How can we move from just 'autism awareness' to true acceptance and responsibility as a society?
In this deeply moving episode of Life & Style Podcast, we sit down with Dr Zahilah Filzah, a consultant paediatrician and Irin Putri, a mother, media personality and autism advocate, who shares her personal journey raising her autistic son, Raees.
Together, they discuss what it means to take a neuroaffirming approach — one that respects, listens, and adapts — and how small wins in parenting can bring big love and lifelong change.
Watch the full episode now on Sinar Daily’s social media platforms!
#SmallWinsBigLove #AutismAcceptance #NeuroaffirmingParenting #SinarDailyPodcast #SinarDaily #RaeesJourney #IrinPutri #DrZahilahFilzah #NeurodiversityMatters #ParentingAutisticChildren
In this deeply moving episode of Life & Style Podcast, we sit down with Dr Zahilah Filzah, a consultant paediatrician and Irin Putri, a mother, media personality and autism advocate, who shares her personal journey raising her autistic son, Raees.
Together, they discuss what it means to take a neuroaffirming approach — one that respects, listens, and adapts — and how small wins in parenting can bring big love and lifelong change.
Watch the full episode now on Sinar Daily’s social media platforms!
#SmallWinsBigLove #AutismAcceptance #NeuroaffirmingParenting #SinarDailyPodcast #SinarDaily #RaeesJourney #IrinPutri #DrZahilahFilzah #NeurodiversityMatters #ParentingAutisticChildren
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LifestyleTranscript
00:00Hi, Assalamualaikum and welcome back to all of our viewers of Sina Daily's Live and Style Podcast.
00:05So you guys are here back with me, Dr. Nur Hamza Zulkifli as your host.
00:10And today we're going to talk on a very, very interesting topic.
00:13This is a lot of misconception and also a lot of, I would say, opinions about this.
00:20So what we're going to touch today is on autism.
00:23What we hope to come out from our discussion today, from our podcast,
00:27is that to shift from the public, from just being aware of this condition,
00:33we hope that the public out there would try to accept and try to listen,
00:39try to understand to this group of special individuals.
00:43And together with me today, I am so blessed to have two experts, I would say, in autism.
00:50On my left hand most, I have Dr. Zahila.
00:53I don't think so, both of them need any introduction, actually,
00:58because both of them have such like thousands of viewers on their TikToks and also their IGs.
01:03Dr. Zahila Filza is, Zulkifli is a consultant, pediatrician,
01:08and passionate advocate for neurodiversity and autism acceptance.
01:12She's also the associate consultant at AT Autism from the UK.
01:16Welcome, Dr. Zahila.
01:17Thank you for having me.
01:18And on my left hand side, also, Irene Putri, she is a super mom, she's a mother,
01:25she's a producer, TV host, name it.
01:28And then also, she's also an autism advocate.
01:31She has shared her journey and also her experiences raising his son, Raiz,
01:38which is an autism.
01:39And I'm so, so happy to have you today.
01:41Thank you for making time for our podcast today for both of our panels.
01:45Thank you for the invitation.
01:46All right, so let's not waste any more time.
01:49Let's just dive into the matter.
01:51I'm sure there's a lot of burning questions.
01:52I also have a lot of burning questions.
01:54It's not something that I discuss every now and then.
01:57So first and foremost, of course, we're going to go to the expert, okay?
02:00To our consultant pediatrician, Dr. Zahila.
02:03Can you just share, actually, how did you start your journey from a consultant pediatrician
02:08and after that, more towards autism and what this term that we have,
02:13neurodiversity, neuroaffirming, it's all new terms for me, at least.
02:18So maybe could I just explain how was your journey?
02:21I mean, how did you actually continue and wanting to do about autism?
02:26Right.
02:26So I've been in the medical field for about 20 years now, yeah, but I became a specialist in 2010.
02:33So my journey in autism started in the clinic, in the pediatric clinic.
02:37But what I realized, I only truly learned about autism outside the clinical walls, yeah?
02:46When I spoke to autistic individuals, yeah?
02:50So I don't know if I have time for this, but if I were to share this story that actually
02:56was the thing that changed my perspective, yeah?
03:01So I had this boy who was in my ward, and when we were doing rounds, I came to him,
03:07and he was really at the, at his bed, because he was attached to his fluid therapy, yeah?
03:13And he was just gazing outside the window.
03:17So as I approached with my team, and then we were, you know, my team started to, you know,
03:24present about him, and he, this is boy who comes with diarrhea, vomiting, he's autistic.
03:28Now all this time, he was just looking outside the window, not a blink of eye.
03:33So I went to the mom, and I said, hi, mom, I'm Dr. Zahila, as usual.
03:37So I'm going to examine him, I also spoke to him, right?
03:39And the mom said, doctor, I am sorry, he will not be responding to you because he doesn't speak.
03:44And I said, it's okay.
