0:08

Welcome to the Middle-Town Podcast . I'm

0:10

Kat Hughes , I'm a research officer at Middle-Town and I'm also

0:13

autistic . In this episode , we're talking

0:15

about sleep . It's something that we all need

0:17

, but some of us , myself included , find it very

0:19

hard to get a good night's sleep . I'm

0:21

a two-sleep expert , Debbie Spain , a

0:23

cognitive behavioural therapist and consultant nurse

0:25

who works with autistic people and people with ADHD

0:28

, and , as a scalonopolis , a

0:30

consultant psychiatrist at National Adult

0:32

ADHD and ASD Services for

0:34

St London and Modely NHS Foundation

0:36

. They both have lots of experience

0:38

in supporting autistic people to find sleep routines

0:40

that work for them , so I was very keen

0:42

to pick their brains . Thank

0:45

you both , tassels and Debbie

0:47

, for joining me on the podcast

0:49

. I'd love to start by finding

0:51

out a little bit more about the relationship between

0:53

autism and sleep .

0:57

We tend to refer

1:00

to sleep and the

1:03

autistic spectrum as well

1:05

. Let's start with the autistic spectrum . We

1:07

say , we mention

1:10

quite often . It's a condition which

1:12

is not good or bad or

1:15

anything like that . It

1:18

is a different way of perceiving

1:21

the world around us , a

1:23

different way of processing information

1:26

sensory information as well

1:28

and responding to

1:31

all of these

1:33

stimuli

1:36

in the environment , internal and external

1:38

. And it's just

1:41

like sleep . It starts from day

1:43

one and it's an integral part

1:46

of who we are . And

1:48

I guess one common

1:51

thread between the autistic spectrum

1:53

and sleep is exactly

1:55

that . Sleep is something we

1:58

all experience . We

2:00

tend not to think about it until

2:03

we have a problem with it , otherwise

2:05

we just take it for granted . But

2:09

I often say

2:12

to , let's say , junior psychiatrists

2:14

, who are not very familiar with the

2:17

autistic spectrum if

2:19

you ask an individual on the spectrum

2:21

how they feel about

2:23

the spectrum or how they perceive

2:25

it , they will probably respond

2:27

to you in a very similar way as someone

2:30

else will respond about sleep , and they will

2:32

tell you well , that's

2:34

how I've always been . It's

2:37

always been there . So I don't

2:39

really understand what you want me to tell you

2:41

about it , and

2:45

I think that's quite fundamental

2:48

to keep in mind None

2:50

of that . Neither the autistic

2:53

spectrum nor sleep are

2:55

problematic or

2:58

problematic as per say . They can

3:00

create difficulties in

3:02

our lives depending on , let's

3:05

say , our circumstances , the demands

3:07

from the environment or from ourselves

3:09

, and I guess that's

3:12

probably a more holistic

3:15

and a better approach

3:18

comparing to the very clinical

3:21

, old-fashioned

3:24

approach , which we don't like

3:27

that very much

3:29

and I think

3:31

we moved quite a lot from

3:34

that point . But they're

3:39

definitely from clinical

3:41

experience , but also from research

3:43

and studies that have

3:45

been conducted so far . There

3:48

are quite

3:50

a lot of , let's say , indicators

3:53

that somehow individuals

3:57

on the autistic spectrum , their

4:00

sleep-awake patterns and the

4:02

overall quality

4:04

and quantity of sleep

4:07

is significantly

4:09

different compared

4:11

to the non-autistic individuals

4:14

, and I guess we will

4:16

talk a little bit more about that later

4:18

.

4:19

Yeah , it makes sense because I

4:22

almost naturally think of sleep as

4:24

a yes-no , binary

4:27

approach , but it's so personal

4:29

and so individual , and how

4:31

it might change or impact you is

4:33

so personal and I'd never really thought

4:36

of it in that way before . So that's really interesting . What

4:39

are some common sleep challenges or difficulties

4:41

that autistic people might experience ?

