Junaid Hussain
Appearances
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
I think there needs to be a much more concerted effort within the broader media. When you say what can we do as individuals, I say 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 hospital.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
It was autistic. He died in hospital because they weren't able to express the pain that they were having. And the clinicians were unsure what was going on with the patient. They died of sepsis because the clinician missed the period that the autistic child had. The problem was pervasive within you know, many aspects of society.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
When we look at the media, autism is often, you know, when you look at autistic characters in movies and TV shows, they're often funny. You know, they're often the weird ones who have, you know, some sort of weird or funny trait. I mean, I'm not sure whether you're familiar with the a character in the UK called Mr. Bean.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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, who's a psychiatrist, I spoke with him.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
It's a comedy about a man who 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, when autism is buffed out across even media, mainstream media has
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
being funny people to look at and laugh at and you know 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 then we we can as individuals to do a small amount but i think that the biggest and best way to get that understanding is through it's as much media as possible so people see it from the i can hear it from from sources that need to hear it and see it from
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
Absolutely. Absolutely. I think the work we're doing here 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 do autistic people think they're 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
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
you know, their medical treatment, how could that affect the way they shot and the way they, you know, what clothes they wear, why they wear clothes in a particular way, because of the sensory issues that they have. Why would a child struggle to listen to, you know, loud noises or music? Because of the sensory issues.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
Absolutely. So, for example, 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, but more cotton-based fabrics. He has to use a specific spoon and a specific texture. He can't use other spoons or other materials or other textures. So yeah, he does have that sensory aspect.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 spinning tools, he made a formal diagnosis of autistic spectrum disorder and ADHD.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 himself 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So all these sensory issues are, you know, they may sound very, very mild to people, but it makes a huge difference to him. It affects his mood and his emotional regulation through the day.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So it is a 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, not necessarily based on my portfolio or my experience, but I do a lot of urgent care work. So when I speak to a patient on the phone, I can almost immediately tell who they are.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
I can almost immediately tell both who have autism because of the way and directness in which they speak. 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
Or they jump from topic to topic because they have the neurodivergence and ADHD that causes them to struggle to focus. So, yeah, I do see it. And I make sure, from my own perspective, I make sure I take more time with them because it is necessary in order to do justice to the needs that they have.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
I have more recently had parents of children with autism come to me and again, and to my wife as well for advice. 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
And the challenge is for me now, having had the lived experience, it's a lot clearer. I'm able to meet their needs a lot better and a lot more easily than I would have done historically. To be honest, I would probably be in the camp of clinicians if they asked me 10 or 15 years ago about ADHD. No, that's a condition of too much cereal, too much etc. But boy, has my mind changed.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So there's lots of advice to give in no particular order necessarily, but I would start with make sure that 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
for you to be able to understand your child and for 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 does no one any good.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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. The second thing I'd say is that there is a big overlap between ADHD and autistic spectrum disorder.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 and moving around a lot, and they're unable to stay still.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
They look vacant a lot of the time, staring into 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 need further support or even medication in that respect. The third thing I'd say is that
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
once 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 um 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
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
Massively. 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So there is Professor Tony Atwood, who now lives in Australia, but he's a British psychologist, I believe, who does a 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. You know, we're educated, get to go home and have time without that child there.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
You have a child with you, you know, 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
You have people around you who understand you or you build in mechanisms that allow you to regulate yourself as well.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
Sorry for having me. Thank you so much for the amazing work you're doing here as well with this. Really, really, it's been incredible. Honestly, you have a great amount of respect for me because it's an amazing and important effort that you're doing that will be impactful for so many people. And it's an avenue for them to understand the condition better.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 it may change their life. Thank you so much for your time. Thank you so much.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
With autism, autistic children and those with neurodivergence will struggle with the emotional regulation. They still 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, do yet, but getting towards that stage where he, you know, he's actually able to function and live.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So I, from a family perspective, you know, we're 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, becoming violent. So that was dramatic. For my own, in my own case, it was my, my wife. who saw that my own behaviors mirrored to some extent some of my son's.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So in his case, we have to homeschool him. He will struggle in an ordinary academic setting because of the vulnerabilities that come with his neurodivergence. So he'll be 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 he requires therapy.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So the teenagers are notoriously difficult when they're not neurodivergent, never mind with neurodivergent added factors. Absolutely. Both very scary to think about it and to see, you know, in terms of the uncertainty that's involved. I was an undiagnosed neurodivergent child, but I had no idea I was. But now I've got a child who has that, it's difficult.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
The neurodivergence is not always well understood by others. It's a relatively new emerging factor in the world. So some family, 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
For example, they don't come around to a house except that they give us 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. 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 saying hello?
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
That fits his self-esteem because he sees that, but he doesn't necessarily understand why. Because it is still 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
They're getting down to that naturally isolationist mentality that develops with autism and neurodivergence. So he struggled with developing friends to some extent or another.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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. 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, you know, his fixations.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
And 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. And 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
And it's difficult, again, 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
Absolutely. So he develops specific hyperbolicies 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 it with him, is that it can go unregulated and can become morbid at times. So let's take history as an example.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
He wants to learn about World War I and World War II and the battles and the trunks and all this military gear and everything else. 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So it's both a massive strength when that 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 as well. So it can't be left unchecked.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So if he's not getting away with a particular thing, he will begin to repeat himself, he'll be defeated a lot more, he'll become more aggressive, he'll raise his voids. He even recognizes himself, I'm going to have a meltdown. And he often says, I need to do something. He can't quantify what it is that he needs to do. So at that point, we need to put our mitigation in place.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So we have a weighted life beat, for example. We sit him down, we give him 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 five minutes, 10 minutes, 15 minutes, and it'll settle.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 it can hurt unwittingly, it hurts a bit more. So they can be difficult to manage, but they last about 20 to 30 minutes at times.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
But 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 a release before he goes back into a more neutral, emotional stance.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 was a watershed moment. We understand him. Even then, we wouldn't understand what was his behaviors.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
For us, as a family, keeping us together as a family, the biggest, most helpful support first came from the speech and language and occupational therapists. Because speech and language in particular, it's not just about talking, but it's about understanding him and understanding his behaviors and understanding how he expresses himself. So when we understood
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
the physical and verbal cues that were coming from him. And we understood this was a normal part of it. We were able to understand 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 idolatry parent.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
My God, why is this child being so disruptive to 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 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So I'm a doctor in the state to be known as a family medicine physician, 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 think in the last four to five years after my son's diagnosis of autism or ADHD.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 posts that he's about to have a meltdown or he's getting into a more emotional state.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
What I would say, though, is that, and 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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 famous to them in their language.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
And yeah, once he understood what was happening to him internally, and we understood as well, it was a whole different dialogue. And it has been since. And we know, as I said, we know where to put the mitigation in place as well.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
Absolutely. So in terms of the work that I do, I'm a primary care doctor and I'm 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 be serious?
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So, yeah, not necessarily through any activity. looking into advocacy, but I have, in that sense, 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.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
So being outspoken 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 clinician... will struggle.
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
Autism and ADHD 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's
Tony Mantor: Why Not Me the World
Junaid Hussain's Advocacy for Autism Awareness and Acceptance
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.