03:45So I went on and examine him and whatnot.
03:47And then the mom, at one point, is like, doctor, maybe because I keep speaking to him, yeah?
03:52And then the mom said, doctor, I'm so sorry he's not responding to you.
03:56And I said, it's okay.
03:58I know he understands.
04:00And that was when the mom said, doctor, she got excited.
04:05Yes, he does understand Malay, he also understands English.
04:08And that was time, after I finished my examination, I stood up, and I looked at him.
04:14And I didn't know why I said it, yeah?
04:16But I said, I know you don't, I know you understand us very well.
04:20It is us who do not understand you.
04:25And he stood up and gave me a kiss.
04:28And all those were before that, he was just gazing outside the window, right?
04:32So that made me think, what if what we think we know about autism is fundamentally flawed, right?
04:42So that was when I went on to do my master's in autism, which isn't a medical pathway, yeah?
04:47And this is where I learned about neurodiversity and social justice movement and what exactly it's like to be autistic.
04:54Because we always see behaviours, right?
04:56And we judge them.
04:57We think that we can see autism because we see the behaviour.
05:01And then sometimes you see kids, because the idea is always about children.
05:04It's always about kids, you know, not having eye contact, kids who stims, and, you know, kids who may be rolling on the floor.
05:11Tantrum, that kind of thing, right?
05:12You know, menstrual is always thought to be tantrum, yeah?
05:16And that's what we think we know.
05:20And therefore, what this realisation coming from listening to participatory autism research,
05:28because we've always looked at research that is actually designed by neurotypical researchers, yeah?
05:33But this is led by autistic researchers, and it's different.
05:37It's different, yeah?
05:38And that's when I changed, and it continued to influence how I work.
05:44So, coming back to your question, neurodiversity is basically a natural variation of the human mind, right?
05:52There's no one way to think.
05:54There's no one way to be.
05:56We all process, you know, the world differently.
05:59If we can accept animals, there's so many kinds of animals.
06:01You're not going to say lion is better than a tiger, right?
06:04You're not going to say an orchid is better than a rose.
06:07But what is it when it comes to human?
06:09We think that there can only be one way.
06:12So, in a nutshell.
06:14I understand.
06:15So, meaning that because 1 plus 1 is 2, 2 plus 0 is 2 as well.
06:19So, we can't just generalise and make it all the same for everyone, isn't it?
06:22Okay, now let's move on to Irene.
06:25Okay, as a mother of, I mean, having an autistic child, how has that changed?
06:30Like Dr. Zahila explained in terms of professional, more of an expert point of view.
06:36How has it changed prior to, I mean, before Raiz was born and after Raiz was born?
06:41How would you have perceived autism?
06:45Has it been different from before and after?
06:47I had hardly any knowledge about autism before Raiz was born.
06:52Probably I watched in the movies.
06:54Probably there was a kid with an autistic character.
06:57But that's all I knew.
06:58I knew they had some behavioural differences.
07:04But that was it.
07:05But when I had Raiz, I made sure that he followed his milestones, actually.
07:10So, I made sure that he walked at the right age, he crawled at the right age.
07:16But then somehow at 2 years old, I noticed one red flag that was really, really big,
07:21which is he didn't speak.
07:23His communication skills were not at par, as a child should be at 2.
07:28So, I highlighted this to his pediatrician.
07:32And his pediatrician said, we observe for another 6 months.
07:37But within the 6 months, you have to, you know, let him socialise more, mingle with other kids,
07:41play more, and then we'll see.
07:44So, did all that.
07:46And after 6 months, there were not much improvements.
07:49So, that's when she referred him to a child psychologist who eventually diagnosed him with autism.
07:57But prior to that, I already did my own research because I asked questions.
08:03I googled everything.
08:04I asked, why isn't my son talking?
08:07Why isn't he looking me in the eye?
08:10Why isn't he responding to his name?
08:12And a few other signs.
08:14And all the answers that came back to me was, these are signs of autism.
08:18So, even before my son was actually diagnosed with autism,
08:23somehow those clues were given to me.
08:26So, when it was finally diagnosed, it didn't come as a big shock.
08:32At least, I was somehow mentally prepared for that.
08:36Alright, alright.
08:37So, from your experience, is there any misconception that probably you had had that misconception before?
08:44And now, when you are dealing with an autistic child,
08:47so you feel that this is actually some misconception?
08:50Maybe later, Dr. Zahila also can explain from a professional point of view.
08:54Is there any misconception that you think that the public has been pointing towards this group of individuals?
09:00Okay.
09:01When we say autism, the first thing they think about is tantrum.
09:05But, you know, the spectrum is wide.
09:07You know, some of them are, we can't really tell even that they have autism.
09:13So, because the spectrum is really, really big.
09:15Sorry.
09:16So, but for me, from my experience, Alhamdulillah Raiz, my son, he has never experienced a tantrum.
