Tony Mantor: Why Not Me ? - Junaid Hussain's Advocacy for Autism Awareness and Acceptance

Episode Date: November 27, 2024

Send us a text Imagine discovering that the challenges your child faces are, in fact, a reflection of your own. Junaid Hussain, a family medicine physician, shares his deeply personal journey of navigating autism and ADHD within his family, a path that began with his son's diagnosis at the age of eight and led to his own self-discovery. You'll hear about the profound changes and adaptations they've made, such as homeschooling and medication, to better support their son's emotional regulation and impulsivity. Junaid’s story is not just about overcoming obstacles but also about embracing the unique journey of acceptance and understanding that comes with raising a neurodivergent child. We also shed light on the broader societal landscape of autism awareness, starting from the initial hurdles families encounter before a diagnosis is established. Junaid discusses how speech and language therapists play a crucial role in helping families understand autism-related behaviors. Moreover, we address the urgent need for empathy and awareness not only in society but also within the medical community. Junaid's experiences have fueled his advocacy for improved autism understanding across diverse communities, stressing the importance of media and education in fostering a more empathetic society. Finally, we offer guidance for those grappling with autism and ADHD diagnoses, whether early in life or later stages. The potential overlap between autism and ADHD is explored, emphasizing the value of professional guidance and resources, including insights from experts like Professor Tony Atwood. We highlight the importance of self-care for parents to ensure they are well-equipped to support their children effectively. This episode is a testament to the power of sharing personal stories, inspiring hope, and building a connected community where everyone feels supported and understood. https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mayator. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Honey Mentor, welcome to Why Not Me the World. Today, Janade Hussain joins us.

We will be discussing his son, which was diagnosed autistic and ADHD. We'll also discuss how he found that he mirrored his son's behavior and was diagnosed autistic along with ADHD as well. Thanks for coming on the show today. Thank you so much. Oh, the pleasure is all mine. I understand that you practice medicine and became a doctor in the UK. So I'm a doctor in a state to be known as a family medicine. Finishing the family medicine physician.

I'm a primary care doctor in the UK. So I completed my training in 2015 and I've been a doctor since both here in the UK, also in the Middle East as well. In terms of autism and ADHD and neurodivergance, That came about, I think, in the last four to five years, after my son's diagnosis of autism or ADHD. When was your son diagnosed autistic? He was diagnosed right at the beginning of 2020. He was about eight years old at the time.

We knew for many years he struggled with his mental health. And it was difficult even as a doctor myself to pinpoint and find out why and what was happening. We had a lot of discussions with different people. Eventually, a friend of mine, he was a psychiatrist. I spoke with him, and I said, look, I'm worried. very anxious, very depressed. And I don't know why. He's only eight years old. I don't know where it's coming from. And through the usual questionnaires and speeding tools, he made a formal diagnosis of autistic spectrum disorder and ADHD. Once he was diagnosed autistic, you finally

had the opportunity to understand what was going on and the reasons behind some of the issues that you thought he had. How did that change him and how did that change your life? Massively. I can't overstate how big the change was in their life. So from his perspective, he eventually stabilized on a medicine called atomoxetine, which is a type of antidepressant, but it also works for ADHD. And it controlled his impulsivity, his mood, a significant amount. It's not perfect. With autism, you know, autistic children and those neurodivergence struggle with the emotional regulation. It's a struggle with that, but it's been life-changing. But someone who is, would be impossible to teach and school and sit down and learn if someone is academically now,

you know, not thriving yet, but getting towards that stage where he, you know, he's actually able to function and live. So from a family perspective, you know, when I'm not seeing a child is set in the corner of the room crying and having outbursts and hitting the head against the wall literally and then, you know, become a violent. So that was dramatic. For my own, in my own case, It was my wife who saw that my own behaviors mirrored to some extent some of my sons. So I was diagnosed with depression or depressive disorder back in 2010 or 2011, because that's what it was assumed that it was. The reality is that, you know, it ended up being autism as a diagnosis,

autistic spectrum disorder and ADHD as a diagnosis. Now that you have a better understanding of what's going on, how has he adapted to the outside influences like friends, family, and ultimately schooling. So in his case, we have to homeschool him. He would struggle in an ordinary academic setting because of the vulnerabilities that come with, he's no divergence.

So he has a prone to either bullying or to being a follower in terms of following other children who perhaps may push him into a particular path that's not necessarily desirable. So we're having to homeschool him or having some private tutoring. Yeah, but his ability to be able to interact with others is amazing.