4:45

So I mainly meet adults in my kind

4:47

of clinical work , but I'd say

4:49

some of the really common things

4:51

that people describe are difficulties

4:54

getting off to sleep . So going to

4:56

bed and then finding that as

4:58

the room is quiet and hopefully outside

5:00

is quiet , their mind is quite

5:02

busy , either thinking

5:04

about things that might have happened in the day that

5:06

perhaps were a bit more stressful or a bit more anxiety-provoking

5:09

, or maybe worries about things

5:11

that might happen the next day or that are

5:13

coming up and there's almost

5:16

a loop of thinking of it

5:18

kind of starts , kind of you know , the what-if

5:20

questions or the worst case scenario

5:22

scenarios that come to mind , and

5:25

I think that can make it really difficult for people to

5:27

get off to sleep because their mind is

5:29

so busy and it's almost hard

5:31

to be distracted from that

5:33

. I meet quite a lot

5:35

of women , actually

5:39

I mean , I'd say men as well actually but

5:41

people who have kind of difficulty sleeping

5:43

. So you know they might fall asleep but might

5:45

wake up quite early , three or four in the

5:47

morning , and their mind

5:49

is quite busy at that point . So maybe they've

5:52

noticed that they're worrying , kind of when they wake up

5:54

and then find themselves in a dilemma

5:56

kind of what do I do now ? Do I stay awake ? Do I

5:58

go back to sleep ? And some people

6:00

, we all do it sometimes

6:02

, but we end up kind of scrolling on phones or tablets

6:05

and then that's really engaging

6:07

. And so people end up having this long

6:10

period in the middle of the night where they're not sleeping

6:12

and not feeling refreshed in the morning

6:14

. And then I guess

6:16

a last thing that seems quite common is when

6:18

I meet people who feel quite

6:20

down in their mood , so depressed or

6:23

low in mood . People

6:25

have difficulties kind of getting up

6:27

in the morning , so they might be awake but

6:29

not feeling massively kind of alert

6:31

and refreshed , but might spend

6:33

quite some time in bed , like a couple of hours

6:35

, even longer maybe , where they're almost

6:38

kind of thinking about the things that need to be

6:40

done in the day . But when our mood is

6:42

low , everything feels quite effortful , doesn't it ? So

6:45

people ? I think sometimes people describe

6:47

feeling a bit stuck , that they know that staying in

6:49

bed is not massively helping them , it's not

6:52

making them feel better , but that

6:54

hurdle of like throwing the duvet

6:56

off and climbing out of bed and starting the day

6:58

feels really like too much

7:00

mood-wise and maybe anxiety-wise . So

7:02

again , that can sometimes put people

7:04

off , like going to bed . They feel like

7:07

if they go to bed later they might wake up later

7:09

and they lose less of the day . So I think

7:11

to summarise that I think people

7:13

have difficulties getting off to sleep , staying

7:15

asleep and knowing what to do when inevitably people wake

7:17

up because we all do sometimes . But then that

7:20

morning , like starting the day

7:22

, can be quite tough .

7:24

And would you find that they're specific

7:27

to autistic people or maybe

7:29

more common in autistic people or just across

7:32

the board ? They're the issues that you see people

7:34

struggling with .

7:36

I mean , I don't know what Tassel thinks I

7:38

would say on

7:41

average so not every autistic person who

7:43

I've met but I think people are less

7:45

likely to mention sleep difficulties

7:47

to someone else . So whereas if

7:50

I haven't like a lot of us probably haven't slept very

7:52

well this week because it's been so hot I might text

7:54

someone and moan about it

7:56

I think maybe an autistic person might

7:58

be less inclined to share something

8:00

about their sleep with someone else , because this , as

8:03

Tassel said earlier , it's the thing that we

8:05

just do every day . Hopefully it

8:08

feels so kind of innate that we don't think

8:10

to mention it . So I think people are kind

8:13

of stuck with that and that gives

8:15

less of a way out . So if

8:17

someone's kind of ruminating or reflecting

8:19

when they go to sleep , they might have fewer

8:21

strategies to draw from . That

8:24

might be useful and they might mention

8:26

it less to other people . So have fewer

8:29

strategies suggested to them . They're

8:33

my initial thoughts , tassel . I don't know if you want to kind of

8:35

add something there , not to put you on the spot .