09:26Okay.
09:26Yeah.
09:27If he doesn't get something or something doesn't go his way, he'll just be really sad.
09:31He'll just cry and wail, but he wouldn't be like, you know, throwing stuff or, you know, making a lot of mice or anything like that.
09:39So, yeah.
09:40So, when it comes to autism, that's the picture that is being, you know, portrayed to the public.
09:48It's very typical autism.
09:50But, you know, the spectrum is why they are, they are really, they are really smart.
09:56They have gifts, they have strengths if we know where to tap.
10:01Yeah, like Raiz.
10:02She, he's multi-talented.
10:03I've just heard that she did some, I don't know, I would say duet or something with Masha, right?
10:08About for the song of Fening Rindu on her TikTok, isn't it?
10:11Yeah, yeah, yeah.
10:12Okay.
10:12So, now let's hear from Rata Zahila regarding the common misconception that the public has.
10:16Because, like what Irene said, sometimes when the child does not have the proper gaze, they don't look at you, when you, when they don't reach certain milestone, most of the time, we always have that perception, oh, oh, your child must be autistic.
10:29Let's, I mean, you need to bring your child to see a child psychologist.
10:32So, what do you have to say in terms of that, Dazahila?
10:37Well, in terms of misconception, there is a lot.
10:41There is a lot.
10:42And I hold on those, those misconceptions for a very long time.
10:46Yeah.
10:47But, and the thing is, we still have those misconceptions.
10:52I don't think anyone would understand an autistic unless an autistic themselves.
10:59Sometimes it's easy to say, oh, you know, I was trained in this or I parent a child, you know, and we think we know.
11:05We know to a certain extent, right?
11:07But a lot of the things that we know is very, from the outside.
11:13It's like from the outside looking in.
11:16That's why I say a lot of the things that we think we can see autism, but it's actually invisible.
11:21So, the only way to understand autism truly must be through the autistic community.
11:29That's the biggest change.
11:30That's when I realized, oh my God, there's a lot of misconception.
11:34And there's a lot of misunderstanding.
11:35And it's an injustice, right?
11:38So, if we think about, say you were saying about an eye contact, for example.
11:44For a lay person, when you look at someone who's not having eye contact, when the rest of us have eye contact,
11:51we think that that person is not listening, being disrespectful, disengaged, right?
11:57But an eye contact, when we think about eye contact, when we ask the autistic community,
12:02why is it that they, it's hard for them to give an eye contact?
12:06And sometimes, just to be clear, it's not always not having eye contact.
12:10It's a variation in how the eye contact is.
12:13Because for some autistic, it is an intense eye contact, right?
12:17So, this is because, especially those who do not have, you know, do not give you eye contact,
12:24they're listening.
12:25And in fact, they listen so much better when they're not looking at you.
12:29Because you've got to understand, the way they experience the world, it's not like us, you know?
12:34As we are speaking now, Dr. Hamiza, right?
12:36You hear my voice.
12:37And I am very aware of my voice too, right?
12:39But there are, if we take a moment of silence, there are other sounds in this room.
12:45And to them, it is all at the same volume, for many of them.
12:49And if they were to have to process that, and at the same time, have to look at you,
12:53and when they look at you, they see so many things, right?
12:57There are so many things that have to be processed at the same time.
13:00So, the best way is to avert their eye, so they don't have to process this visual,
13:05but so that they can just give you that attention and try to understand what you're trying to say.
13:10So, imagine someone who is struggling with that, and we say, look at me, look at me.
13:15And they're already struggling.
13:16They try to focus on what you're saying, and then here you are, trying to make it more difficult.
13:21But I understand, for many people, it's well-meaning, because they think that you need to have eye contact.
13:27But eye contact is not just about autism.
13:29There's a lot of other cultures out there, some African cultures, Afghans, who do not give eye contact, right?
13:35Yeah.
13:36Yeah, okay.
13:37So, that's actually a different perspective that I would say, because we always have that misconception that you have to listen.
13:43But we don't understand, like Dr. Zaila said, from their point of view, because they are processing a lot of things,
13:47and we're just adding more stress to them, which is very, very, I would say, injustice to them, isn't it?
13:52If I could just add a bit, among the things that were said to me about my son is,
13:57I think he has hearing issues, because he's not looking at us when you call his name, but actually not.
14:03He needs more discipline when he does things that, you know, probably make a mess or something,
14:08because he needs more discipline.
14:10And then, probably like, he needs to have more things to do.
14:14He's bored.
14:15Yeah.
14:16Oh, common. That's common.
14:18And then it doesn't add stress to the patient itself.
14:21It's adding stress to the family itself, because it's not very easy to manage,
14:25and somehow you are telling them what they need to do, but they have already enough on their plate, isn't it?
14:30And it's not right.
14:31Yeah, true.
14:32Because it doesn't, you think that's what it is, but it's not.
14:35Yeah.
