will do this now for you and I would get up and I would do it. And then they would say, But I didn't think you meant right now, again, but that was another miscommunication. I always say what I mean. And I always mean what I say, which is another thing that seems to cause problems with neurotypical people that they say one thing, and they apparently mean something completely different, but I haven't picked up the nuance, or I was supposed to pick up what they really meant. And that has caused so many problems because I have taken people literally, I have said things and then followed through. And they said, But we didn't think you meant it. And I've been left totally and utterly dumbfounded, at 55 I still don't understand what's going on out there.

Kristen Hovet  
One thing I've noticed, it's been a few years for me now since my diagnosis, and I've met some people who also either suspect they're autistic, or they're in the process of getting diagnosed, or they have been diagnosed, and realizing that I've been around these people for several years and didn't know because, and they didn't know that I'm autistic because we're all masking and all putting this tremendous pressure on ourselves to be a certain way. So you know, to me, they all seem neurotypical and then to find all these people who are actually autistic, I think the numbers are higher, and we're all just camouflaging ourselves even from each other sometimes.

Nicola Rowan-Brooks  
I've seen masking and camouflaging. I think it was a neurotypical person that said that, camouflaging, if you autistic people accept this term, it makes you sound covert, suspicious. And I thought, Gosh, of course, as if we're trying to hide and get in there sneakily. I said, No, it's nothing like that at all. Neurotypical people and neurodiverse people, we interact in totally different ways. And for an autistic person to come into your world, we have to try and ape or adopt your mannerisms, your speech patterns, the entire way in which you interact, we have to try and take that literally on as a piece of clothing. It's absolutely draining. It's horrible. And, as you said, we're all trying to do this with each other. And I suppose during my life, I must have met other autistic people that thought I was neurotypical. Personally, I never thought I passed or succeeded in any way, shape, or form. I think I always knew, deep down, that what I was doing wasn't sincere or genuine. I wasn't deliberately trying to deceive anybody. But I think I was almost too over the top. But I think I came across as too enthusiastic, too verbose, I would dominate the conversation, and to be honest, hysterical, thinking, I've got to try and keep this act up. And then I would get home and totally, totally just drop. I've just stopped doing that completely and utterly. Now, looking back, I don't know why I did it now when it never worked. I think I was just so desperate, beyond desperate to try and make, again, I'm not trying to sound sad or anything like that, but just trying to make a connection with another human being. I've never actually forged a connection with another person on this planet. Animals, no problem. Cats particularly, I've got my little cat. There's something between us. It's very, very easy to communicate with animals, I can instinctively feel what she needs, what she wants. Not necessarily what she's thinking. But there's an ease with animals that I've never ever, ever felt with people. The second a person approaches, I can feel myself tighten and tense because I don't know. It's the uncertainty, what I'm supposed to do. 

Nicola Rowan-Brooks  
Even something as simple as this dreaded eye contact. I remember as a child being told, You must look at people when you're talking to them. It's very rude when you don't because I don't think I did. So I thought okay, I mustn't be rude. So I remember staring at people in the eyes, never breaking, never blinking. And then I was told, You know, you mustn't keep staring. It's very rude. It makes people feel uncomfortable. I thought, I can't win. What do I do? I thought, I know, I will look for four, 1 2 3 4. And I will look away for four. And I will be counting in my head literally four on, four off. But I would spend so long counting, or be concentrating, I'd lose what they were saying. And then if there were two or three people, I would literally go in a row counting four, four, four, until I just completely lost the conversation. So I must have looked incredibly strange because I think it was clear that I was nodding my head for 1 2 3 4. But I also found myself lip reading. Rather than looking at somebody's eyes when I'm talking to them, I seem to watch their mouth. And this was another thing. While I was researching all of this, it was other women, another woman actually said that she did the eye contact counting and that she lipread. I thought, Oh my gosh, this is me. Okay, this is another little stamp of yes, you are autistic, just these different ways of interacting with people, but apparently looking at somebody's mouth makes them feel uncomfortable as well. And I've been told, I think I just make people feel uncomfortable. And at least I know why now, I accept that people are going to feel uncomfortable around me. And in a way, it's nice having the autism validated constantly when people are uncomfortable. I suppose it would be nice if, at some point, I could have an interesting conversation with a person. Obviously, with yourself, it's fine. But just a normal conversation. I think I leap in too quickly to the deep end with things. I don't want to talk about the weather and, you know, get straight to philosophy, the meaning of life or whatever. But people don't want to do that. They apparently you're supposed to paddle in the shallow end with all the small talk. And, after a while, you might be permitted or if that gives you a license to go into the deep end. But I don't have the time to mess around. I just want to get straight into things.

