On and Off The Spectrum
How do families react, respond and reorganize after receiving a potentially life altering physical or mental health diagnosis, either for themselves or for someone they love? Dr. Esther Hess and Dr. Ann Kirsch, two experienced and well-known psychotherapists offer strategies, guidance and realistic hope through some of the toughest times that families can face.
On and Off The Spectrum
Overcoming Cultural Definitions of Autism Spectrum Disorder
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Drs. Hess and Kirsch sat down with Khushi Khandelwal to discuss her experiences of receiving a diagnosis of ADHD in India and how that diagnosis and communal expectation change when she moved to the UK and received the additional diagnosis of autism spectrum disorder.
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Music
Composer / Writer / Author: ROSSANO GENTILI - SIAE IPI: 161539866
So good morning and good evening, everyone. And again, we always give this uh continental hello when we are talking to special guests from around the world. And I'm Dr. S. D. Hess. And I'm Dr.
SPEAKER_01Ann Kirsch, and we welcome you to our podcast.
SPEAKER_03It's on and off the spectrum. And tonight, today, this morning, as it were, depending on where in the world you're listening, this is a wonderful guest. We have Kushi Kandewall. And I hope I pronounced that correctly. I'm very happy. And Kushi has an extremely interesting story to share with us that uh you were diagnosed with ADHD back in India, and maybe you'll share with us where, because I say India is a very large, large country, and and exactly if and that if that made a difference necessarily where you where you got your diagnosis. And then somewhat of a culture shock, you or you move to the UK, and how culture impacts both the diagnosis and the personal definition of self in the context of how you have to operate in the world. And I think that's a really important uh piece to share. And of course, being a woman diagnosed with both ADHD and eventually autism. So please, Kushi, share with us your story.
SPEAKER_00Yes. First of all, thanks for having me. Uh yeah, it's always an exciting opportunity when you get to speak about your experience and how that can impact other people in any small way if possible. Um yeah, so you're you're quite right. So I've studied psychology and I'd studied my master's of psychology in India, and I guess I always kind of knew that I was different to my peers, I was different to my friends, you know. Um in school, I I would make a lot of friends, but they wouldn't stick. Nothing stuck, and um it's only in hindsight I realize why that was, but at the time I didn't know what was going on, and I so I just thought I was different. And uh every once in a while, not not so often, um, I was maybe told, you know, I'm overbearing or dominating and so on and so forth. And um, and then life happened. Um, I you know, I I graduated well, um, I got good marks in school, and then I decided to move to the UK. Wanted to work in the charity sector to do something good for people and you know get a different experience in life as well at the same time.
SPEAKER_03And I'm gonna interrupt for one moment. How old were you when you got your diagnosis of ADHD? Because in the United States, you have to to get the diagnosis, it has had to have happened in terms of being either difficulty with hyperactivity or inattention or both before the age of seven in a couple of places. And then also the later on you would share that in Britain you you would get a uh autism diagnosis. So I just want to give a time frame also for our audience to know.
SPEAKER_00Yeah, definitely. So I didn't have a word for my brain until I think I was 19 or something. Um it was AH in the first place, yes. Wow, and and I wasn't it wasn't a diagnosis in the actual sense, the it was it was a favor um from someone that I used to know, and they said, you know, that there's something to this. So and I was studying psychology at the time, um, and I was like, okay, yeah, whatever. I and I didn't think too much of it because it wasn't in college anymore, it wasn't bothering me that much because I I knew where I wanted to be, I knew that I had to study and you know I had to achieve these things, and I was very focused. Um, and surely there were things that are happening in my personal life, you know, relationships and uh friendship fallouts and all that was still going. Uh, and then I moved to the UK, and I was once I graduated from my second master's, which was in international relations, I was looking for jobs, obviously, and uh something about the work culture here I was in complete shock about. It was so suddenly I was very loud, I was difficult to manage, I was not the ideal employee that you're looking for. Yes, in the world. Yes, and in the way I mean in in most in most polite ways, because we are in the UK, you know. And um, and also there are so many laws that protect neurodivergence in many ways. Now, whether that actually um helps people when it comes to it, I don't know. But and suddenly like I found myself lost. And this is, you know, I've I mean, I I was well educated, so I didn't have a reason to think that I should like I'm not I don't belong where I am, or I don't deserve to have this job, this ex-specific job, because I know that I was capable of doing the job. Um I just wasn't capable maybe of the politics, the office politics of you know having to be nice to people, having to not speak up when you see something slightly wrong, and especially for other people as well. And that got me in a lot of problems, and it that it made me think about how much freedom actually I had back in India, because I did have a job in India that lasted three and a half years, and that is one of the longest jobs I've had so far.
