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This is the referral with me,

0:33

Dr. Karun. Now, if you're interested in medicine

0:36

or science, or are just interested

0:38

in improving your own health, you're in the right

0:40

place. Every week, we're going to be debunking

0:42

myths, having expert insights

0:44

from guests, and also giving you science-based

0:47

strategies to make

0:48

you healthier and hopefully happier and

0:50

feed your curiosity. In this week's episode,

0:52

we're talking about autism. Autism

0:55

is a lifelong neurodevelopmental condition

0:57

which affects how people interact and communicate

0:59

with the world. Current estimates suggest that

1:01

more than 1 in 100 people are on the autism

1:04

spectrum. So there are millions and millions

1:06

of people who are either autistic or who

1:08

have autism spectrum disorder. People

1:10

who have autism or who have autism spectrum

1:12

disorder are known as neurodivergents.

1:15

They literally have a brain that

1:17

is different in structure and anatomy. If

1:19

you know someone with autism, you may have noticed

1:21

that they can learn, behave, communicate,

1:24

and even interact with the world completely

1:27

differently to other people. As I mentioned, autism

1:29

is on a spectrum, so some people can

1:31

require a lot of help and specialist

1:33

care, and some people you may not be able

1:35

to tell the difference between someone with autism and

1:38

without autism. For the first time on

1:40

this podcast, I'm joined by not one,

1:42

but two guests, David and Carrie

1:45

Grant. They have three children of their own,

1:47

all of whom have been diagnosed with

1:49

autism. Now both of

1:50

these guys are BAFTA award-winning broadcasters.

1:53

You may have heard them or seen them in the

1:55

hit show Pop Idol where they're well-known

1:57

vocal coaches. You are considered less than a human being.

1:59

less than, so you have to be better

2:02

than to be perceived as equal

2:04

to. Please don't tell me

2:07

you're neurodivergent as well.

2:09

The onus is on the person

2:11

to change when actually it's the

2:13

world that needs to change. So I

2:15

grew up listening to

2:18

respond with the kids

2:20

that we have. I've had to learn

2:22

to listen to understand.

2:25

And a bit later I'll be answering your questions using

2:28

all the knowledge and experience I've gained working as

2:30

a doctor in the NHS for over 10 years.

2:33

Now if you've got your own burning question you

2:35

want in this show, feel free to get in touch

2:37

at thereferralpod.com. And if you're

2:39

not satisfied with that and you want even more

2:41

deep dives into your interesting questions

2:44

and to feed your

2:44

curiosity, you can subscribe to the referral

2:47

plus on Apple Podcasts.

2:53

David and Cary Grant. So

2:55

I've already introduced you but tell me and tell

2:57

our listeners and viewers a little bit about yourselves.

3:01

My name is David Grant. I've been

3:04

in the entertainment business for

3:06

four, five decades now starting

3:09

off first as a singer, then a songwriter,

3:11

then vocal arranger, producer, vocal

3:14

coach, then talent

3:16

show judge, presenter. And

3:19

most recently, Cary

3:21

and I have been

3:22

advocating for

3:25

our children and our children are children with special

3:27

needs and that's become sort of the

3:29

driving focus of our lives.

3:32

Yeah, so I've done pretty much the same

3:34

career as David. He's had a few more hits than I've had

3:37

by a long shot. But my passion

3:40

has been about advocacy in health

3:42

education and social care. So I've

3:45

been working in that field for

3:47

about two decades or actually

3:49

three decades now. Yeah, something

3:51

I really, really care about.

3:53

And you're both very busy people with

3:55

so many different things going on

3:57

in your life, various projects, but you've

3:59

also got

3:59

got three children who have autism.

4:02

Tell me how that is

4:04

being parents and living your lives

4:07

with this every day. Yeah. Well,

4:10

we've got a neurospicy family. We've got

4:12

four. Neurospicy. Yeah, neurospicy.

4:14

We're all neurospicy. So

4:17

we have four children, three birth, one adopted.

4:20

As you said, three

4:22

have autism and or ADHD

4:25

and all the disses, the dyslexia,

4:27

dyscalculia,

4:28

dyspraxia. Yeah, lots

4:30

of disses. And then our

4:33

youngest, our adopted son, he

4:35

has a thing called DMDD, which is disruptive

4:38

mood dysregulation disorder, along

4:40

with ADHD. So there's a lot

4:42

in there. And I suppose in

4:44

answer to your question, what is this

4:46

like day to day? Well, I suppose

4:48

when we started with our family,

4:51

our oldest is 28, because 28, 21, 17 and 13. So big spread. I

4:57

think you set out on your parent journey

4:59

thinking, right, this is how parenting is going to

5:01

be. And David and I had very clear

5:03

ideas about that. And then

5:06

we found out that wasn't to be the case. And so

5:08

we had to shape shift into

5:10

being the parents that we needed to

5:13

be for our children, which means four

5:15

different ways of parenting, actually. There's a

5:17

lot of overlap, but there's also being, you

5:19

know, each child specific needs need

5:22

to be met. Also, our children are mixed race. Also,

5:24

our children, three of them are trans on and

5:26

or non binary. And so there's,

5:29

there's a lot of intersections happening

5:31

that we have to be able to respond to in

5:33

ways that are helpful

5:36

to our children.