14:36Because some people are, they want to be the expert, but they're actually not an expert at all, isn't it?
14:42So, I just want to talk about Dr. Zaila.
14:44How can you actually educate people?
14:46Because now we're talking about the neurodiversity, neuroaffirming.
14:50How would I actually, because rather than focusing, when we talk about autism,
14:55we always say, I mean, in a medical point of view, samsak is like a disease.
14:59And like, if I, as a medical doctor, I would say, disease needs to be treated.
15:03So, in the mind of the public, they will say, this is a disease, and we have to treat it,
15:07and we have to fix it.
15:08I mean, they are very focused on the fixing part of it.
15:12But how do you educate the public towards the approach that prioritise in terms of respect?
15:17Like, actually, we need to make sure the public respect these autistic individuals,
15:22understand them, and also support them instead, rather than making all these assumptions and also judgments.
15:28Get to know an autistic.
15:30I think that's important.
15:31But also, even when you know an autistic, if you're still looking from the lens of, you know, the typical lens,
15:39neurotypical lens, how you see it, you will not understand it, right?
15:44And I think that's when neurodiversity demands humanity in us, right?
15:51Because when we talk about it, and this is the other, if I could just add, when we talk about empathy, right?
15:55Yeah.
15:56Another misconception is that autistic lacks empathy.
15:59But what I've learned is that we lack empathy.
16:01We lack empathy.
16:03What does empathy mean?
16:04Empathy means it's putting yourself in that person's shoe.
16:06But this is not what's happening, right?
16:08You're still looking at them from your shoe.
16:12You think you understand.
16:14You're dictating this and saying all those things to you, Irene, right?
16:17But this is a common thing parents tell me.
16:19But in the beginning of every parent's journey, it's always that, that denial, listening to all these things that are being said to them.
16:29But as they realize, as you live yourself, because it's not an object for you to handle.
16:34It's not an object for you to manage.
16:36It's your loved one that you live with.
16:38So the way you look at it is different.
16:40And those who do not have that lived experience may not have the kind of experience you have, right?
16:46But coming to, gosh, sorry, I looked at the question.
16:51So how do you actually, how the public, how you want to make the public to go more, other than fixing, I mean, take the focus away from fixing the problem, I mean, autism, but to understand them and adapt to their condition.
17:07I think one of the ways that when I think about this, right, I think there's a lot of double standard.
17:12Okay, let me just give you an example.
17:14We spoke earlier about tantrum, right?
17:16The thing is, a lot of children have tantrum, yeah?
17:19But tantrum is very different from an autistic meltdown, right?
17:23A tantrum is when you want to have something.
17:26That's a secondary gain.
17:27Say he's holding an iPad, he's watching it, and you take it away, and then he starts crying, right?
17:32He holds, you know, he stomps his feet, and he screams.
17:35That's tantrum, because that's a secondary gain, which is he wants his iPad back.
17:39And there is an audience, which is the mom who's holding, perhaps, the iPad.
17:43But meltdown is different.
17:45Meltdown does not require an audience, yeah?
17:49Meltdown is not something they can control, yeah?
17:52It is because of sensory, yeah, being overwhelmed with all the sensory input.
17:58It could be due to being overwhelmed with emotion, yeah?
18:02And loss of autonomy, for example.
18:06Suddenly, you imagine someone who does not have choice and control, and you have people talking about them, this, that, and all that, and it's all misunderstanding, and you can't respond back.
18:19You know, and when you talk about meltdown, it's not something like, again, it's not something that you want to correct, something that you want to punish or discipline, but you want to empathize with.
18:32And if, and now, if we just think about emotion, and we think about our behavior, I see so many people, adults, who also scream, who throw things, you know, sometimes it can be, even in the hospital, back in those days, where you would throw your ticket holders, yeah?
18:52Why is that accepted?
18:54Sure.
18:55You know, when you see those kind of behavior, you say, oh, he had a tough day.
18:59Oh, he's like that.
19:00You know, he's had a tough day, and, you know, there were so many things on his plate, you know, all this, you know.
19:07But when we see an autistic, oh, that's autism, right?
19:12That's double standard.
19:13So, and that is why neurodiversity brings us to think about how we look at these assumptions and challenge that narrative.
19:23Challenge that narrative that, hey, take a step back, think, maybe you're not getting this right, you know?
19:31All right.
19:31Okay, yeah, because we always feel that we are the neurotypical.
19:34Like, for example, maybe I label myself neurotypical, but I think prior to this, we just had a conversation with Dr. Zahila.
19:39Yeah, you said, maybe you think that you're neurotypical, but you might be one of the, I mean, because it's a spectrum.
19:44You can be a neurodiversity, I mean.
19:46Because it's the way we think, right?
19:48The way we experience the world is not what you see, because the one you see, the way we talk about in children is very stereotypical.
19:55Yeah.
