'It is us who do not understand you' Dr Zahilah's Wake-Up Call on Autism

Sinar Daily

Those words — spoken to an autistic child — sparked a turning point in the career of Dr Zahilah Filzah Zulkifli, a consultant pediatrician.   She shares a deeply personal story from her hospital rounds that challenged everything she thought she knew about autism. What followed was a journey beyond medicine — into the world of neurodiversity, social justice and listening to autistic voices themselves.   Watch the full podcast now on all Sinar Daily platforms. Let’s rethink how we see autism.   WATCH FULL VIDEO: FACEBOOK: https://www.facebook.com/sinardaily/videos/1510716419644985  YOUTUBE: https://www.youtube.com/watch?v=eq19YPJLXnM&t=121s  #LifeStylePodcast #AutismAwareness #Neurodiversity #DrZahilahFilzah #PediatricianPerspective #InclusionMatters #AutismAcceptance #SinarDaily

Transcript

00:00After I finished my examination, I stood up and I looked at him and I didn't know why I said it, but I said,

00:08I know you understand us very well. It is us who do not understand you.

00:15And he stood up and gave me a kiss.

00:17So I had this boy who was in my ward and when we were doing rounds, I came to him and he was really at his bed

00:26because he was attached to his fluid therapy and he was just gazing outside the window.

00:33So as I approached with my team and then we were, you know, my team started to present about him

00:41and this boy who comes with diarrhea, vomiting, he's autistic.

00:44Now all this time, he was just looking outside the window, not a blink of eye.

00:49So I went to the mom and I said, hi mom, I'm Dr. Zahila, as usual, so I'm going to examine him.

00:54And I also spoke to him, right? And the mom said, doctor, I am sorry.

00:57He will not be responding to you because he doesn't speak.

01:00And I said, it's okay. So I went on and examined him and whatnot.

01:04And then the mom at one point is like, doctor, maybe because I keep speaking to him.

01:09And then the mom said, doctor, I'm so sorry he's not responding to you.

01:13And I said, it's okay. I know he understands.

01:16And that was when the mom said, doctor, she got excited.

01:20Yes, he does understand Malay. He also understands English.

01:24And that was time, after I finished my examination, I stood up and I looked at him.

01:31And I didn't know why I said it, but I said, I know you understand us very well.

01:37It is us who do not understand you.

01:41And he stood up and gave me a kiss.

01:43And all those who are before that, he was just gazing outside the window, right?

01:48So that made me think, what if what we think we know about autism is fundamentally flawed, right?

01:58So that was when I went on to do my master's in autism, which isn't a medical pathway.

02:03And this is where I learned about neurodiversity and social justice movement and what exactly it's like to be autistic.

02:10Because we always see behaviors, right?

02:12And we judge them.

02:13We think that we can see autism because we see the behavior.

02:17And then sometimes you see kids because the idea is always about children.

02:20It's always about kids, you know, not having eye contact, kids who stims and, you know, kids who may be rolling on the floor.

02:27Tantrum, that kind of thing, right?

02:28You know, mentrum is always thought to be tantrum, yeah?

02:32And that's what we think we know.

02:36And therefore, what this realization coming from listening to participatory autism research,

02:44because we've always looked at research that is actually designed by neurotypical researchers, yeah?

02:50But this is led by autistic researchers, and it's different.

02:53It's different, yeah?

02:55And that's when I changed, and it continued to influence.

02:58How I work.

03:00So coming back to your question, neurodiversity is basically a natural variation of the human mind, right?

03:08There's no one way to think.

03:10There's no one way to be.

03:12We all process, you know, the world differently.

03:15If we can accept animals, there's so many kinds of animals.

03:18You're not going to say lion is better than a tiger, right?

03:20You're not going to say an orchid is better than a rose.

03:23But what is it when it comes to human?

03:25We think that there can only be one way.

03:28So in a nutshell.

03:29So in a nutshell.

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