5:43

So a lot of you asked me how I balance

5:46

brainstorming for my videos and writing scripts,

5:49

planning my book chapters, my newsletter,

5:52

stuff to do with my life as a surgeon

5:54

as a doctor in the hospital. It was a struggle, but

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recently I've been using Notion AI

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and it's essentially a workflow productivity

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tool. I've never used these before, but it's

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really simple. It's beautifully designed and it

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and I can juggle several projects simultaneously

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and I can write faster. It gives me

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notionai at notion.com

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slash referral.

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Why were medieval priests

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so worried that women were gonna seduce men

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with fish that they'd kept in their pants? Who

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was the first gay activist?

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in the cabbage mean? I'll tell you

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it's not a cookery technique, that's for sure.

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History Hit.

7:29

So, I mean, you mentioned three of

7:31

your children have autism. And

7:33

obviously, the autism is a spectrum

7:36

from mild to severe.

7:39

And actually, I guess a lot of people can

7:41

easily paint someone with autism as, okay, you've got

7:43

these fixed features. But everyone's an individual,

7:45

and we're all wired in slightly different ways.

7:48

Even autistic people have

7:50

their own idiosyncrasies,

7:52

as it were. Do you find that

7:55

there are significant variances

7:57

in those three children as well, in terms of how different?

7:59

they are in how they manifest

8:02

their characteristics with autism?

8:05

Such a good question, because that is exactly

8:07

what we find. You know, there's

8:10

an old saying, if you've met an autistic person,

8:12

you've met an autistic person, you have one,

8:14

yes, you've met one autistic person. That's

8:16

all you've met. One autistic person. Our

8:18

three children, the way that

8:20

their autism presents is entirely

8:23

different. Also, you know, the things

8:25

that they're anxious about are entirely

8:27

different. The way that they interface

8:30

with the world is entirely different.

8:32

And I think there's a uniqueness to autism

8:35

that people will look at somebody and

8:37

say, oh, that person is like that because they're autistic,

8:39

or that person is autistic, and therefore they're

8:42

not going to be able to do this, that and the other. For instance,

8:44

when our second child was

8:46

in school, we would

8:48

say to members of the primary school

8:51

that they have an autism diagnosis and we'd be

8:53

told, well, the diagnosis is wrong because

8:55

they make eye contact. And if they're autistic,

8:58

they couldn't make eye contact.

8:59

Whilst it's true, some people in the spectrum

9:02

don't make eye contact, others do.

9:05

And we have this horrible thing, this word called

9:07

high, these words high functioning, which

9:09

kind of suggests that there is a bottom

9:12

scale, which is really awful.

9:14

And then, you know, and

9:17

then it really is about being neurotypical passing,

9:19

normal passing. And that's not helpful. Probably

9:21

a lot of the blame for society's

9:24

view that there's high functioning is probably

9:26

from these films like Rain Man, where you've

9:28

got someone who's autistic savant

9:31

and they focus more on the savant that, okay,

9:33

so, you know, people with autism or

9:35

autistic people are geniuses and that

9:38

leads in terms of, you know,

9:41

we then, because of those Hollywood films,

9:43

we neglect the fact that actually, you know,

9:45

some autistic people can have significant

9:48

detriments and a worse in quality of life

9:50

because of some, you know, cognitive

9:53

issues they have and severe social

9:55

awkwardness and communication issues. And we,

9:57

you know, think, okay, they're geniuses, they can deal.

10:00

with life. And it's only 10% of

10:02

people roughly who've autistic

10:04

may have those, you know, expert

10:07

level skills. You've got

10:09

to remember that sometimes those expert levels

10:11

of skills come from the fact that our children

10:13

have intense interests. So if

10:15

someone has spent 12 hours a day thinking

10:17

about something and a neurotypical

10:20

person hasn't, the chances

10:22

are they will become expert at that thing. When

10:24

did you

10:26

first pick up any signs

10:28

or hints that these three children

10:31

had autism? Was it very early on? And

10:33

what were the things that you noticed

10:35

which led you down that path?

10:37

Gosh. In our

10:39

book, A Very Modern Family, which has just

10:42

recently come out about autism,

10:44

about our family, about neurodivergence,

10:46

about raising children with mental health, sort

10:49

of challenges

10:51

and neurological challenges. We

10:53

start by talking about a journey on a plane,

10:56

about

10:56

getting into an airport and

10:59

being on the interconnecting train between

11:02

disembarking and collecting our luggage

11:04

and our child hearing the intercom,

11:07

our now 17, who was two at the

11:09

time, and screaming at

11:11

the sound. Because what we didn't realize

11:13

is that their presentation of autism

11:15

means that their hearing is like

11:18

super-sized. They have hypersensitivity. Hypersensitivity.