Kristen Hovet  
Definitely same. And when you were talking about the aping or mimicking, I remember reading in biology books, that even humans mimic each other, right? So I thought, It's normal that I'm having to do this. It wasn't even totally conscious, the extent of aping and mimicking other people. And I realized it's just, it's definitely along some kind of spectrum, like yes, all humans do that. But at some point, they don't have to think about it. And they don't have to try. And then for me, it's a constant thing that I'm doing.

Nicola Rowan-Brooks  
Yes, I totally, totally agree with that. It seems to be that with the neurotypical population, as you said, that is so important. It is instinctive. I actually bought a body language book. I saw it as a manual that might give me a clue as to how I was supposed to interact because it was not instinctive at all. I was absolutely fascinated. It explained what it means when people hold their arms and how they stand. And it could mean this, it could mean that, and I remember just standing there at school, just watching people thinking, Oh, I think I know what that means! So if I stand like this, will this give a certain signal? So of course I tried it, and sometimes it misfired, obviously, because it wasn't instinctive what I was doing, I was deliberately and consciously trying to adopt a certain posture to elicit a certain response or to appear in a certain way. It just never worked. I started to delve into psychology to try and understand how humans think. I mean, that's a bizarre way, it's like saying, I'm not human. But I didn't understand how everybody else was thinking because I clearly wasn't thinking in the same way. I obviously didn't understand why at the time.

Kristen Hovet  
I recently figured out that a lot of females, specifically who are autistic and not diagnosed, go into psychology. And that was the same kind of route I took, I did literature and then I went, I veered into psychology, and now I'm in health and research. But definitely, there's that thing about psychology, it feels like it's going to unlock the mystery of everyone around me.

Nicola Rowan-Brooks  
I think our minds, our brains, seem to work very, very differently. I have actually managed to find an online autistic group and we chat a little bit on a Sunday morning. And it is so easy! I don't know why. Just other autistic people just get straight in, start talking. When I say, Oh does anybody else think this? I get a little load of nods, smiles, waving hands, and it's so nice that, for the first time again, in my life, for people to say, Oh, yes, yes, yes. And then sort of discussing how we might deal with those things. I think that was another thing that really, really helped that I was looking for, after the diagnosis, ways of sort of helping myself a little bit more with my autistic traits. Just simple things, like I always found myself getting very, very overwhelmed by something as simple as literally cooking a meal. Because I could see the whole thing and all the little bits that needed doing and I just didn't know where to start. So I thought, right, Literally just make a list. All the things that I need to get done in a day, I'll just feel completely overwhelmed and try and start doing everything at once. And I thought, No, make a list and then things that I need to do, things that I would like to do, somebody suggested splitting them up, and then I literally just tick them off. Try and keep myself calm. It has helped so much. It's just all these little things. Again, eye are sore when I go out, well wear glasses. My eyes are sore when I'm on the computer, wear glasses. So just try and create an autistic life. And that's helping as well.

Kristen Hovet  
Do you wish you'd been diagnosed as a child?