8:38

Just to expand a little

8:40

bit on the world Derby . Third , I

8:43

completely agree with

8:45

that . So that kind of

8:48

links very well

8:50

with this idea of how

8:54

do we approach sleep

8:56

and what do we think about

8:58

sleep . Because you see , one

9:00

of the things

9:03

that we sometimes think that

9:05

sleep is a very inactive kind

9:08

of part of

9:11

the 24-hour society

9:13

, but actually it's not , for the brain

9:15

it's so

9:17

active and therefore

9:20

so crucial for our well-being and

9:23

all of that , and sometimes

9:25

so the

9:27

difficulties getting to sleep or

9:30

the frequent awakenings

9:32

or difficulties going back to sleep

9:34

, is probably something people can

9:36

because it's more tangible , so

9:38

they can actually describe it

9:41

as communicated easier

9:45

. The last part , which

9:47

is actually linked to

9:49

the architecture of sleep and

9:52

, as we talk about the artistic spectrum

9:55

being a spectrum , similarly

9:57

sleep is . You

9:59

know , it goes in cycles and

10:02

in different stages and everything , and

10:04

we may very well clip

10:06

up for , let's say , eight hours , but

10:09

if what we call a restorative

10:12

sleep is not enough , then

10:14

we end up waking up the next day

10:16

feeling quite groggy , I

10:18

guess , not very refreshed

10:21

and generally not ready , as Debbie

10:24

said , to start the day , and

10:27

that kind of has

10:29

a knock on effect

10:31

on things

10:33

like how we perform the next day

10:36

, how we communicate with our

10:38

friends and our colleagues and our

10:42

peers at school and everything , and

10:45

how much we can take on and

10:47

how our executive functioning

10:49

, meaning our attention and concentration

10:51

, and all of that . So these are kind

10:54

of knock on effects and they

10:56

actually originate from this lack

10:59

of restorative sleep

11:01

, which is , I

11:03

guess , a little bit more difficult to

11:05

describe , simply because

11:08

it's more abstract

11:10

, less tangible

11:13

. But I wanted

11:15

to add , while

11:17

listening to Debbie , I couldn't

11:20

help but to think , just

11:23

like the autistic spectrum , right

11:25

, one

11:27

of the reasons and that's an assumption

11:30

, but this actually feedback from

11:33

loads of service users , they

11:35

say that one of the reasons they don't raise

11:38

these kind of concerns

11:40

or they don't communicate

11:44

these issues

11:46

to family or

11:49

their friends and partners and everything

11:51

is simply because sleep

11:54

, let's say sleep away patterns

11:56

or sleep difficulties

11:59

linked

12:02

to the autistic spectrum are in most

12:04

cases , lifelong conditions

12:09

. So they and

12:11

when something happens regularly

12:15

and over a long period of time , individuals

12:18

tend to forget

12:21

that . Wait a second , maybe this is not

12:23

how things should be , maybe there is

12:26

another way and

12:28

they take it as a given

12:31

that this is how it is and

12:33

unless someone kind of provides

12:36

them with a tool or encourage them

12:38

to open up and talk about

12:40

it , then it kind of remains

12:42

a little bit , you know , it fades in the background

12:45

a little bit , and

12:47

I guess that's why we keep

12:51

pointing out

12:53

that it's . It goes both sides

12:55

. You can only expect the

12:58

other person to open

13:00

up and tell you about and

13:03

explain to you everything

13:06

you need to somehow be

13:08

aware and create this

13:10

environment and to

13:12

enable people to kind

13:15

of articulate

13:18

any kind

13:20

of difficulties they may have .

13:22

Definitely . And that's

13:24

so interesting because I think being autistic

13:27

is sort of like an endless list

13:30

of sort of going oh , everyone doesn't think like that

13:32

, and constantly learning it . And

13:34

for me it was the same with sleep , like

13:37

the two sleep patterns that you mentioned , that we have sort of

13:39

the 3am scrolling and then also

13:41

the sort of the mind sort of worrying

13:44

over anxiety . Both of those things . I only

13:47

relatively recently realized that everyone

13:49

doesn't do that . So

13:51

, yeah , it makes perfect sense .