SPEAKER_01So there's something to that, and I culturally this was a whole different story. It was completely you didn't have weren't told these things accepted more for who you actually were, how you presented yourself, and then you move to us to a place where people are more buttoned up.
SPEAKER_00Yeah. And what's interesting in this contrast, though, is that the UK is far more advanced in thinking about these things. They they know about ADHD, they know about autism, they talk about it. There are there are plethora of charities that that are doing some amazing work. And even the you know, the children here, not maybe not really young children, but you know, teenagers know about it as well. So what was shocking to me was that I come from a country, and I uh actually I will correct myself. Uh I am from India, but I don't speak for India. It's a massive country with a massive divide in education and privilege and access. So I will speak from my exactly.
SPEAKER_03Where were you in India and what um in what level of privilege or not did you exist? And why did that make a difference in terms of how you felt about yourself and the AEH diagnosis and so forth?
SPEAKER_00Yeah. Um, so I come from the north, northern part of India, Rajasthan is a state in India, um, where I wouldn't say necessarily mental health and learning difficulties are very much spoken about, they're not discussed in a day-to-day. You'd probably be um looked at in a very different way if they knew that you were different. So people are going to try to mask, people are, families are going to try to hide, and it will become something that you're ashamed of in the in the you know in the best way possible. Yeah.
SPEAKER_01And um there's a lot of masking that goes on around the world, and especially with women. Because we have a different standard that we're held to, no matter how advanced the culture.
SPEAKER_00Yes. And women are supposed to be calm, collected, and you know, together. And a lot of hyperactivity with ADHD is the complete opposite of that, the ideal woman. Uh but I was lucky enough though to be um in a girl's school. They were way ahead of their time. That was, I think, one of the first girls' schools in India uh back when, and very progressive thinking. They wanted their girls to do whatever they could. They were playing all sorts of games, and you could study all sorts of subjects and all that. And um, so I got into psychology there, and you know, this is where I guess I get my kind of the ability to be bold and the ability to kind of speak up, combined with my ADHD, you know, obviously. Yeah. And but I was never really ever told that I was too loud or that I am too much, or that I need to dial down, tone down a little bit to fit in. You know, I I was respected for my opinions, for my views, for for the kind of loyalty that I can bring to the table if I'm working for for you as an employer, you know. Um, and that was just different here because they don't care about all of this. As long as the job gets done and you keep shut, it's that's all that matters. Talk about culture shock.
SPEAKER_01Yeah. Did this all did this hit you all at once? No, actually. What's that story?
SPEAKER_00So um I was in a job actually, and I can't give specifics, but uh it was smallest things like so. Right now we're in a meeting, right? And I'll be in meetings a lot where people are talking at you, not necessarily that you are talking or that you are doing anything. So for me to be able to concentrate, my brain works in a way that I can't necessarily look at the screen for the whole time. I have to be like moving my mouse around or like scribbling with my pen or pencil or whatever, and that's just how I can pay attention. And that became that was the smallest thing that came up in one of my performance reviews or one-to-ones or whatever you have. I don't know what you have in America, but that came up as such a big problem, and that problem started an avalanche of problems, and and eventually I wasn't there anymore. And that was shocking. That was just a complete, I I did not have, I still don't have words to explain why and how that rollballed into something that I I can't explain. Um, and that is where my actual journey started. I thought about, well, why is it that you know, uh, 10 other people can look at the screen and they can listen to this boring uh meeting and look at the person's eyes or the in the camera 100% time, and I can't. And I am also lucky. Sorry.
