Tony Mantor: Why Not Me the World
Autism is a complex neurodevelopmental condition that affects millions of people worldwide.
It is characterized by difficulties in social interaction, communication, and repetitive behaviors.
Although autism is becoming more widely recognized, there is still a lack of understanding and awareness surrounding the condition.
As a result, many individuals and families affected by autism struggle to find the support and resources they need.
Why Not Me The World podcast aims to bridge that gap by providing valuable information and insights into autism, fostering empathy and understanding, and promoting acceptance and inclusion.
Nashville based Music Producer Tony Mantor explores the remarkable impact his guests make by empowering their voices in spreading awareness about autism and helping break down the barriers of understanding.
Join Mantor and his guests as they delve into the world of autism and mental health to explore topics such as diagnosis, treatment, research, and personal stories.
Together, we can create a more informed and compassionate society for individuals with autism.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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.
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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)
Welcome to why Not Me? The World Podcast, hosted by Tony Mantor, 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. 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. Hi, I'm Tony Mantor. Welcome to why Not Me? The World. Today, junaid 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 the state to be known as a family medicine physician.
Speaker 2: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 and in the UK also in the Middle East as well, in terms of autism and ADHD and neurodivergence. That came about, I'd say, in the last four to five years After my son's diagnosis of autism or ADHD.
Speaker 1:When was your son diagnosed autistic?
Speaker 2: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 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 who's 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 this is coming from. And through the usual questionnaires and screening tools, he made a formal diagnosis of autistic spectrum disorder and ADHD.
Speaker 1: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?
Speaker 2:I can't overstate how big the change was in our 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, autistic children and those neurodivergent who struggle with the emotional regulation. They struggle with that, but it's been life changing for someone who would be impossible to teach in school and sit down and learn if someone is academically now not thriving yet but getting towards that stage where he's actually able to function and live. So, from a family perspective, we're not seeing a child sat in the corner of the room crying and having outbursts and hitting their head against a wall literally, and then, you know, becoming violent. So that was dramatic For my own.
Speaker 2:In my own case, it was my wife who saw that my own behaviors mirrored to some extent some of my son's. So I was diagnosed with depression or depressive disorder back in 2010, 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.
Speaker 1: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?
Speaker 2:So in his case, we had to homeschool him. He would struggle in an ordinary academic setting because of the vulnerabilities that come with his neurodivergence. So he was 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 tasks. At the same time, there are some pervasive, persistent symptoms that haven't got better yet for which you require therapy, for example, his executive functioning, getting him to complete his homework on time and 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?
Speaker 1:eight years old now. No, he's now 12. 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?
Speaker 2:So the teenagers are notoriously difficult when they're not neurodivergent, nevermind with. Neurodivergence is an added factor. Absolutely, both very scary to think about it and to see in terms of the uncertainty that's involved. Because I've never. I was an undiagnosed neurodivergent child but I had no idea I was, but now I've got. I was an undiagnosed neurodivergent child but I had no idea I was, but now I've got a child who has that.
Speaker 2:It's difficult and for us as a family and for him, my priority as a parent is I want him to function well in society, so I want him to be able to hold down a job. I want him to be able to function within a work environment. I want him 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, as he matures, 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 podcast in four years to update you on that. Absolutely.
Speaker 1: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?
Speaker 2:The neurodivergence is not always well understood by others. It's a relatively new, emerging factor in the world. So some families thankfully do understand and they've recognized and seen that a whole lot of things are not 100% right and they've been able to understand that this is a type of development that's occurred in him and they're there to adapt for him. For example, they don't come around to a house except that he gives a warning 24 hours in advance so that he doesn't have to pry from his routines that are destructive and so on. So these adaptions are made.
Speaker 2: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 he not paying attention? Why is he not saying hello? That could his self-esteem, because he sees that, but he doesn't necessarily understand why, because it is still a very much a journey With friends. It's interesting because he struggles to maintain those friends type of relationships he has in boys his age who he knows how many of those 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.
Speaker 1:Sure, Now do you have other children as well? I do. How's the interaction between your other children and him?
Speaker 2: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 can struggle at times that he requires a little bit more time to be supported than his siblings. That causes the disproportionality in terms of the time we give to his child. That can bring resentment. He requires his fixations. At the moment, for example, he's very interested in politics and geography and war and so on. He needs his time on YouTube, he needs his time to do specific things. But then the siblings will their natural sibling rivalry. What about me? What about my camera? What about my touch and 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 weight to each child. But it's difficult as a parent as well, because you try to give equal weight to each child but there is a natural disparity because some children unfortunately require that bit of extra support that others don't necessarily.
Speaker 1: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?