It must be better. his ability to focus, his ability to complete task. At the same time, there are some pervasive, persistent symptoms that haven't got better yet, for which he requires therapy. For example, his executive functioning, getting him to complete his homework on time, getting him to get out of bed. You have to literally dictate every step to him several times for him to do it. Is he eight years old now?

No, he's not wrong. Okay, so now you've known for the last four years that he is indeed autistic. What do you see happening for him? within the next four years. So the teenagers are notoriously difficult when they're not neurodivergent. Never mind, with neurodivergent is an added factor. Absolutely. Both are very scary to think about it and to see, in terms of the uncertainty that's involved

because I've never, like I was in undiagnosed, neurodivergent child, but I had no idea that I was. But now I've got a child who has that, it's difficult. And for us as a family and for him, my priority as a parent is I want him to function well society. So I want him to be able to hold down a job, I want to be able to function within a work environment or to be able to interact with others. So the priority in the next four years for us and for him will be to develop those skills and has been matured us to allow him that or give him that ability to self-regulate both his emotions but also his ability to work

with others. So our priority is that. But it'll be very, very interesting. I might need to come back on this part in four years to update you on that. Now that you've seen him grow over the last four years, what do you see from your friends, your family, and the circle of people that you see on a consistent basis? How did you see the changes from when he was growing up, not knowing, with the issues that you were having, to him being diagnosed to where he is now? The neurodivorance is not always well understood by this. It is a relatively new emerging factor in the world.

So some family, thankfully do understand, and they've recognized seeing that, you know, a whole thing are not 100% right. And they've been able to understand that, you know, this is a type of development that's occurred in him and they're able to adapt for him. For example, they don't come around to a health, except that he gives us a warning 24 hours in advance so that he doesn't have to bribe and his routines are disrupted and so on. So these adaptions are made. For some, they look at him as this is a destructive child.

Why is he behaving in this way? Why is he rude? Why is he not paying attention? Why is not saying hello? That kept his self a thing. He sees that, but he doesn't necessarily understand why. Because it's still a very much journey. With friends, it's interesting because he struggles to maintain those friends-type relationships.

He has him boils his age who he knows. How many of those are he truly poor friends? It's difficult to say. Again, down to that naturally isolationist mentality that develops with autism and neurodivergence. So he struggled with developing friends to some extent or another. Sure. Now, do you have other children? as well. I do.

How is the interaction between your other children and him? So again, as an adult, I struggle to interact with him and to understand him fully. Then you can imagine how difficult it is for his siblings. They have struggled at times that he requires a bit more time to be supported and then his siblings. That caused the disproportionality in terms of the time we give to his child. That can breed resentment. He requires his, you know, his fixations and his, in fact, At the moment, for example, he's very interested in politics and geography and war and so on he needs his time on YouTube and he needs a time to do specific things.

But then the siblings will, their natural sibling rivalry, what about me, what about my camera, and people, whatever my touching search. Thankfully, they're not so physical with each other, but the verbal side is there between them. And it's difficult again as a parent as well, because you try to give equal weighting to each child, but there is a natural dishonesty because some children unfortunately require that a bit of extra support, but the others don't necessarily. Yes, that can be extremely difficult. I've spoken with several parents.

There's a common thread amongst most of them, and that is that when their child gets focused on something, that's all they eat, breathe, and sleep with. Is your son like that? Does he get extremely focused on things that he likes to do? Absolutely. So he's developed specific hyperbocuses, and then he's exceptionally good of them,

and he gets to an extremely high. extended very, very quickly because he spent that much time on it. The danger at times with this, and we've noticed it with him, is that it can go on regulation and it can become morbid at times. So let's take, you know, history as an example. Now, he wants to learn about World War I and World War II and, you know, the battles and the trunks and all these of military deer and everything I thought occurred.

Great, wonderful, all the maps and so on. But then it can creep into morbid obsessions around what dying or how did this occur. and you want to know the details of certain things, which are not necessarily age-appropriate. So it is both a massive strength that are focused, but it also unchecked at a young age, can sometimes lead to obsessions that are a bit morbid or a bit dangerous for the child's class. It can't be left unchecked. Absolutely. There's a certain amount of things we have to watch out for as parents. I've taught with several parents that tell me that their child can have major meltdowns,

And then some will say they have small amounts of meltdown. How does he fall within that range? Does he have them at all? So he definitely has meldialed out. And we've had to work with a speech and nanos therapist, and psychotherapists to understand those meltdowns and those tributes. And again, you know, what can lead to that eruption and how to mitigate that as well. There's various different strategies that we use.