11:21

I mean, if we whisper in another room and

11:24

Arlo can hear us, it's just incredible.

11:26

But we didn't know this at the time, just a

11:29

massive discomfort. We started thinking,

11:31

well, that's unusual. And then there

11:33

was the health visitor. Yeah, I

11:35

took Arlo to the health visitor.

11:37

So Arlo was three, I think, actually. We took

11:40

Arlo and the health visitor, I mean, thank goodness.

11:42

Some of these people, some of the professionals are

11:44

incredible. You just get that magical

11:47

person that takes one look at your child

11:49

and says, I've seen this. That

11:51

level of experience and this health visitor was amazing.

11:54

Took one look at Arlo and said, I

11:56

think your child might be autistic. Do you mind if

11:58

I put your child forward for an assessment?

11:59

So actually it was really

12:02

simple, really simple, really quick. Not

12:05

the same for Thailand, not the same for most

12:07

children. But I think

12:09

the way that Arlo presents, a

12:13

little bit more extreme, it also has ADHD. So

12:16

I think if you're autistic and you've got ADHD,

12:19

that's quite a combination. You know,

12:21

your ADHD brain is writing checks that your

12:23

ASD brain can't cash all day long. It's

12:25

a bit of a conflict. I mean, if you think about

12:27

the stereotypical ADHD traits,

12:30

sometimes very high energy and,

12:32

you know, in many cases, very social.

12:35

That's a contrast with some of the common

12:38

stereotypical autistic traits. Absolutely.

12:41

Yeah. So you get these things that are almost in conflict

12:43

where you've got a child who's perpetually

12:46

active and then perpetually exhausted. It's like total

12:48

cognitive dissonance. Absolutely.

12:50

Complete cognitive dissonance. The other thing with

12:53

Arlo that was brilliant is that

12:55

another hint was Arlo would refer

12:57

to himself in the third person, like

13:00

tug you and go, she's thirsty.

13:04

Referring to herself. I

13:06

think it's, you know, more and more we're

13:08

understanding. It would be ridiculous

13:10

for us to say we know everything about autism or

13:12

neurodivergent tendencies because we don't. I

13:15

mean, that depends on how much we understand

13:17

about the brain and we know very little about

13:19

the brain. But we do know that people

13:22

who are neurodivergent have literally

13:24

a different structure in their brain.

13:27

Anatomy is different. Some of the different parts

13:29

of the brain might have larger or smaller

13:32

volumes and the sort of neuron connections

13:34

might be different. So this naturally

13:36

leads to autistic people, you know,

13:39

perceiving the world in a completely

13:41

different way. And we're not accommodating for that. We're thinking it's

13:43

just a cycle.

13:45

We think of it as less than rather than different.

13:48

You know, what's to say in another 30 years, there

13:51

won't be more and more autistic people or neurodivergent

13:53

people and actually neurotypicals have to get

13:55

assessed for neurotypicalness. You know, how

13:57

about that? You're not

13:58

special enough to be. I

14:01

do think one of the things that there's been a positive

14:04

and is being a positive in

14:07

it's negative in that it affects people,

14:09

but it's positive in the response that

14:12

has been so many young

14:15

people now

14:17

are experiencing mental health challenges.

14:20

The same kind of challenges that autistic

14:22

people

14:23

experience daily because of

14:26

the number of stimuli that you've

14:28

both been discussing. As

14:30

soon as something begins to hit

14:32

the mainstream, affect the mainstream

14:35

to the detriment of the mainstream,

14:38

it suddenly becomes a mainstream

14:40

issue. So what we're finding, and I'm

14:42

sure that what you're finding in your profession

14:45

is that what has been considered

14:47

to be exclusively excluded

14:50

to the margins is now

14:53

becoming

14:53

more central. So we're now

14:55

beginning to look and say, what

14:58

can we do? What adjustments do we need to

15:00

make sure that the one in six kids who

15:02

aren't in school anymore

15:04

can come back to school? Well here in

15:06

the neurodivergent community, we've

15:08

been saying for years, what can you do

15:11

to get our kids back to school? And

15:13

the answer has been nothing or very

15:15

little.

15:16

Now it's suddenly on the agenda. So

15:19

this conversation is now

15:21

beginning to become something

15:24

that people whose families don't

15:26

have autism in them, people whose

15:28

families don't have what can be classified

15:31

or was previously classified as neurodivergence

15:34

in, are now beginning to be

15:37

affected by. The things that

15:39

we're discussing here now

15:41

are beginning to touch everybody. So

15:43

when your autistic children, you know, when they

15:46

were younger

15:46

maybe, or even now, if they had a

15:48

meltdown or some sort of really

15:51

difficult episode they were trying to get through or a tantrum

15:53

when they were younger, what would you

15:55

do to sort of calm them down

15:58

and kind of get them out of that?