Speaker 2:Absolutely so. He develops specific hyperfocuses and then he's exceptionally good at them and he gets to an extremely high standard very, very quickly because he spends that much time on it. The danger at times with this and we've noticed with him is that it can go unregulated and can become morbid at times. So let's take history as an example. He wants to learn about World War I and World War II and the battles and the trunks and all these military deals and everything else that occurred Great, wonderful, all the maps and so on. But then it can creep into morbid obsessions around dying or how did this occur? And you want to know the details of certain things which are not necessarily age appropriate. So it's both a massive strength that they focus, 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 life. It can't be left unchecked.
Speaker 1:Absolutely. There's a certain amount of things we have to watch out for as parents. I've talked 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?
Speaker 2:So he definitely has meltdowns and we've had to work with speech and language therapists and occupational therapists and psychotherapists to understand those meltdowns and those tributes and, again, what can lead to that eruption and how to mitigate that as well. There's various different strategies that we use but, yeah, we do know what to say with him. So if he's not getting away with a particular thing, he will begin to repeat himself. He'll get featured a lot more, he'll become more aggressive, he'll raise his voids, he'll even recognise 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.
Speaker 2:So at that point we need to put our mitigation in place so we have a weighted life beat. For example, we're sitting down, we're giving that focus and, as you're probably aware from your previous projects as well, once they're in a meltdown, that's it. You can't do anything. You have to ride that wave and support them through that and give them the 5 minutes, 10 minutes, 15 minutes, and it'll settle. As he's getting older not intentionally, but as he's getting older the marriage becomes slightly more difficult to manage, especially for the mother, because of him becoming physically stronger. He's able to push stronger punch and so on, so he can hurt, unwittingly, hurt a bit more. So they can be difficult to manage but they last about 20 to 30 minutes at times. But when severe, no broken plates, no bruises, but the whole household comes to a stop. The children have to go to another part of the house, he has to have his own family to be supported because he needs that release before he goes back into it. It's a more neutral emotional stance.
Speaker 1: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 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?
Speaker 2:The asking question and 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 a meltdown that we're not sure why he's having this. Is he being disruptive? What's the cause for it, and so on. So the diagnosis with the watershed moment, we understand it, but even then we wouldn't understand what was behaviors for us as a family and, you know, keeping us together as a family.
Speaker 2: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 talking but it's about understanding him, understanding his behaviors and understanding how he expresses himself.
Speaker 2:So when we understood the physical and verbal cues that were coming from him that would and I really understood this was 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 that. He's not being disruptive, he's not being a bad child, this is just him and he cannot manage this. And then your mind as a parent naturally switches to a natural parental mercy towards the child From being an agitated parent my God, why is this child being so disruptive To? Well, actually, my child, 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 attributes 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.
Speaker 1: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.
Speaker 2:Absolutely. Once he had the maturity it's about the last year or two to understand that, yeah, he invented himself. He's able to sign books, he's about to have a mouth bag. He's getting into a more emotionally agitated state. What I would say, though, is that I'm sort of repeating this, but I know I mentioned it earlier, but I think with ourselves in particular, the 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'd say, any other parents who are listening to this as well, just to be aware that, if you do have that sort of support available professional support they are there for a reason, because they'd had that skill to be able to interact with the child and it's thing to them, and they're allowed to be. And, yeah, once he understood what was happening to him internally, we understood as well. It was a whole different dialogue, and it has been since, and we know, as I said, we know where it went, the mitigation in place as well.
Speaker 1: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?
Speaker 2:Absolutely so. In terms of the work that I do, I'm a primary care doctor and even within the medical world there's a difficult but real gap in understanding of autism, neurodivergence, adhd, and there's still clinicians 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 we see this? So, yeah, through not necessarily through any any active looking into advocacy, but I have, in that sense, become become an advocate, I suppose from my background. I'm British, born and raised in the UK, my background is from Southeast Asia, my parents are from Southeast Asia and within this sort of community as well, there's a lack of understanding. So, being outspoken about it and speaking about and explaining what it is, I think it reaches a lot more people and that understanding will improve with time. But any clinician will struggle.
Speaker 2:Autism and ADT are 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 you have a vested interest in it, it can be difficult to understand. So 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 by small, I mean it hasn't reached as many people as I would 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 and how to manage it within a diverse range of communities.
Speaker 1: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 meltdown in public or they might have some of their issues that they have, so that they can better the community?
Speaker 2: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 have interaction with people who can educate, but I think that's a very limited. So the problem is far more widespread. It affects workplaces. People die in hospital. For example, in the UK there was a child who died in a hospital. It was autistic. He died in a hospital because they weren't able to express the pain that they were having and the clinicians were unsure what was going on in the patient. They died of sepsis because the clinician missed the period that the autistic child had.
Speaker 2:The problem is pervasive within many aspects of society. When we look at the media, autism is often when you think of autistic characters in movies and TV shows. They're often funny. They're often the weird ones who have some 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.