13:54

I thought of two other challenges , if that's

13:56

right , going back to your question about perhaps specific

13:59

or more specific for autistic people . The

14:02

first is I was thinking that

14:04

some

14:07

people live somewhere very quiet

14:09

, very rural . There isn't really a lot of

14:11

sound , there's not kind of new sounds

14:13

. You've got the kind of the wind or the rain

14:15

, but you have lorries going past or

14:17

buses or people walking home

14:20

after a pub at half 11 . So

14:23

I think some people do describe like sensory

14:25

or not necessarily

14:27

a heightened sensory state at that time . But

14:30

actually when we go to bed and we're quiet in our

14:32

rooms , we're just much more likely to notice

14:34

the sounds around us . So for people

14:36

who are married and share a bedroom

14:38

or people who live in a house with other people

14:40

, I've met lots of people

14:43

who find that quite difficult because they've decided

14:45

to go to bed to sleep , but

14:48

actually someone's next door listening to music

14:50

and other persons on the phone , the

14:53

bathroom's quite noisy , so

14:55

someone's decided to have a shower . The washing machine's

14:57

going in the background because someone in the house needs

14:59

a shirt for the next day . So all

15:01

of those like the sensory kind

15:04

of yeah , there's just a lot of sensory

15:06

stuff going on and the person

15:08

doesn't have a lot of control over

15:10

those things . It's not like they can make the house

15:12

kind of quieter in that moment

15:14

. And so I think that can be quite challenging

15:17

, because then people again either try

15:19

to distract themselves Most of us will go

15:21

on our phones , won't we ? So we're scrolling on our

15:23

phones , and then that's obviously alert , you

15:25

know , making us feel more alert , even if it's

15:28

not designed to do that . And then

15:30

the last thing I think that could be more

15:33

relevant for autistic people but is

15:36

a bit on a tangent is sometimes

15:38

people go to the doctor . They might have a diagnosis

15:40

of anxiety or depression . They

15:42

might be prescribed an antidepressant

15:44

medicine or maybe an

15:47

anti-anxiety medicine or

15:49

a sleeping tablet . I mean , I'm not definitely not pushing

15:51

any of these things , but

15:54

what you might find is that maybe

15:56

the health professional hasn't fully explained

15:58

like all of the effects of the medicine

16:01

or the possible side effects . Like

16:03

some tablets make people feel quite

16:05

fatigued , like quite exhausted at the beginning

16:07

. Actually , the same would be true of medicines for , like

16:09

, blood pressure or high cholesterol . So

16:11

there is some research

16:14

that says that some autistic people might be more

16:16

sensitive to the effects of medicines

16:18

. Certainly , clinically people

16:20

do describe that sometimes . But

16:22

I think if people , if the health professional

16:25

hasn't fully described what it might be like , then

16:27

people start to take medicines who are really

16:29

really like physically knackered

16:31

for some days and

16:33

that can quite understandably

16:36

be worrying for the person who thought the

16:38

medicine was going to help them feel better . And

16:40

so I think that sensitivity to like starting

16:43

a medicine or dose changes can then contribute

16:45

to either feeling just asleep , really

16:47

knackered all the time and maybe having a sleep in the

16:50

day and that really impacts on sleep at night time , or

16:53

it might be just feeling really incredibly groggy

16:55

in the morning and wanting more , you know , sleeping

16:58

for 10 hours or 12 hours and

17:00

then that again also disrupts that sleep

17:02

like cycle that Tasos mentioned before

17:04

. So I'm supposed

17:06

I'm moving into more strategies , but I think that

17:09

can be problematic and if people don't have all the

17:11

information about medicines

17:13

and how it might be relevant for them , I think

17:15

people don't always make the connection

17:17

between I started a medicine for my blood pressure and

17:20

actually I feel really kind of knackered

17:22

since then , or feel

17:24

really alerted . Some medicines make people feel actually

17:27

almost quite alerted and the doctors hasn't

17:29

said always take it in the morning , for

17:31

example . You know , don't take it in the afternoon because

17:33

it might kind of keep

17:36

you a bit awake . So that might

17:38

be relevant for some people .