15:59

Phase

16:00

so the difference between a meltdown and a tantrum

16:03

is an hour and a half Wow So

16:07

tantrum is what all kids have yeah, but

16:09

I want the lolly You

16:14

just go you're not having the lolly and that's the you know after

16:16

five minutes they realize you're not gonna give in and I say

16:19

but a meltdown and autistic

16:21

meltdown is something else it's the build-up of

16:24

absolute intolerance around

16:27

Everything that's going on around them until and the

16:29

anxiety is so overwhelming That

16:32

they cannot cope with life. Wow, and

16:35

when a child is in that space

16:36

I think the first thing that we learned

16:38

was this is not the time to try

16:40

and teach them a lesson so

16:43

So that's the first thing, you know, you need to

16:45

get up off the ground You know what you need to do you need to include

16:48

yourself more at school and get yourself a friend There's

16:50

no point in saying any they're not gonna

16:52

learn anything because I'm

16:53

having a minute a meltdown. It's not a opportunity

16:57

Secondly, we cannot solve their

16:59

problem as parents The first thing we

17:01

want to do as parents is I want to solve your

17:03

problem. Here's the solution I've got it here right

17:05

here. It's gonna work for you. They don't want to know that they're

17:08

completely dysregulated The

17:10

third thing is that if we get

17:12

dysregulated then you have two people dysregulated

17:15

you have the child and yourself the better thing

17:17

is to Deescalate

17:20

in whatever way you can whether that is would

17:22

you like me to leave the room? Do you want me to

17:24

sit by you? What would you like me to

17:26

do? I and then repeat whatever

17:29

they say So if they say I

17:31

hate school you'd like you hate

17:33

school. I'm hearing what you're telling me. I'd

17:35

no one likes me there It's awful. No one likes

17:38

you there. It's awful. I'm hearing you So

17:40

to really hear what they say repeating

17:42

back what they say until they're

17:44

in a space where they come if they say I want

17:46

you to just f off then you go. Okay,

17:49

I'm gonna leave the room now If you want me

17:51

to come back in I'll come back in I'm just

17:53

gonna be outside So that

17:55

may you may think

17:56

what they just said that to their parent,

17:59

but actually

18:00

That moment, all you're trying to do is de-escalate.

18:03

Then, once that child is calm,

18:06

maybe a couple of hours after, or even the next day,

18:08

you go back and you strike

18:10

while the iron's cold.

18:11

So you go back to

18:13

that situation, you say, okay, where are

18:16

you at today? What's

18:18

happening for you? What happened yesterday? How

18:21

do we improve on how we respond to

18:23

you? What might you need to change? One thing

18:25

that was a bit tricky for me was just swearing at

18:27

me. So there were probably,

18:29

all that generally, I'm really sorry, I'm so sorry,

18:32

I dropped the F-bomb at you, my mum really used to call

18:34

that a 17-year-old. But it could happen with a five-year-old

18:36

just as easily, and actually

18:38

just unpicking a little bit of that. When

18:41

they have

18:42

these behaviours sometimes, which

18:44

could be challenging for a mainstream school,

18:46

for example, and their peers, their friends,

18:50

did they encounter much bullying when

18:52

they were growing up? All of them.

18:54

They all do. Every single neurodivergent person you

18:56

will meet, I guarantee, will have a very

18:58

good experience. How do you deal with that as

19:00

a parent to sort of untangle

19:02

them from that situation and actually minimise

19:06

bullying as they're growing older? How do you deal

19:08

with

19:08

that? Well, I think so much of the emphasis

19:10

and the onus is on the person

19:12

to change when actually it's the world

19:15

that needs to change, it's school that needs to change,

19:17

it's the environment, and the stuff we were talking about

19:19

earlier about mindset. When those things change,

19:21

our children have an easier time at school.

19:27

I feel like in a way we're raising our children to

19:29

prepare them for a world that is going to be tough,

19:32

but on the other hand, we're trying to tell

19:34

the world, please, can you help us with

19:37

our children because

19:38

their experience of life

19:40

right now is not so good. Every

19:42

neurodivergent parent or a

19:44

parent of neurodivergent children has

19:47

to be a bridge.

19:49

We're bridges. You have to be a

19:51

bridge between the world that your

19:53

children occupy and the world that they're

19:55

trying to interface with, and you have

19:58

to also be an interpreter.

19:59

to the world of

20:02

who your children are. It's almost like being

20:04

bilingual. When Carrie was talking

20:06

about listening, one of the skills that

20:09

I've learned, I didn't grow up with,

20:11

that has become vital is I grew

20:13

up in an environment. Jamaican

20:16

families, man, would just like to argue,

20:18

and I don't mean argue row. I mean, you

20:21

could just like, no, no, no. I think this

20:23

is right. You get that kind of intellectual back

20:25

and forth, back and forth. So I

20:27

grew up listening to

20:30

respond

20:32

with the kids that we have. I've

20:34

had to learn to listen to

20:37

understand, because sometimes

20:39

they don't want a response. So

20:41

what you're doing is you're having to interpret

20:44

to a world that listens to respond

20:47

and try and teach them to listen to

20:49

understand. Our kids don't necessarily

20:52

need a response. They don't need an answer. They

20:54

need her to be heard. Interestingly,

20:56

I mean,

20:58

when I was growing up, my parents, my

21:00

mom's a doctor, my dad's a lawyer, and

21:03

very kind of traditional jobs, as it were. Structured.