19:55You know, that's a very stereotypical.
19:57But, I mean, I shared with you that there is an organization called Autistic Doctors International, right?
20:03Autistic Doctors International, where it is a group of autistic doctors in the UK.
20:09And some other countries, yeah?
20:11And it's led by an anesthesiologist who found out she was autistic after her son was diagnosed.
20:18It runs in families.
20:20Yeah, it's genetic.
20:22So, I don't know if people like to hear this, right?
20:25Because the way I see it, because it's not a disorder, it's not a disease.
20:30If a child is autistic, very likely one or either or both of the parents are autistic too.
20:36But they are on a different spectrum.
20:38Yeah?
20:39Yeah.
20:40Something to know about that.
20:41An anesthesiologist, yeah?
20:43I mean, so, you, I mean, we want to correct the misconception, not just, because we always have that autism, they won't do very well.
20:49They are, I mean, at a certain level of their, they are mentally challenged.
20:52But, like Dr. Zaila said, we do have, who are, I mean, anesthesiologists who led the whole autism community.
21:00So, which is very, very great, yeah?
21:02Okay, next to Dr. Zaila.
21:03I just want to ask, in terms of the environment, I mean, from your point of view, from your journey, from your experience, what is the suitable environment for an autistic child to thrive, actually?
21:15And how we can, we, the non-autistic, can help them in that way, I mean, for us to adapt to that environment?
21:22Okay, just to start off, right, a lot of people think, you know, when, I mean, I am not saying that early intervention program is not important.
21:31I'm not saying speech therapy or occupational therapy is not important.
21:34I hope that's, you know, that gets across, yeah?
21:37I think what sometimes we're missing is that we often think that autistic behavior is a reflection of an internal state.
21:46To a certain extent, yeah?
21:48But majority of the time, it is because of the interaction with the environment.
21:52If, for example, you know, the thing, I think you mentioned earlier, right, you said about you were looking at the developmental milestone.
22:01Because we always, when we talk about autism, or any other neurodivergence for that matter, it's always about comparing them to the typical milestone.
22:12And this is when it gets a little blurry for most people, because I hear a lot of people say that parents are denial.
22:21Or are in denial.
22:22But the thing is, parents do sometimes see, and this is the thing about autistic, they have spiky profile.
22:27So the things that other people may not be able to do, they can do.
22:32And the thing that other people, it's easy for other people, it's hard for them.
22:36So what parents see and what professionals see is different, you know?
22:40So if we celebrate that this spiky profile, and also across time.
22:45So I'll give you an example.
22:46A child may be doing, say, whatever you're doing.
22:50Let's say you're working on something, and he's doing it.
22:52And suddenly you feel like at another time, he's not doing it.
22:55And I say, why are you not doing it?
22:57You know you can do it.
22:59I know you can do it.
23:00And why is it that this time you refuse to do it?
23:02It could be the environment.
23:04The environment change.
23:05So we talk about the environment, how it influences the autistic.
23:10And this is what we learn from autistic adults.
23:13We cannot understand.
23:15I often advocate for if we want to help and support autistic children and teenagers,
23:22we must listen to autistic adults.
23:24And you all refer to me as an expert.
23:26I wouldn't call myself an expert.
23:28The expert is the autistic community.
23:29So, yeah, I look at it in this acronym of SPEL, because I train people in that.
23:36So SPEL is actually a way of organizing the environment.
23:43And it is co-designed with autistic researchers and autistic professionals.
23:47So when we talk about structure, it's about providing predictability.
23:51If suddenly you say, hey, let's go here.
23:53And they already have a structure in their mind, but out of nowhere, you tell them that,
23:59okay, this needs to be done instead.
24:00It's like having a precise mind in a chaotic world, right?
24:06So they're very precise in their mind.
24:08And they pay attention to detail.
24:09So if you don't provide structure, then that's going to be very hard on them.
24:15Positive approach, attitude, and expectation.
24:17When you see a non-speaking, do you think they're not smart?
24:20So people think, so we see, you try and do speech therapy for some time,
24:26and then they're still not speaking.
24:28And then what I see, that's most parents say, he can't speak.
24:31I just have to guess what it is that he wants.
24:34But there are other means.
24:36And now we have what we call augmentative and alternative communication.
24:39I recommend this across all spectrum.
24:42Because what we understand from autistic adults is that even when they can speak,
24:47you know that they can speak,
24:48there are times that they just lose it.
24:51Sometimes they have autistic burnout.
24:53They suddenly cannot speak.
24:55You know, they just lose the words for it.
24:57And the other thing, E is empathy, empathize.
25:02Empathize in terms of their sensory experience.
25:04So when for a sensory experience and their communication, for example,
25:08if you have an adult who's not speaking and then you're not providing,
25:12now you can have the AAC, the Augmented Automatic Communication, in an app
25:15where you can point to pictures or you can type and it generates speech.