We do not obviously with him. So if he's not getting away with a particular thing, he will begin to repeat himself, would be featured a lot more. He'd become more aggressive. He raised his voids. He even recognized himself, I'm going to have a meltdown. And he often says,

I need to do something. I need to, he can't quantify what it is that he needs to do. Yeah, so at that point, we need to put our mitigation in place. So we have a weighted life for example. We're sitting down.

We're given that focus. And as you probably are aware from your previous practice as well. I mean, once they're in a mountdown, that's it. You can't do it. You have to ride that wave and support them through that.

and give him the five minutes, ten minutes, 15 minutes, and it'll settle. After him feeling older, not intentionally, but as he's getting older, the amount of becomes a certain more difficult to marriage, especially for the mother, because of him becoming physically stronger, he's able to push stronger, punch, and so on. So you can hurt unwittingly, it hurts a bit more. So they can be difficult to marriage, but they lasted about 20 to 30 minutes at times. But by severe, no broken plates, no bruising. but the whole household can still stop.

You know, the children have to go to another part of the house. He has to have his own family to be supported because he needs to release before he goes back into it. It's a more neutral, emotional sense. Meltdowns and autism in general can have a real strain on the family dynamic. And unfortunately, around the world, it causes a lot of breakups and divorces. How did you make your way through this? At first, you had no idea that he was always.

autistic and he had all those issues that he was concerned about. Then when you found out you had an idea of what you had to do, which is still difficult. How did you as a family survive that and navigate through it to stay strong? Ask him question. And you remember that he was diagnosed before I was. So I was there as a autistic ADHD adult in the same household. And he's having meltdown. We're not sure why is having this. Is he being disruptive? What's the court for it? And so on. So the diagnosis with a watershed mode, we understand them. Even then, we wouldn't understand what was behaviors. For us as a family, keeping us together as a family,

the biggest, most helpful support first came from the speech and language and occupation therapists. Because speech and language in particular, it's not just about 12 people, but it's about understanding him and understanding his behaviors and understanding how he expressed himself. So when we understood the physical and verbal cues, that were coming from him and I understood this is a normal part of it, we were able to understand that this is, he's not being disruptive, he's not being, you know, he's not being a bad child.

This is just him and he cannot manage this. And then your mind as a parent, you know, naturally switches to a natural parental mercy towards the child from being an agitated parent. Because my God, why has this child being so disruptive to actually my child, this is, this is who he is. and he can't help this, and we need to help him in this, because he has so many wonderful, beautiful accrues otherwise, and that this is just one part of him that we need to help in order for him to see the beautiful sides of him that are still there as well. Yes, absolutely.

So a lot of people do not understand autism, so they do not know the difference between a meltdown or a kid having a tantrum. Yeah. Did you have a difficult time explaining that to him that he wasn't doing these things to be disruptive and unruly. He was going through this because of his autistic characteristics. Absolutely.

Once he had the maturity, it's about a last year or two, to understand that, yeah, he infended himself because he's able to sign horse, that he's about to have a mountdown, he's getting into a more emotionally ecstatic state. What I would say, though, is that, but I'm sort of repeating that this, but I know I mentioned it earlier, but I think with ourselves in particular

that speech and language therapists were very, very good in providing him with the information in an accessible manner for him and also providing us as parents with that and I'll say any other parents who are listening to this as well as to be aware that if you do have that sort of support available

professional support, they are there for a reason because they had that still to be able to interact with the child and it's famed to them in their language and yeah once he understood what's happening to him internally and we understood as well. It was a whole different down on it. And it has been seen. We know, as I said, we know where it went to put the mitigation in place as well. Now, the last four years you've

gone through the evolution of finding that he's autistic and dealing with his autism within the family. Has that made you become more of an autistic advocate within your practice? Absolutely. So in terms of my work that I view of certainly, I'm primarily, I'm primarily, doctor and even within the medical world, there's a difficult but real gap in understanding of autism, neurodivergence, ADHD, and they're still conditioned out there who don't believe ADHD is a real condition. I think it's due to drinking too much pot and so on, or should be serious. So, yeah, not necessarily through any active looking into advocacy, but I have, in that sense, become an advocate. I suppose from my background on British, border rates in the UK,

my background is from Southeast Asia, my parents are from South East Asia. And within this sort of community as well, there's a lack of understanding. So I've spoken about it and speaking about and explaining what it is, I think it reaches a lot more people. And that understanding would improve with time. But any condition will struggle. Autosome ADD is those sort of neurodivergent conditions that unless you've lived it or seen it in person, it can sometimes be very, very difficult to understand.