21:06

And my

21:09

parents were relatively conservative, coming from

21:11

an Indian culture and background.

21:14

It was all about studies, high performance,

21:16

high achievements. If I got 95, they'd be like,

21:20

why didn't you get 98 kind of thing? But

21:22

also a loving home. I got everything

21:24

I wanted, only child, et cetera. But

21:27

I always felt

21:28

that in Asian communities

21:30

and many of these cultures

21:33

where mental health,

21:35

these other maybe neurodivergent

21:37

conditions wouldn't be appreciated

21:40

or acknowledged. But I feel in a

21:42

lot of these cultures, and maybe it's the reason why

21:44

historically a lot of these minority

21:46

groups would not be diagnosed with

21:48

ADHD, with autism, with,

21:51

you know, because of that, maybe

21:53

cultural mindset where it's not acknowledged.

21:56

And it's maybe just, oh no,

21:58

he's like that because...

21:59

whatever. He's just born like that. Not because,

22:02

actually, is he

22:03

autistic or, you know? Do you know, it's so interesting

22:06

you say that we were speaking the other day

22:08

doing a program with an

22:11

African presenter.

22:13

Well, he was a guest, actually, and

22:15

he's a well-known comedian. And he was

22:18

saying that in Nigeria, he

22:21

was originally assessed, and

22:24

the assessment started with...it

22:27

was his head teacher

22:29

who would ask for the assessment and said, we

22:31

want to know whether you are

22:33

neurodivergent or whether you are just stupid.

22:36

And I think that for a lot of cultures,

22:40

neurodivergence is considered

22:42

to be...it's

22:44

another thing. A weakness

22:46

or something. It's another

22:48

thing. Yeah. It's like we're the wrong color

22:51

in this society, so you

22:53

have to fit in. We're from the wrong

22:55

place, so you have to fit

22:58

in. You are considered less than,

23:00

so you have to be better than to

23:02

be perceived as equal

23:04

to. Please don't tell

23:06

me you're neurodivergent as well.

23:09

If you look at... It's another thing. If you look at

23:11

the stats, maybe, okay, more than one in a

23:13

hundred people,

23:14

you know, with autism or on

23:16

the autism spectrum disorder, right? And

23:19

that's increasing now because we've got better

23:21

diagnostic criteria and more awareness, but

23:23

it was probably the same, you know, 20, 30, 40 years ago. Absolutely.

23:27

Growing up and all my, you know,

23:30

extended family in India, surely

23:33

with those kind of stats, some of them

23:35

would have been neurodivergence, but it was never

23:37

acknowledged. I don't know a single person in my family

23:40

who has a diagnosis of

23:42

any mental health condition or any neurodivergent

23:45

traits or any conditions, which is outstanding

23:48

because that cannot be true. It's impossible.

23:50

It's impossible. So that itself is a,

23:53

you know, sort of an illustration of how

23:55

it's either disregarded

23:58

or covered up. It's also...

23:59

Also the need to fit in. I

24:02

think there is a deep need to fit in

24:04

in any immigrant culture, whether those Jewish,

24:07

Jamaican, Asian, there is the thing you

24:09

have to fit and 95 is not good enough, you need to get 98.

24:12

That's in all immigrant culture. We have to do

24:14

better than what normal

24:16

is. It's the normal thing again. To be accepted, you need

24:18

to be above and beyond. To be above and beyond. So

24:20

any setbacks are going

24:22

to be felt hard. That's

24:25

the thing. And that's what we need to change. I

24:27

really hate the fact that there are communities

24:29

that are considered by certainly health

24:32

and social care as being

24:34

hard to reach. I hate this. I hate

24:36

that phrase, hard to reach. Why they hard to reach?

24:38

Not hard to reach. We're not doing the right thing. They're

24:41

sitting there.

24:42

Well, even if you look at the medical

24:44

professions as a whole, in

24:47

terms of how we deal with

24:49

neurodivergency and autism, the

24:52

DSM criteria, which is based on the American

24:55

Psychiatric Association, they

24:57

don't acknowledge these stims,

24:59

you know, the self-stimulating behavior. They don't

25:01

acknowledge that as a useful thing. But if you

25:04

talk to autistic people, and I've seen on social media,

25:06

people talk a lot about these stims, hand

25:09

waving or doing certain repetitive behaviors,

25:12

it's a calming coping mechanism. So

25:14

why aren't the medical professionals who

25:16

are in charge of dealing with autism recognizing

25:19

that?

25:20

Yeah, I mean, stimming is a really interesting thing.

25:22

That can be such a calming

25:24

influence. So stimming might be just walking up and down.

25:27

It might be big actions like

25:29

that, big motor skill actions. But it could also

25:32

be I'm sitting there picking my finger. It

25:35

could be like a small thing that you do the whole time

25:37

that is actually keeping you calm or keeping you focused.