Nicola Rowan-Brooks  
Now this is a fascinating one. I listened to Ciara's podcast with yourself and before I listened to that, I thought, Perhaps, perhaps it would have been a good idea. After I listened, I thought, I am so glad I wasn't. I was born in 1967. So if I had been diagnosed, and with the sort of people that my adoptive parents were, I dread to think what would have happened to me. If it had been acknowledged, they probably would have subjected me to the electric shock treatment. My parents were physically very heavy, shall we say? Anyway, so they would not have been averse to the beatings, anything to make me respectable and fit in. If there had been any sort of support available, I think my adoptive mother might have taken me once or twice, and then said, This is very inconvenient, you don't need this, you're not really autistic, let's, let's just forget about it, you're just a little bit different. If there had been money involved, she would have been there like a shot. But I don't think it would have been seen as anything other than a deficiency, a disorder, a disability, that I was letting my family down. So I think I'm pretty glad at the moment, from what I have heard, what I've seen, that I wasn't diagnosed, because I don't think I would have received any help. And it would definitely have been used as a whipping stick. I think part of the pride in myself at the moment is that I did it all myself, I didn't rely on anybody else to say, You should go for an autism assessment. I came to that conclusion myself. I think that gives me a sense of real joy and achievement, actually. If my parents had been parents, and they had taken me along for an assessment, with love and joy in their hearts, oh I do wonder how different my life would have been. However, I think it's the therapists that children are exposed to. I'm not sure if I'm correct here at all, I'm probably very, very wrong. But it just seems just a way of them teaching children, autistic children, not to be autistic. If any sort of intervention is to encourage the autistic traits, this child doesn't speak, but they're going for the instruments. Oh, my gosh, let's just encourage the musical aspects. That would have been absolutely wonderful. I would have loved to have done homeschooling. I taught myself anyway, pretty much. I do remember at university, third year, I didn't go to lectures, I just taught myself. So certain things would have been absolutely wonderful. It would have been nice not being forced to make friends, you know, You have to go out there and make friends and literally being pushed out the front door. I remember at 24, I was in my bedroom studying for my master's, and my adoptive mother said, You're not going to meet anybody if you stay in your room. You've got to go outside and meet people! And I thought, But I don't want to, I love it here. I'm safe in my room, and I've got my books. And that was all I wanted. Again, if they had been nice parents, and if they had understood my needs, my needs, not what a neurotypical person wants for an autistic person, but what the autistic person wants for themselves. And then therapists listen to that. Oh, I do wonder!

Kristen Hovet  
I like to focus on the positives, as you mentioned. So I'm really curious to know the three autistic traits that you love the most.

Nicola Rowan-Brooks  
Hyperfocus in myself because I think that has given me my ability to get things done in half the time. Actually, Sarah Hendrickx, in my report, did say that everything I've achieved is because I'm autistic. And I think of my achievements. I've actually taught myself to read ancient Greek, got this PhD, I taught myself to ride a motorbike, I've got a motorbike. I've actually got a black belt in karate, I did it in half the time. So that hyperfocus, the ability to see what's necessary and to go for it 110% and to apply and learn the skills. I would never ever, ever give any of that up. So if somebody offered me a pill and said, You can cure this. No, no, no, no, no, no, no way! I love my creativity. I love being able to pick up some material and some joints and to make a teddy bear or to get some mandala dotting tools and to create some beautiful pictures on some stones. I just love making things with my hands. So that creativity, I think that's another thing. I love my ability to have a go at absolutely anything. That curiosity of being autistic. Well, I don't know if this will work, but I'm going to have a go. I tried to teach myself to play the violin. It was, I'm no Vanessa Mae, I had a go. But again, it's just that curiosity about everything and just learning. I love how the autism presents in myself that I'm just curious. I've actually got snakes. I've got tarantulas. It's just this curiosity about everything. I will say that the sad thing about it is that I never shared, shared it with anybody. It would have been so nice just to do some of these things with somebody. I don't really understand how interactions or friendships work, but I do see people outside doing things together, laughing with each other, and I just wonder what that would be like. I love the fact that sometimes my passions will lead me on to another passion. Because I've got a motorbike, I just decided to head down this road. I don't know why. And I saw a falconry center. And that's now given me another one of my greatest pleasures. My favorite way of spending an afternoon is to go to the falconry center, there's always a flying display, just to watch the birds of prey. Absolutely fascinating. I love doing that.