25:20You know, imagine even for a child who when every time they cry,
25:25people assume he wants milk when actually he wants vitogen, for example.
25:28How would you know if it's not in the house?
25:30Unless they can point, you can use communication board.
25:33Low arousal means SL, the other L is because there's so many arousing things around us,
25:39like lights, sounds and all that, people, right?
25:44It's to keep the environment low arousal.
25:46But it's not just that.
25:47It's not just the environment.
25:48It's also about our communication and interaction to them, right?
25:52Imagine when someone is having a meltdown and there you are.
25:55Why are you behaving like this?
25:56When will you stop?
25:57Have I not teaching you?
25:58You make it worse.
26:00You know, it adds to the stress and it becomes longer.
26:03And then people get stressed.
26:05Other people get stressed.
26:06Everybody gets stressed.
26:08And then they call it challenging behaviour.
26:11But when exactly it is, it's a distressed behaviour, right?
26:15And the last one is L-Link.
26:17It's basically working with everyone.
26:19And I think we must give credit.
26:21So in the UK, in the national autism training programme,
26:23they call parents, they train parents and they call them experts by experience.
26:29People who support autistics, educators, teachers, therapists, doctors,
26:34must work collaboratively with parents.
26:36You must listen to parents.
26:38But more importantly, of course, to listen to the autistic community
26:40because parents don't always, we don't always understand it, yeah?
26:44Because we're still looking at it from a different lens.
26:46So in a nutshell, that nutshell is too long.
26:49No, it's a good nutshell.
26:50So basically, it's this, to have a conducive environment for the children,
26:56for the autistic individuals to thrive.
26:58I mean, we cannot expect, like you said, empathy.
27:00We cannot expect them.
27:02I mean, we always want them to be in our shoes,
27:04but we never try to put ourselves in their shoes,
27:06trying to understand what they want, actually, rather than what we want, right?
27:09Okay, and I'm going to Irene, from your experience, okay,
27:14from as Ra'is grows older, how does it, I mean, for Ra'is and also for you,
27:19the pressure to fit in?
27:20Because I think Malaysia probably not as very well aware and educated,
27:26I mean, in terms of this as in the UK.
27:28Okay, but I think slowly we're getting there.
27:32How is it, like, the pressure that you have initially to make probably your,
27:35the closest from their families or from your close friends,
27:38and then for Ra'is to fit, to try to be like a normal boy?
27:44I mean, how is that?
27:45And can you just share in terms of that?
27:47Okay, because what I do is, right now,
27:53in terms of autism advocacy,
27:55the main reason is for me to help the society understand autism better
28:01because I know that's where the future is where Ra'is will grow
28:06and he'll be an adult soon.
28:08So he needs to be in an environment where people understand him as well.
28:11So what I do now is advocacy through my sharing on social media
28:16and through podcasts like this.
28:19Yeah, it's part of my, I want to say,
28:22it's like my jihad, in a way,
28:23to help raise awareness.
28:26So it's all part and parcel as for Ra'is,
28:29because him and other autistic individuals,
28:34because for him, Alhamdulillah, he has the gift in music.
28:38So I foresee that that could be where he will be able to,
28:42you know, one day be independent,
28:45probably get his own income via music.
28:47So besides advocacy, I also, right now,
28:52I expose his talents, his journey.
28:55Hopefully, he will have a strong fan base.
28:59You know, we don't know.
29:00We start early so that he has a following,
29:03so that in the future,
29:04he will be, people will know him
29:07and probably he has a strong following
29:09and it would help in his future career,
29:13probably in music.
29:14Like, that's the path that is being created right now for him.
29:21Yeah, so, and for me,
29:24to have him, you know, to be like a normal child,
29:28it's not something that I aim,
29:31because he just needs to be himself.
29:34He just needs to be himself
29:35and it's others that need to understand him.
29:38Yeah, he's just special in his own ways, right?
29:40And all of us are special in our own ways, isn't it?
29:42So it's like, two days ago,
29:45I brought him to an event.
29:46It was very crowded, very noisy,
29:49but he was fine.
29:50And he was happy to be there
29:52and other people were not bothered
29:54by him just, you know, walking around.
29:57And so he didn't bother anybody,
29:58that's one thing.
30:00And others were not, I'm going to say,
30:03bothered that he was walking around the room.
30:06So as long as he's not bothering anyone
30:08and he's happy, I'm fine.
30:10Okay.
30:11Yeah.
30:11Maybe I can just share a little bit,
30:13how do you manage in terms of like,
30:16handle the moments when Raiz express himself
30:19in, not in a very appropriate manner,
30:21maybe, maybe some tips and tricks
30:23for the parents out there.
30:24How do you manage that?
30:27Okay.
30:27If I could share one incident.
30:30Okay.
30:31It was the first time that me and Raiz
30:33were involved in a shoot.