SPEAKER_03No, I said so. You had the smarts to begin to sort of question your own abilities. Not necessarily that this was some sort of um fault in your character, but there must be something else going on if you compare yourself to others. Why can they do something that I cannot? And it's fascinating to me because here you are already in your 20s, and you'd had a lifetime of sort of comparing yourself in school and whatnot, and I don't hear that that was an issue in India, but in the UK where the demand was different, the cultural um understanding was different, and the messaging was different, that you had you were suddenly aware, oh my goodness, I am quite different. My brain operates differently than nine other of my of uh of my peers. That's that's so that's so interesting. I'm I'm I'm complimenting your sense of self already going from India to the UK that you were strong enough and hadn't been criticized because especially with young girls, it takes a long time for often or for women to get diagnosed on the spectrum, regardless. And by the time they get into their 20s, they've had a pretty punishing kind of existence with a lot of press and a lot of critique and a lot of self-doubt. And I don't hear that from you as you describe that experience, you know, in in the workplace.
SPEAKER_01But I thought it was there. It was there, and yes, and I suspect that when you weren't looking directly at the camera, yeah, it was perceived as disrespectful, yeah, or not not paying attention.
SPEAKER_00That is a bigger problem, isn't it?
SPEAKER_01Exactly. And so a lot of assumptions were made about who you were and what you were doing, and that started the ball rolling.
SPEAKER_00Yes, and I didn't, and and unfortunately at the time I did not have the words to explain why I am like this. And no, you know, there's an aspect of confidence that both the combination of autism and ADHD bring me. But you're right, there is a lot of self-doubt, there is a lot of questioning because every friendship fallout I had, and this is since ever since I can remember, as young as I was, um I remember questioning and crying about why I can't fit in. But it was never uh, I guess there was something that I didn't do, is I didn't really um question my behavior a lot, but I always questioned why this happened, and I just didn't have an answer. And suddenly here now I I have a British partner who's obviously comparing to myself, would have known more than more than I knew when I was a kid about autism, about the spectrum, and about how there are different ways of how people's brains work and operate in the actual real life. And he was also every once in a while, you know, he'd bring to he'd bring it up to me to say, you know, there's something different about you. And he never he never said it in a negative way necessarily, he just said that there's something that makes you quite unique. And and obviously, because I I have studied psychology, and as much as I hate the word abnormal psychology, I did study that. And you you get taught about ADHD and autism and all other different disorders that they classify them as.
SPEAKER_02That's for assure me.
SPEAKER_00Yes, yeah, and um, but then I started to question myself a little bit more and I started reading, and I I went back to my studies and thinking about all the different like I really did in retrospect, like in retrospect, I went through all my life situations, all the big issues, all the small issues, and how they connected to one another. And I I came to the conclusion that actually I do, in fact, have ADHD, even before a doctor he told me. And that's when I realized I need protection. I need protection to be able to hold on to a job here because I'm going to be put under a microscope and I'm going to have a lot of negative experiences working with people who may not be as different as I am.
SPEAKER_01Explain to our listeners, our viewers, what you mean by I need protection? Because that's a very um unusual in America and provocative way to say, I understand what you mean, but what do you mean?
SPEAKER_00Yeah. So, you know, in the UK we have quite tight laws around disability discrimination and equality act that the employees have to follow, and so on and so forth. But there are a lot of work around these laws. Okay, so it's like, and I'm a woman of color, don't forget as well. So there's always that aspect of I have to question, you know, is this happening because I am a person of color, a woman of color, or is this because I am on the spectrum? So, and both those laws, you don't ever get a guideline of this is what racism is, or this is what disability discrimination is. You kind of have to find out in that, living that, that maybe this is wrong, you know, maybe this isn't quite the way that I should be treated. And so when I say protection, I mean I need to read the law from top to down and understand every aspect of this because I'd experienced something in the past and I know that if I'd known this back then, things would have probably gone a bit differently.
SPEAKER_01And I just like meddling with your papers while you're yes. Yes, and a myriad of things.
SPEAKER_00Yeah, and and even though in the UK you don't really need an official diagnosis to be treated equally, um it's it's a good way to it's a good way to protect yourself. Because if it, you know, I'm not saying that it will always come to a court case or you know, whatever. Uh, but if it does, then you better have everything, your ducks in the room, yeah.