17:41

And then Tasos , you sort of already mentioned

17:43

a bit about the sort of the

17:45

impact that inadequate or disruptive

17:47

sleep can have , but I'd love to hear more about

17:49

whether there's like short term or long term impact

17:52

of that from either of you .

17:54

So when we talk

17:56

about you know our daily functioning

17:59

and and that's something

18:01

very dynamic , right , you know it really

18:03

depends on , let's

18:05

say , if someone

18:07

who is in primary school or secondary

18:09

school or when we move on to you

18:13

, know higher education and everything

18:15

, demands a very different life and

18:20

the same applies you know , jobs

18:22

and everything . So I

18:24

guess we always

18:27

need to keep that in mind , that it's not

18:29

a blanket

18:31

approach , right ? Yeah , it doesn't mean that

18:34

the expectations

18:36

I mean be cognitive

18:38

or , if you like , academic expectations

18:41

will be the same throughout

18:44

someone's life . But

18:47

it makes sense

18:49

that when the demands

18:51

are higher , any kind of

18:53

difficulties we may have with

18:55

sleep and especially , as we said , with

18:58

the restorative

19:00

part of sleep which

19:03

then affects how

19:05

we you know

19:07

very , very basic

19:10

functions of our brain

19:12

, let's say our ability to remember

19:14

information

19:17

and recollect

19:19

them very quickly in a conversation

19:21

, our ability to filter

19:24

incoming information or

19:26

internal thoughts , we

19:28

may have our ability to

19:31

kind of filter

19:34

sensory stimuli

19:36

and keep them in the background

19:39

it's

19:42

compromised , not necessarily

19:44

because someone is autistic , but

19:47

simply because the lack of restorative

19:49

sleep we know that , we know that

19:51

from research , it's been

19:53

improved actually does

19:56

affect how efficiently

19:59

, let's say , our brain will kind

20:02

of carry out these tasks

20:05

and

20:07

they do sound very simple , but

20:09

they're so complex because our

20:12

brain constantly engages

20:14

in this kind of process . It's

20:16

not like right now

20:19

I need to filter and

20:21

prioritize where

20:23

I need to focus on and then I don't need to do it later

20:25

. It comes to me . We do all

20:27

the time and that's why we don't actively

20:30

think about it . But

20:32

it is there so you can

20:34

see that the moment something

20:37

starts , let's say , going

20:40

a little bit wrong , the

20:43

impact will be . Very

20:47

often people say is

20:50

it because I'm autistic that

20:52

my sleep is not okay ? And

20:56

actually the answer is no

20:58

, not necessarily . So

21:01

, as Debbie said , the

21:04

three main factors that

21:06

people tend to kind of ignore or maybe

21:09

not take into consideration is any

21:12

side effects from medication , the

21:14

sensory processing

21:16

and also

21:18

the different

21:21

kind of habitual patterns

21:24

which may or may not be

21:26

linked to the autistic spectrum . So some

21:28

people are naturally , let's say

21:30

, morning types , some people are more

21:32

evening types and the problem

21:35

can be so , for example , I

21:37

am not very much of a morning type

21:39

. But if you , this

21:41

society is not very flexible with these things

21:43

and they try to push you to adjust

21:46

in a very specific kind of timeframe

21:48

and everything . The

21:51

pressure to abide to

21:53

this timeframe which is intrinsically

21:57

different from your personal

21:59

, let's say , time clock , body clock and

22:01

timeframe will

22:04

create a long term

22:06

issue , regardless if

22:08

you are on the spectrum or you're not

22:10

. So and I'm saying that because

22:13

I don't want , because

22:17

I've had it so

22:19

often in the past , and I don't want people

22:22

to necessarily think

22:25

of the autistic spectrum , as

22:28

you know , as it goes

22:30

from the sleep problems . There

22:33

are links and there's quite a lot

22:35

of research around that , but by

22:37

no means but

22:39

a kind of translate that if you're autistic , you

22:42

will definitely the sleep problems

22:45

you may or may not have are

22:47

because of the , the diagnosis

22:49

of the autistic spectrum . So I

22:51

think that's quite

22:53

significant to remember when we talk

22:55

about I don't know if

22:57

you wanted to add more about the effects

23:00

of the lack of restorative sleep . You

23:02

know , late in the day and everything

23:05

.