Speaker 2:It's a comedy about a man who you know he doesn't speak much, but there's all these funny actions and it's all nonsensical and stupid actions, clearly based on someone who may have autism or neurodivergence. So when that? When that, you know, when autistic people start, of course, even media mainstream media as being funny people to look at and laugh at and isn't it funny that they said that in such a blunt way and they speak in such a direct way and so on. Then there's a lot of work to do. We kind of, as individuals, do our small amount, but I think the biggest and best way to get that understanding is through it's as much media as possible so people see it and hear it from sources that need to hear it and see it from.
Speaker 1:Yes, we as people sometimes find humor the only way to address something when it's uneasy to 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.
Speaker 2:Absolutely, absolutely. I think the work that you're doing here with this podcast is 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 is benefiting from this podcast for 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.
Speaker 2:Why are autistic people sometimes blunt in the way they speak? Why do they miss emotional and social cues? How does that manifest and how could that affect the workplace? How could that affect their medical treatment? How could that affect the way they shop, 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. You know, why would a child struggle to listen to, you know, loud noises or music? Because of the sensory issues. So it's all these, I don't know, all these sort of educational points, I don't know, and eventually it'll make an impact, but it's a slow journey, unfortunately.
Speaker 1: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?
Speaker 2: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 ankles and he has to wear particular fabrics I can't remember which type of more cotton-based fabrics. He has to use a specific spoon and specific texture. He can't use other spoons or other materials or other textures. 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 it to dry because he doesn't like the feeling Even down to having a shower. He needs to have a shower with very hot water. He can't have it with cooler or cold water because that makes him feel very uncomfortable. So all these sensory issues they may sound very mild to people but it makes a huge difference to him. He has got his mood and his emotional regulation through the day.
Speaker 1: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.
Speaker 2:So a little bit. It doesn't quite work like the States it does in terms of the people that come to see me. So this is an FQI system. I get random people who come to me. It's not necessarily based on my portfolio or my experience, but I do a lot of urgent care work so when I speak to patients on the phone I can almost immediately tell who they are. I can almost immediately tell both who have autism because of the way and directness in which they see and the difficulty and 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 topic to topic because they have the neurodivergence and ADHD. That's struggles that cause them to struggle to focus. So so, yeah, I do see it. I see it and I make sure. From my perspective, I make sure I take more time with them because it is necessary in order to do just justice to the needs that they that they have.
Speaker 2:I have more recently had a pair of 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 within my day to day work, yeah, 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 had the lived experience, it's a lot clearer. I'm able to meet the needs a lot better and a lot more easily than I would have done historically. To be honest, I would probably have been in the camp of clinicians if they asked me 10 or 15 years ago about ADHD. No, that's the condition of too much, you know, too much cereal, too much, etc. But boy has my mind changed.
Speaker 1: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?
Speaker 2:and so there's there's a lot of advice to give, in no particular order necessarily, but I would. 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 to be related, the diagnosis to be related 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 from them does no one any good. So make sure that they understand why they are the way they are and that you love them very much, no matter how they are, and society will begin to understand them. They should carry on the way they are. So that's the first thing.
Speaker 2:The second thing I say is that there is a big overlap between ADHD and autism spectrum disorder. So I think around about 30 or 40% of those with autism have ADHD as a dual diagnosis. So not all behaviors that come from autism are necessarily explained by or come from ADHD are necessarily explained through autism. So if a child has further symptoms, for example, they're really struggling to focus, they're fidgeting, they're moving around a lot and they're unable to stay still. They look vacant a lot of the time in their space rather than closer to the TV or concentrating on a video book. Beware that there may be a dual diagnosis alongside the autism spectrum disorder, so they may need further support or even medication in that respect, need further support or even medication in that respect.
Speaker 2: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 and start to read more around the subject, and there are particular resources.
Speaker 2:This podcast is amazing, but there are resources that I'd also say that are really, really useful to professionals who really, for me at least, explain my son's 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 does fantastic work around ADHD and autism research, autistic burnout and even around the effects it has on you as a parent, because an autistic child is challenging in education settings when educators get to go home and have to try without that child. There you have a child with you, essentially on the weekends, otherwise you have them there with you all day. You can't just dump them 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 you have people around you who understand you or you build in mechanisms that allow you to regulate yourself as well.
Speaker 1:Yeah, that's great information. I really have enjoyed this. 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.
Speaker 2: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 and that you're doing that will be impactful for so many people and, yeah, and it's an avenue for them to understand definition better and for people like myself who have that diagnosis to be able to relay that information to others as well in a digestible manner, because we may listen to this and make may change your life. Thank you so much, ertunen, for your time. Thank you so much for having us here. It's a very good thing you're doing.
Speaker 1:Thank you and the pleasure's 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 tonymantorcom 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. You.