SPEAKER_03And but you were sorry, interrupt you for a second. I just want to compliment you that you had an awareness of the law, that you were smart enough and knew that you could find advocates for you, whether it was discrimination in regards to a woman of color, whether it was being a woman, whether it's about a disability. And I think universally, so many people, but particularly women, do not understand their rights. I am often impressed and saddened and shocked, but ultimately grateful if I now go out. I've seen it actually throughout the world. If I go into a woman's toilet in an airport, I see in the b in the stall a signage that says, if you are feeling unsafe, you know, they're talking about trafficking women and that sort of thing. Here is someone you reach out to, here's a phone number, and they have a variety of languages and so forth. And I think that's relatively new that to educate people, women particularly saying you have rights and you can be remain safe and so forth. And I am incredibly impressed that you knew at this point in your life, especially coming from a different country as an immigrant, to say, wait a minute, let me. I know I need help here, I know I need protection and how to go about getting exactly what you needed. I think that's incredibly impressive and and really a compliment to your personal smarts to have that awareness.
SPEAKER_00Yeah, thank you. And I I guess there is something to maybe it was me, but I also think that family plays a big part because if I wasn't confident in my ability to actually carry out the job roles that I was applying for, or or be a good student in school, or be able to create amazing art, um, or be a great dancer, if I would if my family wasn't encouraging enough to say, you know, you're good at this, you should you should see where it takes you. I don't think that I would be here today. Yeah. So there is uh my dad was uh specifically very, very encouraging, and I remember like he. Would go in a social setting and like open his phone and have an art photo of mine that I created, and he would show people around and be so proud. And I think that that is so important. No matter what you think of yourself as a child, if your parents think that you're the greatest kid in the whole wide world, then you know what? You might actually become one. And that I think that that is what happened with me. And so since then, um I've got my I waited in the you know, waiting cues in the UK are crazy. If you're going public with the NHS, it can take really long. So I waited a year and a half or something, um, got my diagnosis in 25, and then my autism diagnosis in 26. And in that journey, what I have done is that I've spoken wherever I felt something was wrong. And whether that cost me my job every once in a while, or whether that made my manager really furious, or or you know, whether I had to be put on a performance review, it didn't matter because I knew that I needed to speak up. And I knew that ultimately I'll end up where I need to be, where I am accepted as who I am. And I am I am there now, I love my job now.
SPEAKER_01Um and they know who you are, and they see you, and they accept you and they honor you.
SPEAKER_00Yeah, and they hired actually, they hired me for those specific qualities that I bring to the table. And that is that is what that is what I hope for everybody else who's late diagnosed, who's struggling, uh, but it is a road of a lot of it's a root of a lot of suffering, a lot of pain, a lot of fights along the way, a lot of not being able to belong anywhere, and having those lonely nights because you just can't you can't make friends because you're speaking up and people just can't take that, you know. When you challenge their intelligence, when you challenge their understanding of something, right? No one really likes that. Right.
SPEAKER_03And so I've had a lot of rough days, uh, weeks, months, years, I'm I'm I'm appreciative of that sense of loneliness because I also know that part and parcel to autism is the challenge of knowing how to read this, you know, the the the street signs of life, so to speak. And if you're not picking up on that cueing, partly because of the autism, and partly because I'm an immigrant in a brand new country that has a lot more different kinds of rules, and as Anne was suggesting, a button-up kind of society. And then you are wanting to be social. It's a misnomer to imagine that if you're on the spectrum, you want uh to be isolated. I mean, there are those who do, but there are certainly just as many who want to be social and don't quite know how to navigate. And you know, the the complex piece of autism that superimposes against the cultural piece of being a an immigrant coming from a rather large accepting family, a large accepting country into a rather um a country with with some very different uh boundaries and and limitations and and then how to navigate and how to navigate. Yeah.
SPEAKER_00Yeah, but having said that, you know, I am actually thankful and grateful that I am in the UK and that this transpired the way that it did, because it has only strengthened my want to actually do something and change the world in the smallest way possible that I can. And um and I'm still in the charity sector. I I am a project manager uh in social housing, and I'm very happy right now um doing so many good things for for vulnerable people in need uh in so many different ways. And you know, I'm mental health first day trained, I am suicide, I am trained in suicide intervention, and uh so I I am I'm trying to make a space where people feel okay to speak about these things, whether that is in a workplace, whether that is on social media, where that whether that is in schools or with their parents. Um and I hope that you know our talk and and many more to come like these can can play play a part in that.