23:06

I mean I could have , you can do that . I was just also thinking

23:08

that sometimes there's an assumption

23:10

that if someone has like a , they're always

23:13

a morning person . They have made an assumption

23:15

other people around them they will always be

23:17

a morning person , or that if

23:19

they have problems getting off to sleep now , it's with

23:21

them for life . And I think the difficulties

23:24

that people experience with their sleep we all do

23:26

from time to time . They can

23:28

change . So depending

23:30

on the person . You know where the person is living and

23:32

what they're doing with their day and how they're kind

23:35

of feeling in themselves . You know they're having

23:37

a good time or they're having a more difficult kind

23:39

of period in life . So

23:42

I think , like

23:45

if we put into Google like sleep problems , like

23:47

lots of things come up in it but in a way it can feel

23:49

quite flat and I think people

23:51

don't always give themselves the like

23:54

credit's the wrong word , I can't think of a

23:56

different word but like the option , like the kindness

23:59

I suppose the self kindness that this might be

24:01

difficult now , it might hopefully all get better

24:03

in time , but actually if another thing happens

24:05

, that that is kind of normal , that's the normal variation of sleep

24:07

and for all of these challenges

24:10

that come with not having enough sleep or

24:12

the right type of sleep or , you know , restorative

24:14

sleep , there will always be , like different

24:16

things that people can try , because I

24:18

think part one of the challenges possibly

24:20

as well going back to Cap's point , and then I'll come back and

24:22

Tassel's point is that it feels

24:24

quite hopeless , doesn't it ? Like everyone I'm

24:27

sure listening to the podcast will have had times in their

24:29

life where they just couldn't sleep for a few nights . And

24:31

you get into this cycle . You think like this is it

24:33

now , like this is going to be it for like the next

24:35

90 years , like I'm

24:38

never , ever going to be able to get to sleep at like and

24:40

have six hours or eight hours before I go to work , and

24:43

that feels , I think , like quite . It

24:46

just feels like quite real and quite vivid

24:48

, and I think that also contributes

24:51

to challenges . And whereas one person

24:53

might let a friend know

24:55

or someone else know , I think sometimes an autistic

24:57

person might feel more shy

24:59

to contact another person to tell them like

25:01

this is really bleak . Now , you know it's

25:03

been like a week . You know , for example , in London at the moment

25:05

it's really been hot . So I think most people

25:08

have had disruptive sleep this week , but I think

25:10

some people may not feel

25:12

confident or comfortable to let

25:14

another person know or to ask

25:16

, like , what are you doing about it ? Or just to

25:18

say this is a bit rubbish and sometimes even

25:21

that on its own is like a really important thing . But

25:25

Tassel was asking about like the . I

25:29

suppose the downsides of not having enough restorative

25:31

sleep I mean

25:33

things that come to

25:35

my mind is

25:38

it is just harder

25:40

to function . I think like in the day , like

25:42

practically like most

25:44

of us have like a short window , especially for not morning people

25:47

. It's not like two hours to get ready , although I did once

25:49

live with someone who allowed herself two hours

25:51

in the morning . I'm more of a like you

25:53

can get out of the door in 20 minutes and you can drink

25:55

coffee and you could probably breakfast and have a shower

25:58

and do all these things . So I think those

26:01

everyday things that we have to do going

26:03

to work , doing the effortful

26:05

things at work , talking to people , answering

26:07

emails , making decisions quite quickly I think all

26:09

of that just becomes like biologically

26:13

it's more difficult to do that

26:15

because the body's just saying I haven't got enough

26:17

, kind of I haven't got enough energy

26:19

here I haven't got enough kind of oomph

26:21

to do these things I

26:23

think it can have

26:27

like a negative impact on mood and anxiety . So

26:30

if somebody already has some anxiety symptoms

26:32

or is not having , doesn't feel great

26:34

in themselves , mood wise , I think

26:36