30:35So it was, you know,
30:37it was, you know, it was,
30:38the venue was at a bungalow
30:40that the production rented for the shoot.
30:43And somehow the shoot extended
30:45until probably like past 10, past 11.
30:48And he has a very specific timing
30:50where he should be home by 11.
30:52All right.
30:52At least.
30:53But the shoot was still going on
30:55and up to 11, 30, 12.
30:57And I was like,
30:58okay, Raiz,
30:59just a bit more,
31:00just a bit more.
31:01Because he was,
31:01he was playing the piano
31:03he was in a way
31:04one of the highlights of the show.
31:06So if the main character
31:10isn't cooperating,
31:11the whole thing would be,
31:13you know,
31:14go down the drain.
31:15So he was very patient
31:18at first.
31:21He needed to take five,
31:22let him take five
31:23and then continue.
31:24But there's just one instance,
31:27I guess his patience
31:28was wearing thin
31:29and he was just like,
31:31I'm not going to do it.
31:33He just took my bag
31:35and he,
31:36he,
31:37yeah,
31:37he just took my bag
31:39and he wanted me to follow him.
31:40And he started crying
31:42because he doesn't have
31:44meltdowns or tantrum,
31:45but he cries.
31:46He was really,
31:47really crying.
31:48He was not,
31:48no longer cooperating that time.
31:50So I told everybody there,
31:53can you just give me a moment?
31:54Just calm him down.
31:55So, yeah.
31:57So we just,
31:57I put him aside.
31:58I talked to him nicely
31:59because probably
32:01some parents would be like,
32:03forcing him like,
32:05just please,
32:05one more time,
32:06one more time.
32:06But for me,
32:07it's like,
32:08we have to slow talk.
32:09Yeah.
32:09So when I tried to slow talk with him
32:11and eventually,
32:13he managed to finish the whole.
32:15Yes.
32:17Excellent.
32:17Yeah.
32:18But that's what,
32:18I mean,
32:19I think Dr. Zahilar has mentioned,
32:20we are trying to force them
32:21because he already has
32:22his own structured program
32:23in his mind.
32:24At 11,
32:24he needs to be at home
32:25and sleep
32:26like most of us should do.
32:27But sometimes,
32:28he's trying to stretch them
32:29beyond whatever
32:30they're supposed to do.
32:31So they would have this
32:32and we are blaming them
32:32for behaving like that,
32:33isn't it?
32:34So which is very,
32:35very much wrong.
32:35Yeah.
32:36But what I learned from that
32:37is if there are any,
32:39any engagements for shoot
32:41or anything similar to that,
32:44I would put a stop to them.
32:46I said,
32:47maximum he could go is 10.
32:48Okay.
32:49Lesson learned.
32:50And having a proper structure
32:51and if in those events,
32:53the organizer could actually
32:54give beforehand,
32:55like how it's going to be,
32:57like what time is going to come in,
32:58what's going to happen here in me,
33:00that would be even better.
33:01Because I think
33:01one of the other things
33:02that we misunderstand
33:04about meltdown
33:07or autistics in general
33:09is that
33:09there's this thing called
33:12autistic masking
33:13or autistic camouflaging.
33:15Okay.
33:16You see from the outside
33:17that everything is all right.
33:19Yeah.
33:19But inside it is not.
33:22So meltdown
33:23is not always externalized.
33:25Okay.
33:26It can be internalized.
33:27And masking means
33:28like sometimes
33:29you force yourself
33:30to behave in a way
33:32that you think
33:33people would accept you,
33:34meaning a neurotypical way,
33:36right?
33:36Or forcing yourself
33:38through sensory
33:39overwhelming environment
33:42and trying yourself
33:43just a little bit more,
33:44just a little bit more,
33:45just a little bit more.
33:46But the meltdown
33:47may not be externalized.
33:48It can be internalized.
33:49internalized.
33:50And why this understanding
33:51is important,
33:52yeah?
33:53Because what we learn
33:55is that 70% of autistics
33:57have at least
33:58one mental health challenges
33:59and 40% have at least two.
34:02Yeah?
34:03And I have,
34:05every time I do training,
34:06right?
34:07Yeah?
34:07it's different when
34:08there are children
34:09and then they're growing up
34:10and things change,
34:11yeah?
34:13Many of the parents
34:14have also shared
34:15and also from my practice
34:16that there are many
34:18autistic children
34:20who struggle with
34:21depression and anxiety,
34:24have suicidal thoughts,
34:26yeah?
34:27So,
34:28but a lot of them
34:29did not see
34:29that this was coming
34:30because it looks fine
34:32from the outside.
34:33Yeah?
34:34It looks fine
34:34from the outside
34:35because they're holding on
34:37until one point
34:37when they can't hold on.
34:39And the thing is,
34:40a lot of time,
34:41what we learn
34:41from the autistic community
34:42is that whenever
34:43there's a meltdown,
34:44yeah?