25:40

Neurodivergent people generally do those things

25:42

a lot more. So there'll be the lip biters,

25:45

the nail biters, the hand biters, fidgets,

25:48

the fidgety people. The

25:50

drummers as well. The people that drive

25:52

you nuts. Now,

25:56

now at about the age of four that have said that

25:58

kid has ADHD, then they just.

25:59

You said, stop fidgeting. Yeah. So

26:02

I'd stay completely still and my legs would be going.

26:05

I think that part

26:07

of the issue with

26:09

the question you just asked, and part of the answer

26:11

is in much the same way as

26:13

they say, history is written by

26:15

the winners. The diagnostic

26:18

criteria is often written, but almost

26:20

always written by people who don't

26:22

have a diagnosis. Flapping

26:25

my arms does nothing for me, therefore how

26:27

can it be helpful for anybody? Well, you're

26:29

not autistic. If you were,

26:32

you would know it were helpful. Why not? Why

26:34

not just have a conversation with

26:37

a focus group of autistic people and

26:39

discover whether it's helpful. Do you find

26:41

that

26:42

social media and

26:44

the role it plays in raising awareness

26:47

of ADHD, autism and all of these

26:50

various neurodivergent conditions

26:53

is the benefit of that raised awareness

26:56

greater than the risks of misinformation

26:59

and people almost romanticizing

27:03

these conditions as like, hey, I'm ADHD,

27:05

I've got no attention. And kind of almost

27:08

using the stereotype

27:09

as the main form, almost like the rain

27:12

man, kind of glorifying certain aspects of it

27:14

to say, I'm neurodivergent and maybe

27:16

they're not. They're just trying to gain views or

27:18

likes or things like that. So is the

27:20

benefit of those awareness better than all of those risks?

27:23

I think that any awareness raising

27:25

is great. I mean, it's not my job to question someone's

27:27

motivation if they get something out of it

27:29

for being like that's their thing. But if they're saying something

27:32

helpful, and I would say there's

27:34

a hundred times more helpful stuff out

27:36

there than there is negative stuff. It's not

27:38

like people are going to start some theory

27:41

of, you know, it's not dangerous in

27:43

that way. If you're just raising awareness, you're

27:45

simply talking about yourself and your traits. And

27:47

that I think is so helpful.

27:50

There will be people that have listened today

27:52

that will think, oh, my gosh, my child does that. My

27:54

child's doing two or three of the things that they've just mentioned.

27:56

Maybe, maybe I should stop telling

27:59

them off and maybe...

27:59

I should think maybe this is something else

28:02

that's going on for them. Or why am I always that

28:04

parent that gets called up at the end of the day by

28:06

the teacher because my child's done some behavioral

28:09

challenges. Behavior is communication. So

28:11

yeah, absolutely. Anything

28:14

that raises awareness. Thank you so much for having

28:15

us on this. Also, some people

28:18

are very reluctant to sort

28:20

of get a diagnosis or get their child diagnosed

28:22

because they're worried about labels. It's

28:25

only a label

28:26

if you're worried about the label. A label's

28:29

only a problem. Yeah, a label's only a problem. If you've

28:31

got a problem with a label, we don't have a problem with a label.

28:33

For us and for most families

28:35

that I know who had their children diagnosed,

28:38

it's been an explanation.

28:40

Yeah,

28:40

our children are fabulously autistic. They're fabulously

28:42

autistic. They are who they are. And

28:45

I think the problems arise when we have

28:47

a structured rigid understanding

28:49

of what normal and acceptable is rather

28:52

than starting a quest, a

28:54

journey to discover who this

28:57

child is. And then enabling

28:59

them to fully become everything

29:01

they're capable of becoming regardless

29:04

of the description.

29:05

You know, I've already in this

29:07

brief time we've been speaking, you

29:09

know, as a reflection of your colorful personalities.

29:12

I've just, you painted a really colorful

29:14

picture of living life with autistic

29:17

children and sort of navigating that. Sometimes

29:19

very difficult landscape. So thank you both

29:21

for coming on and just being so open about

29:24

everything. Now, before I let you guys

29:26

go, you had some questions. I have

29:28

no idea what they are. So go ahead.

29:30

So I'm really, I have

29:32

spent many years

29:33

talking about owning your own health.

29:36

I've got Crohn's disease and I feel everything

29:38

I learned through my Crohn's I've also been able to

29:40

use with our children or their differences. So

29:43

shared decision making is a really

29:45

important part of the healthcare

29:48

service. How surgeons,

29:50

how doctors, GPs, nurses speak

29:53

to the patient. And

29:55

how do we create better

29:58

equality in our health?

29:59

in our shared decision making. We know

30:02

that, for instance, the literacy

30:04

age out there, just general literacy

30:07

in the UK

30:09

is age nine. So

30:11

when you talk about health literacy

30:14

and us being able to

30:16

own our health and get better at

30:18

doing our health and actually learn how

30:20

to cope with long-term conditions, which many

30:22

of us have these days.