Kristen Hovet  
As you were speaking, it made me think of what Leslie was saying in my interview with her about her imagination and her fantasy world. Did you kind of have something similar? Or do you still have something similar?

Nicola Rowan-Brooks  
Again, that's really, really strange that you say that. As a child, I had an absolutely avid imagination. I remember lying in bed at night and my adoptive sister, she wasn't my biological sister, but they'd adopted her as well, we would spend hours telling a story about, I had a dog called Bobby. And we made up stories about his adventures with his imaginary cat friend, Rascal. And this epic, it must have gone on for years and years and years, every night for a couple of hours, we'd just sit there just telling this story, just making it up as we went along. I always remember playing imaginary games with my sister and my brother. When I was tutoring younger children how to read, for some reason, I always managed to get their imaginations. I don't know how. Perhaps it's because I'm slightly childish. No, I think I definitely am very, very childish myself. And I think it did help with teaching as well. Being an English teacher, trying to encourage the imaginative aspects of writing. Just literally close your eyes. Now think, use your mind. And I remember one little girl. Just imagine we were both mermaids living under the water, down to a little castle at the bottom of the sea. I can see it in my head now. And then she opened her eyes and she said, What was that? Can we do it again? And I thought, Has she never used her imagination, the power in one's head? At night, if I can't sleep, I will just create a world in my head, or somewhere I've been that I really enjoyed, and I will just walk through it again and again and again, just reliving it in my mind.

Kristen Hovet  
Yeah, super vivid, right? 

Nicola Rowan-Brooks  
Yes!

Kristen Hovet  
I remember when I was first researching autism, the couple of things that were hurdles for me in applying it to myself, that was one of them, because I kept reading, Autistic people don't have imagination. Well, that's one of the like, main traits of myself, so that's not me! And then the other one was lacks empathy, autistic people lack empathy. Well, I have empathy in spades, it just maybe looks different. Or, when I'm feeling empathy for someone, I don't express myself in that moment. I kind of like, just stop, everything just stops. And it's almost like I'm just feeling what they're feeling. But to them, it might look like I'm not feeling anything at all.

Nicola Rowan-Brooks  
Now, that's very, very interesting. I think this is one aspect of autism where I perhaps present the male neurotype. I've listened to lots of autistic women talking about empathetic feelings. And that is one thing, I'm afraid, I do not have. I cannot, under any circumstances, put myself into somebody else's shoes if I have not experienced that exact thing. It's funny, Sarah Hendrickx pulled up this problem about my business. She said, You're restoring teddy bears, your site is all fluffy and pink, you come across on your site as very, very friendly. And yet, when people obviously approach me, I'm way too matter of fact. There's a tendency for people to, I don't know why, give me their life stories or tell me about their dead father or the baby they've just had, or the history of this bear. And I'll be completely honest, I don't care. I can't feel anything. I'm thinking, I want to restore your bear. This is irrelevant information. I don't need to know this. Why are you telling me? I know I am supposed to say, Oh, I'm dreadfully sorry. But I'm not. I refuse to lie. I thought, I will be truthful with them. Not by saying I don't care. But I will not lie to them. I cannot do that anymore. And it exhausts me because it's another masking thing that I refuse to do now. So I will just be very polite, and I will just direct everything to the bear until they hopefully get the message. I've lost a few people because I haven't entered into the empathetic, emotive side of things. I can't do it. I've never been very good at it. I know a couple of times dreadful things have happened outside, and I've just stood there with a blank face and everybody else is running around screaming. Actually, this reminds me of my very decided lack of empathy. When I was a teacher, it was believed a very important essay had gone missing from a girl that needed to submit it to the board. And I was the teacher. And the rest of the English department were literally running round hysterical. And I remember just standing there very, very still and very, very quiet. Within 10 minutes, I was hauled down to the headmistress. Why are you not upset? Why are you not hysterical? Why do you not seem to care? And I said, Actually, I do care, but I know it's not lost. I'm not gonna put on this show of pretending I'm worried because I will sort this out. Within 15 minutes, I thought, I know where this essay is. It was in a filing cabinet in my room. But I think that was just another thing that I have always been told I'm very cold, standoffish. And I thought, Yes, that's true, I am. I don't know if that's English reserve or just because I am autistic. Most people probably would find me very, very cold. And I think that is possibly one of the male traits I seem to have acquired.