Unless they have a vested interest in it, It can be difficult to understand. I appreciate where many clinicians come from. But, yeah, it might be a very small amount of work, but it's important work in terms of... But small, I mean, it hasn't reached anything like it to, but it's important work nonetheless in terms of explaining what it is and making sure that people are aware of what autism is,

within a diverse range of communities. When I first started my podcast, I did not know anything about autism. I didn't even have a simple basic understanding. Now, I believe that's the most important word that we can use as a society, is autistic understanding. What can we do as a society, in your opinion, to bring more understanding to the autistic community from those that aren't autistic or don't know anything about autism so that they can have more empathy on someone when they might have a meldisc, down in public or they might have some of their issues that they have so that they can better the community. I think there needs to be a much more concerted effort within the broader media.

I mean, you say what can we do as individuals? I say, also we can advocate and we can, you know, we have interaction with people who can educate. But I think that's a very limited so because the problem is far more widespread. It affects workplaces. People die in hospital. For example, in the UK, though, the children. child who died in hospital, it was autistic who died in hospital because they weren't able to stress the pain that they were having. And the clinicians were unsure what was going on in the patient. The diet of sepsis, because the clinician missed the pews that the autistic child had. The problem is pervasive within, you know, many aspects of society.

When we look at the media, autism is often, you know, when you take up autistic characters in movies and TV shows, they're often funny. You know, they're often a weird one to have, you know, a sort of weird or funny trait. I mean, I'm not sure whether you're familiar with a character in the UK called Mr. Bean. It's a comedy about a man who, you know, who doesn't speak much, but there's all these funny action and it's a non-sensible and stupid actions, clearly based on someone who may have autism or neurodivergence. So when that's when autistic buffed across, even media,

mainstream media as being funny people to look at and love it, And isn't it funny that they said that in such a blunt way and the speak in such a direct way and so on? Then there's a lot of work to do. We can as individuals to do our small amount, but I think the biggest and best way to get that understanding is through, it's as much media as much the people see it from the, and hear it, from sources that they need to hear it and see it from.

Yes, we as people sometimes find humor the only way to address something when it's uneasy to talk. talk about, they're really not lightening it up. They're really creating more of an issue than they really realize, unfortunately. The best thing I think, if we could find a way where people could just sit down, communicate like we are, put across the things that need to be addressed so people understand, and that might just help them understand what the autistic community actually has to deal with on a daily basis. Absolutely. Absolutely. I think the work that you didn't here with this podcast, absolutely vital.

Any and every advocate their work is essential, because it all adds up, it all makes a little bit of difference. Even if there's two or three people, one person who gets benefited in this podcast for the sake of argument, then they then go on to influence other people. It's a ripple effect.

And so it's essential, but it's essential that the autistic voice is heard and understood, like you said. There's one thing being heard, but another thing being understood. why autistic people sometimes blunt in the way they sleep?

Why do they miss emotional and social cues? How does that manifest? And how could that affect the workplace? How could that affect, you know, their medical treatment? How could that affect the way they shot? And the way they, you know,

what clothes they wear, why do they wear clothes in a particular way because of the sensory issues that they have? Hey, hey, no, why would the child struggle to listen to, you know, loud noises or music because of the sensory? So it's all these, I don't know, all these sort of educational.

educational points. I don't. And eventually you'll make an impact, but it's a slow, journey, unfortunately. Yes, it is. And you just brought up another topic, and that's one of textures. Does your son have any issues with texture of clothes or texture of food at all? Absolutely. So, for example, he has to wear, he has to tuck his trousers into his socks. He can't wear his socks, touching his animals. And he has to wear particular fabrics, I can't remember which type of a bit more cotton-based fabrics. He has to use a specific spoon and specific texture. He can't use other smooth or other sort of materials, other textures.