30:23

So there's actually, as it was known, it's a really good

30:25

question. And one of the main

30:27

overarching reasons I do what

30:29

I do on social media is actually to

30:32

improve public health by raising

30:35

the level of health literacy. So

30:37

not using jargon, using layman's terms

30:39

to describe quite complex topics. You

30:42

have that paradigm where if

30:45

you truly know something, you'll be able to explain it to a

30:47

five-year-old. While I'm not explaining something

30:49

to a five-year-old, I wanna have

30:52

in very basic terms that someone

30:54

can understand, decentralized

30:56

health knowledge in a way. And that is a role

30:58

of my social media. And I would say being

31:01

on social media, interacting and

31:04

giving information in layman's

31:06

terms has vastly improved my

31:08

clinical patient communication. And

31:11

we have to not disregard the fact

31:14

that the patient is the expert of

31:16

their own life experience. So when

31:18

they come to the table to have a discussion about

31:20

their gallstones or their flare-up

31:22

of inflammatory bowel disease, we're sitting

31:25

at an equal table where I

31:27

wanna give them all my knowledge in simple

31:29

terms so they can come to the table and we can

31:31

have an equal discussion rather than a

31:34

doctor-centric or a healthcare professional-centric

31:36

relationship where we say, we're gonna do this, this

31:38

is the option, this is what's gonna happen. So

31:41

you have to acknowledge the patient's expertise

31:44

in their own body and their own life and

31:46

almost have that equal discussion where you

31:49

seek to do

31:51

what they wanna do and you've armed

31:53

them with all the knowledge. So I think that

31:55

is the role of my social media, but also yes, as healthcare

31:57

professionals, not be didactic.

31:59

and

32:01

give a monologue of information and expect

32:03

them to be satisfied with that. It's

32:06

the end of the day, it's the patient decision as we all know, it's

32:08

patient autonomy. And now we've got

32:10

these new integrated care systems all over England.

32:13

Are those

32:14

new systems going to, have

32:17

you seen any improvements in shared decision

32:19

making? Is it getting better or are

32:21

we just talking about it but not really when

32:23

it comes down to it? We're all working on a crisis

32:25

mode and the conversations don't

32:27

happen. A lot of things in healthcare take a very

32:29

long time to roll out and to reach everyone.

32:32

So there's a lot of inequality

32:35

in that, but also inequality in,

32:37

we're still using printed

32:39

patient information leaflets and some people might

32:42

be more digitally literate and they might want

32:44

that. They might only speak,

32:46

I don't know, Swahili or

32:49

Bengali and we're not catering for that. Someone

32:52

might be rocket scientist

32:54

level knowledge in Bengali,

32:57

but might be a three year old level of

32:59

English. But we're treating

33:01

them as a three year old because they can't speak English.

33:03

So there's

33:05

a lot of inefficiencies

33:08

and inequalities in healthcare because,

33:11

where so many people pulling in different directions.

33:14

And I don't think it will change very quickly,

33:16

but there is change being made. And I think, I

33:18

personally think, for all its downsides,

33:20

there is a huge upside of social media

33:23

and stuff I do. I've had patients recognize

33:25

me now and they come to my clinic and say, I've

33:28

learned all about hemorrhoids and

33:30

diverticular disease from your videos. And they've

33:33

come on with the knowledge. I'm like, that is actually fantastic.

33:35

You know more than I did as

33:37

a medical student now.

33:38

Curran, I love you. You are my new favorite person.

33:40

Brilliant. I love that you know about hemorrhoids and diverticulators.

33:44

That's great. You've ticked

33:45

every box for me. Thank

33:47

you again so much guys for coming on. Thanks

33:49

for having us. Thank you.

33:51

Thank you.

33:58

Hello

34:00

listeners of The Referral, it's me Dr.

34:02

Curran. Are you tired of scouring the internet

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35:32

Well

35:36

thank you to David and Cary Grant for their very

35:38

interesting insights into parenting three

35:41

kids with autism. Now autism is

35:43

one of those conditions where we're still learning a lot

35:45

about it. So naturally there's going to be lots

35:47

of pseudoscience, lots of myths, and lots

35:49

of plain nonsense. And that is the point of

35:52

this segment. If it ducks like a quack, I'm

35:54

going to debunk some of those ridiculous myths

35:56

you hear. And this episode I'm going to be talking

35:58

about autism myths. Vaccines cause

36:01

autism. That is one of the biggest, most

36:03

pervasive myths that we've seen about

36:06

autism. And it's all thanks to one absolute

36:08

idiot who lost his license as a doctor

36:11

called Andrew Wakefield. In 1998

36:13

he published a paper where he linked

36:16

autism to the MMR vaccine.

36:17

And this was published in a pretty

36:19

high-impact journal, The Lancet. And

36:21

naturally this caused shockwaves in the medical community.