Kristen Hovet  
I think I have that, too, with a lot of people, especially meeting them at first, but it's more because I'm hyper aware of any effect I might have on them. So I'm trying to control myself.

Nicola Rowan-Brooks  
That's very, very interesting as well. This was a problem throughout my entire life. My adoptive mother taught me to believe categorically that I was 100% responsible for other people's feelings. As a child, I can't tell you how much I did believe this, that if mummy was unhappy, it was up to me as a child to make mommy happy because it was my fault. And she did actually lead me to believe this. I do remember doing something for her once. She said, Why did you do that? I said, I did it to make you happy. She said, Well, it didn't work. I thought, Well, that's my fault. Subsequently, I spent the rest of my life believing it was up to me to make people happy. If they were unhappy, it was my fault. If they were angry, it was my fault. I think it was while I was looking at narcissistic personality disorder and C-PTSD, I suddenly realized, Hold on a minute, how can I control somebody else's feelings? I can't. I can't get inside their head. Emotions come from inside the person. If I become angry or upset from what somebody else says or does, it's not their fault. The trigger was already within me. And it is up to me to control my own feelings. So personally, I do not agree that I'm responsible for anybody else's feelings in the slightest. As long as I am respectful, polite, calm, do not deliberately, I've never deliberately gone out to harm or hurt anybody. But I know I have inadvertently made people very upset and very angry. But I do not take any responsibility for that if I have not been rude or aggressive, and I have just answered a question, which sometimes seems to be enough to set people off. Again, maybe that's another male trait, I don't know, that I've picked up, but that has been like a massive weight I've dropped as well. I'm only responsible for my feelings, my behavior. If I get upset or angry? Well, the trigger's in me. Nobody else can get inside my head and fiddle with my emotions.

Kristen Hovet  
I know that in my head. It's just these ingrained behaviors that are so hard to get out of me, basically. So definitely, I agree. It's so hard in real life, though.

Nicola Rowan-Brooks  
I think that's just it, it was for me before. But now, it just seems that this diagnosis has changed, and, again, I don't think it's changed me. I think it's stripped away the fake me. I just want to be me as hard as I possibly can. And I've found her. And I'm not giving her up to please anybody else. I will be polite and I will be respectful, but I'm not going any further than that. If it doesn't make me feel calm and quiet inside, I think I've spent too long trying to please other people, and it not working anyway to continue doing that. 

Kristen Hovet  
Yeah. I love that. Thank you. What message do you have for others who are just starting their journey towards autism diagnosis?

Nicola Rowan-Brooks  
Oh gosh, I knew you'd ask this. I will not give any advice because I don't believe in giving advice because what is right for me might not be right for anybody else. So perhaps that can be the advice. Do what is right for you. Just for once, put yourself first and feel your way along your path. I think everybody's journey is very, very different. We all seem to think that everybody else has the answer about us. We're the only people that know ourselves. Only you know you. So trust yourself and follow your path if you want the answer to your question.

Kristen Hovet  
Thank you so much. I've really enjoyed hearing your story and thank you again for emailing me and putting yourself out there. I think it's gonna resonate with a lot of people.

Nicola Rowan-Brooks  
Thank you so much for your podcast. If I hadn't found you, I would think I would have been at a bit of a loss actually, but you just keep doing what you're doing because I'm an avid listener and I can't wait for your next one.

Kristen Hovet  
That's all I have for you today. Thank you so much for being here. Until next time, bye.