34:45Whether it's externalized
34:46or internalized
34:47or whether it could be
34:48about not wanting
34:49to continue with something,
34:51what follows through
34:52is guilt and shame.
34:55And so,
34:56that is why
34:58in the National Health Service,
35:01it's like Ministry of Health
35:02in Malaysia,
35:02in the UK,
35:04they partnered with
35:05Act Autism
35:06and Anna Freud
35:07of University College London
35:08to train
35:10the mental health professionals
35:11through understanding autism
35:15from the inside.
35:17Okay.
35:18Yeah?
35:18And I think
35:19that's very crucial.
35:20And again,
35:21that's where
35:22misunderstanding happens
35:23because we're just
35:24looking at superficial,
35:26what's superficial.
35:27And therefore,
35:28when we think about something,
35:29when you see a behavior,
35:30imagine the iceberg.
35:32What you're seeing,
35:33let's say someone
35:33is throwing things
35:34or someone is crying,
35:35someone is that.
35:36What we see is that,
35:37oh, because of this,
35:38because of that.
35:38But beneath it,
35:40there's a lot of other things.
35:41Unmet needs,
35:43chronic loneliness,
35:44trauma,
35:45and whatnot.
35:45Yeah.
35:46Okay.
35:47There's a lot of,
35:48I mean,
35:49we could go on
35:50and on and on on this,
35:51but I think I've got a cue
35:52that we're supposed
35:53to almost wrap this thing up.
35:54So before I end this,
35:56for all those,
35:57our audience out there,
35:58the parents,
35:59not just parents,
36:00in terms of the
36:01healthcare professionals,
36:03like for me,
36:04I mean,
36:04those who are managing
36:05autistic child
36:06or even the public
36:07who probably,
36:08you can see a lot
36:09of misconceptions,
36:10what are the last words,
36:12a few words,
36:12and also some advices?
36:14Maybe Dr. Zayda
36:15can start first.
36:17Autism is a disability.
36:19Yeah.
36:20Of course,
36:21it's a difference,
36:21but it's also a disability
36:23because when the environment
36:25does not cater
36:26to your brain,
36:28yeah,
36:28it's disabling.
36:31And I think
36:32what is important
36:33for us to move forward
36:34is to remember this.
36:37It always takes
36:38two to tango,
36:39right?
36:40So when a communication
36:42and interaction
36:42break down,
36:44when you see,
36:44oh,
36:44this is not C,
36:45they're not interacting
36:46our way,
36:46they're not communicating
36:47our way,
36:48you know,
36:48they are already
36:48doing all the work.
36:50They go to therapy,
36:51they go,
36:52you know,
36:52they suppress themselves
36:54to the extent
36:54of their mental health,
36:56yeah?
36:56The question is
36:57because it takes
36:58two to tango,
36:59what are we doing?
37:00Yeah?
37:01So you can't,
37:03to me,
37:03if you want to advocate
37:04for autistics,
37:07you must,
37:07we must advocate
37:08for a meaningful change
37:09in the environment
37:10and we are the environment.
37:11Yes.
37:11Okay,
37:13thank you so much,
37:14and how about Irene,
37:15your last few words
37:16to the public?
37:17Okay,
37:18I hope we can make
37:20the environment
37:22better for autistic children
37:24or autistic individuals
37:25to understand them,
37:27to,
37:28yeah,
37:28as what Dr. said,
37:30not through our lenses,
37:32but we think,
37:34try to go into their world,
37:35go into their world
37:36and somehow rationalise
37:38why they are being,
37:40or behaving that way
37:41instead of,
37:42hey,
37:43he's a naughty boy.
37:44Yeah,
37:44so yeah,
37:45try to understand better
37:46and also,
37:47of course,
37:47give support
37:48to other parents also
37:49because parents
37:50with special children
37:51really,
37:51really need
37:52a lot of support.
37:54Right,
37:54thank you,
37:55thank you so much
37:56to both of our panels.
37:58It's such a very,
37:59very,
37:59it's a great discussion.
38:00I mean,
38:00I could go on further more,
38:02but I really want to know
38:03more about autism,
38:03but just because we have
38:05very limited time,
38:07thank you as a nutshell,
38:08as a conclusion,
38:09it's very important
38:10regarding the neurodiversity
38:12because they are special
38:13in their ways
38:14and we are also special
38:15in our ways as well.
38:16So we just have to respect,
38:18understand,
38:18and try to adapt
38:19rather than wanting them
38:20to change their way
38:21to fit to our shoes
38:23instead of we being
38:24in their shoes.
38:25So,
38:26to all our audience,
38:28don't forget to follow
38:29all Sina Dili's social media
38:30platforms
38:31and download Sina Dili's
38:32new and improved
38:33mobile applications.
38:34So I'll see you guys
38:35next month.
38:35Insya Allah.
38:36Assalamualaikum.
38:37Bye.