SPEAKER_01Do you have talks that you give in in the context of the work that you do, um as a project manager or elsewhere? Do you give talks? Do you go around and speak about your experiences? Do you find ways to let people know to the extent that you're comfortable with? Uh let people know that they have hope within the confines of what they're able to do?
SPEAKER_00Yeah, so something that I've uh I've always done is in my new jobs is trying to find out what their kind of mental health support looks like. Or, you know, do they have uh neurodivergent champions or mental health champions, domestic abuse champions, or suicide uh intervention champions? And I've always tried to kind of insert myself in those groups wherever possible. Um, obviously, depending on the size of the company, they may not have one. So I I I tried to start those conversations in the smallest way, obviously, because you know, the thing is no matter how confident you are, and no matter how protected you feel, you will always have this feeling of, ooh, I don't know what will happen if I speak too much. You know. And especially if you're in your probation period where you know you they give you six months or whatever of probation before before you become a permanent employee, it's a it's a very risky time. Yes, it is. You have to you have to tread carefully, but I always try and find those people who I can talk to about these things and spread awareness as much as possible. But but I'm also doing that through my social media. Um, I have an Instagram page, I have a YouTube channel, and I'm thinking of starting long-form content on YouTube where I get into the daily struggles of how I manage school and college and relationships and friendships. And I I I think this is a wonderful idea.
SPEAKER_03We we recently had a young woman who also who who uh is impacted by autism, and she had created a book similarly, because I do think that a sort of uh whether it's in a lecture form or hands-on, let me tell you how I've navigated. I think especially this is a brand new world. And what you emphasize differently than than our previous guest is that you emphasize the law, right? And that I have an awareness of how to go ahead and utilize professional advocacy to make sure that I am safe, that I can be protected on my job, that I can also learn how to go ahead and navigate, and then let me teach you my hard-learned truths. So I I want to tell you, it's been such a pleasure and and encouraging and inspiring. And I want to thank you personally. I know both Ann and I want to to express our thanks and joy for you coming on our show, and um uh we hope to hear more about your successes and how you promote yourself not only through the UK but through the world, because there are women throughout the world, particularly on the spectrum, men as well, certainly, who really um are having tremendous difficulty with launching and being able to stabilize. First off, you mentioned you have a partnership, being in a relationship, and then being in a professional relationship. So you have been an inspiration to us and I know to our wide audience.
SPEAKER_01Thank you very much for having me. We've been looking forward very much to speaking with you because just the little that we knew of your story is so compelling. And because we work in these areas um and always have done, it it is so remarkable to hear your story and to know how you fought. To see you as that, you know, I hate to, I sort of hate to say this, but I'm gonna say it anyway, as a superhero because you didn't give up. There were many moments when I'm sure you felt like you wanted to throw your hands up and say, I just don't know how to do this, and I'm not getting any guidance, and I why am I okay here and not not here? Uh but you one of your biggest talents, I think, is listening. You listen to what people said to you, even if you didn't understand it. And when your partner, someone you care about, uh truly trust, said to you, uh, you're different. There's something about you. It didn't sound to me like you he said it to you in a challenging way. He said it in an informational way. And you heard it. Uh and you went with that to figure out, well, what is that? What is he seeing? I've heard it before, but this is different. So bravo. This is wonderful. I'm I know we're both very happy to thank you.
SPEAKER_03I am so glad to have met you both. And and thank you again. I am Dr. SD Hess. And I am Dr. Ann Kirsch. And this is on and off the spectrum podcast. We have had the most marvelous, inspirational discussion this this morning, this afternoon, and this evening, depending on where you are tuning in, with again Kushi Kendeawall. And I want to uh thank you for joining us and continue to wish you much success in both your professional and personal challenges and successes in life. And thank you again for joining us. If you enjoyed today's episode, please don't hesitate to both follow us, subscribe to our podcast. You can find us on all the social media platforms, and again, have a oh, one more thing. If you think that you have an important part to the story that you would like to add, uh just like Cushy did, she reached out to us, and we have been very grateful to bring her on board as one of our prominent guests. We would like to invite you to for the same type of opportunity, please reach out to again on and off the spectrum podcast. Again, we wish everyone a safe day, a safe journey, and Cushi, thank you again.
SPEAKER_00Thank you.
SPEAKER_03Thank you.