So yeah, he does have that sensory aspect. He doesn't like to be touched. He needs to air dry when he has a shower. He can't use a towel to dry himself. He has to sit there and allow him to dry because he doesn't like the feeling. Even down to having a shower, He needs to have a child with very hot water. You can't have it with cooler or cold water

because that makes him feel very uncomfortable. So all these sensory issues are, you know, they may sound very, very mild to people who are white, but it makes a huge difference to him. He's got his mood and his emotional regulation through the day. So in your practice, do you come across many autistic people, one, because you understand autism because you have an autistic son,

and you were diagnosed, and two, because people are understanding that you have that in your family now. So a little bit. It doesn't quite work like the state, it does, in terms of the people who come to see me. So this is an NICUI system. I get random people who come to me. You don't necessarily based on my portfolio or my experience, but I do a lot of urgent care work. So when I speak to patients at the phone, I can almost immediately tell the families are. I can almost immediately tell both who have autism because of the way and directness in with their feet. And they're difficult to anxiety that comes through the phone

when they're trying to explain their symptoms and explain the challenges, but they're unable to. And they need to take more time. Or they jump from topically topic because they have the neurodivergence in ADHD. That's the struggle. They're causing them to struggle to focus. So, yeah, I do see it. And I make sure, in my office, I make sure I make sure I take more time with them.

because it is necessary in order to do justice to the needs that they have. I have more recently had parents, children with autism, come to me and again, and to my wife as well for advice. Of course, we had the experience both as a child and having a child with autism and also myself. So we do get that, but we do get my day-to-day work. Yeah, but we do get a lot of autistic people who do ring up or who do come and see us. And the challenge is for me now, having to be. had delivered it for you. It's a lot clearer. I'm able to meet any

a lot better and a lot more easily than I would have done historically. To be honest, I would probably have been the camp of clinicians if you asked a kid of 15 years ago by ADHD. No, that's the condition of too much, you know, to be serial, too much, et cetera. But as my mind changed? What would you tell people that are just finding out that their child might be autistic or is autistic, or they're just finding out that they're autistic and they found out later in life. What are some of the things that you might tell them to help them understand and start creating a pattern for their life that will better it for the future?

So there's a lot of advice to give in no particular order necessarily, but I would start with make sure that you, if you can afford it and you're able to get it, or you have medical cover for it to get the professional assistant in early for you to be able to understand your child and for that could be related, the diagnosis to relate to the child. Because they understand because they will enter school or they will enter the world and see that they are different in some form or another to other children. So hiding the diagnosis from them, there does no one any good to make sure that they understand why they are the way they are and that you love them very much, no matter how they are.

are and society will begin to understand them. They should carry around the way they are. So that's the first thing. The second thing, I say that there is a big overlap between ADHD and autistic spectrum disorder. So I think around about 30 or 40% of those autism have ADHD as a dual diagnosis. So not all behaviors that come from autism are necessarily explained by, of course, ADHD are necessarily explained to autism. So if a child has further symptoms, for example, they're really struggling to focus.

because they're fidgeting and moving around a lot. And they're unable to stay still. They look vacant a lot of the time and stay in space rather than concentrating on TV or concentrating on a video book. Beware that there may be a dual diagnosis alongside the autistic spectrum disorder. So they may further support or even medication in that respect. The third thing I'd say is that once you know that the diagnosis is there

and you will no doubt start to look for resources I start to read more around the subject. And there are particular resources. This podcast is amazing. But there are resources that I'd also think that are really, really useful. It's a professional to really, for me at least, explain my self-condition in a really easy to understand way. So there is Professor Tony Atwood, who now lives in Australia,

but he's a British psychologist, I believe, who there's a fantastic work around ADHD and ADHD, autism, sorry, an autism, research, autistic burnout, and even around the effects that have on you as a parent, because an autistic child is challenging in education settings. You know, but educated, get to your home and have to try without that child that you have a child with you, you know, essentially on the weekends, otherwise you have been there with your order, you can't do stuff and somewhere else.

And that will have an effect on you and on your mental health. And you can only help them if you look after yourself as well. So make sure that you have that support either for yourself. They have people around who understand you or you build in mechanisms that allow you to regulate yourself as well. Yeah, that's great information. I really have enjoyed this. I want to thank you for coming on the show. I think it's been a wealth of information.

Sorry for having me. Thank you so much for the amazing work you're doing here as well with this. really, really, it's incredible. Honestly, you have a great amount of respect for me because this is an amazing and important effort that you're doing. That would be impactful for so many

people. And it's an avenue for them to understand definition better. And for people that myself, do you have that diagnosis, to be able to relay that information to others as well in a digestible manner. The person may listen to this and may change their life. Thank you so

much, Eratron, for your time. Thank you so much, I'm going to see. I'm going to pay everything you do. Thank you, and the pleasure is all mine. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you.

If you know anyone that would like to tell us their story, send them to tonymentor.com. Contact. Then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone everywhere about why not me the world, the conversations we're having and the inspiration our guests give to everyone, everywhere that you are not alone in this world.