36:24

And since then we've seen lots of controversy

36:27

and lots of hesitance for many parents across

36:29

the world in giving the MMR

36:31

vaccine to their children. Now the reason this

36:33

is a ridiculous myth is the paper that

36:36

Andrew Wakefield published was completely

36:38

fabricated. And later, almost I think 10

36:40

years later, that paper was retracted

36:42

from The Lancet because it was complete nonsense. The

36:45

safety of the MMR vaccine has been studied

36:47

time and time again in very, very

36:50

large studies, in meta-analyses

36:53

where they've grouped together all of these studies and

36:55

looked at the data and there is absolutely no

36:57

link between any of the components of the MMR

36:59

vaccine and autism. And when a child doesn't

37:02

receive the MMR vaccine, they're at higher risk

37:04

of these childhood infections which could

37:07

leave them struggling with development

37:09

in their life. Autism can be cured.

37:12

Now I'd be lying if I told you that we

37:14

knew all the causes of autism. We don't

37:16

and that's something that we are learning bit by bit.

37:19

There is a genetic component and increasingly

37:21

there's an understanding that there's environmental

37:23

factors as well at play. But using the word

37:26

cure is slightly derogatory in

37:28

terms of the language we use because if you speak

37:30

to a lot of autistic people and families,

37:33

they like that part of their life

37:35

and they integrate it into their daily lives

37:37

and it's part of their identity and personality

37:40

as someone with autism. Autism

37:42

is a complex condition which as I said,

37:44

we're learning more about. So it's not about a

37:47

cure but finding how society

37:49

can adapt to autistic people and

37:52

strategies to give autistic

37:54

people so you know they're not so affected

37:56

by the societal restrictions

37:59

that we place on people.

37:59

with neurodivergent conditions.

38:04

Just before we go, we've got a listener question

38:06

in Crowd Science. This week, we've

38:09

got a question from Khadija in Portugal.

38:12

When you have a bout of diarrhea, how

38:14

can you tell if it was caused by something you

38:16

ate? Now, when it comes to the bugs

38:19

which cause diarrhea and vomiting, it depends

38:22

on the type of bug because

38:24

they have different incubation periods,

38:26

which means they can be dormant

38:29

for several hours or sometimes

38:31

even several days, and that can be much

38:33

shorter within a few

38:34

minutes as well. So for example,

38:36

if it's a particularly pathogenic virulent

38:38

strain, you may experience a bout

38:41

of diarrhea within a

38:43

few hours after eating some contaminated

38:46

meat. So you've eaten a takeaway burger

38:48

and it's got E. coli or something like

38:50

that inside it. It's particularly pathogenic

38:52

and virulent and it can immediately

38:55

go, infect your intestinal

38:57

lining, replicate and cause

38:59

inflammation and diarrhea pretty

39:01

rapidly. There may be other bugs

39:04

which lie dormant for maybe 24 hours or 48 hours

39:07

and then start to replicate and then

39:09

cause their symptoms a couple of days later. It's

39:12

difficult to tell whether it was

39:14

specifically the food that you

39:16

ate which caused the diarrhea

39:18

in many cases because there may

39:20

be coincidence. There may be other causes for your

39:22

diarrhea. Maybe you're an antibiotic. So

39:25

it's difficult sometimes to tease apart

39:28

coincidence and it may just be correlation.

39:31

But another common indicator

39:33

that you may have eaten something which caused

39:36

diarrhea is if other people

39:38

who have eaten the same food also experienced

39:40

diarrhea in a similar window,

39:43

in a similar timeframe to you, then

39:45

you can identify that food has probably

39:47

caused the culprit for your diarrhea

39:50

because other people are affected as well. Common

39:52

strategies if you think it is a viral

39:54

illness, in most cases, it is a viral

39:57

illness that causes gastroenteritis. If

39:59

you're sure it is, is that then taking

40:01

medication to stop the diarrhea

40:04

is not always good because you want the virus to

40:06

essentially empty from your gut. Now,

40:09

one of the most important things to do when you have

40:11

diarrhea, you don't always need to go

40:13

to the hospital unless you're unable

40:15

to tolerate food or fluids and you're vomiting

40:18

so much that you're dehydrated, then you

40:20

may need to go to the hospital for rehydration. But

40:22

otherwise, it's just bed rest, being at

40:24

home, staying hydrated, using

40:27

oral rehydration solutions which you can buy over

40:29

the counter. You know, basically

40:31

lots of drinks that have salt

40:33

and sugar content, not just pure water because

40:36

that will continue just to go

40:38

through you and probably worsen your dehydration.

40:40

Khadija, that was a great question. Hopefully my

40:43

answer will help you and other people listening

40:45

as well. And we've got another question, this

40:47

time from Elijah. It's quite a

40:49

strange question. Sometimes, not

40:51

very often, maybe twice a year or so, when

40:54

I ejaculate, my jaw, the bottom

40:56

corners, and tonsils hurt,

40:59

like an aching, overstretching, a cramp.

41:02

Do you know why this happens? I

41:04

told you it was gonna be unusual, but on

41:07

this podcast, anything

41:09

and everything goes. So Elijah,

41:12

and if you and everyone else wants to hear

41:14

the answer to this very strange question,

41:16

you can listen to this and my

41:19

deep dive and explanation to a bunch

41:21

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