when we're tired it is much more difficult

26:39

to make To think

26:41

through all the options in a situation , decide

26:43

which is the right option for me . Here I think we're

26:45

much more likely to jump to a conclusion

26:47

or kind of go down the worst

26:49

case scenario in a way like that . Our

26:51

brain is kind of somehow wired to do that . It's

26:54

like using the information I have right now like what seems

26:56

the best option . But we can't

26:58

go through all those options

27:00

sequentially when we're more

27:02

anxious or more down . So

27:04

I think it can reinforce anxiety

27:07

, the sense of anxiety and also low mood

27:09

. I think the

27:12

other thing well , the two other things

27:14

I think , are one I think

27:16

it reduces people's like interest

27:19

in doing things that they might ordinarily

27:22

enjoy , because suddenly needing

27:24

to get sleep , needing to get the right sleep , needing

27:26

to get the right amount of sleep , does just

27:29

naturally become more of a priority . And so

27:31

if someone says , oh , would you like to come for

27:33

a drink or go for dinner or can I come around and

27:35

watch a video . Actually , even

27:37

if that would be ordinarily like a really nice thing to do

27:39

, it's a bit like well , if they come at seven

27:42

, then they might not leave till 10 . And I will

27:44

have a few things to before I go to bed and then I won't be in bed

27:46

till 11 . And so I think it

27:48

can almost indirectly like

27:50

reduce down the options

27:52

that people have to do things that they like doing

27:55

and actually Tasks , and I would

27:57

always say , want people to do more of the things that they enjoy

27:59

doing more of the time . And

28:02

the last thing that I was going to say is just

28:04

that I think it can contribute like

28:07

a sense of hopelessness and like feeling

28:09

slightly defeated , that actually

28:11

, when we're really tired , if the day feels more effortful

28:13

, we're feeling a bit more anxious . We're

28:16

not feeling kind of that inclined to

28:18

meet people and do like social things

28:20

, whether that's , you know , kind of online or

28:22

with people in person . I think that becomes

28:25

a bit of a like reinforcing negative

28:27

cycle of it's never going to get

28:29

better . It's always going to be like this , and all

28:31

of us take thoughts like that to bed from time to time

28:34

, but that having those kinds

28:36

of thoughts most nights of the week , I think that

28:38

will have a knock on effect on

28:40

poorer sleep , so less restorative

28:42

sleep , and I think it kind of all

28:44

goes round in a loop where the

28:47

less sleep we have , the more worried about it we are . The more

28:49

effortful and fatigue we feel , the less sleep

28:51

we have . That was a

28:53

long answer to a question that

28:56

was perfect .

28:57

I think that will resonate with an awful

28:59

lot of people , this thing , and I think it's

29:01

really heartening , though , to sort of think

29:05

of how it's not

29:07

sort of that we're predestined to have terrible

29:09

sleep at the same time . I think that's so important

29:12

for people to remember if they're listening and they're

29:14

in that sort of cycle or they're feeling

29:16

quite challenged by their sleep . It's

29:18

not something that we're sort of sentenced to

29:20

at all , and are there some

29:22

sort of strategies that people

29:24

can maybe use to sort of help them

29:27

with their sleep regulation ?

29:34

Debbie is really excellent in kind of

29:36

going through these

29:39

different kind of strategies

29:41

and all of that . But the one thing I

29:45

wanted to kind of

29:47

emphasize , one suggestion

29:49

, is there is an excellent article

29:52

or study I think it's back

29:54

from 2019 . And

29:57

it talks about the speaking

30:00

about sensory processing profile

30:03

and everything . The article

30:05

is about the sensory over

30:08

reactivity and how

30:10

that affects sleep and

30:13

in simple terms , that

30:15

means that some people , or some

30:17

individuals , if you like , who are

30:19

on the spectrum , may

30:21

respond to specific textures

30:24

and sounds and smells

30:28

or temperature of the room in

30:30

a much

30:33

more intense , if you like , amount

30:35

of comparing to others , and

30:38

I guess it's

30:42

the two

30:44

layers of

30:47

, if you like , struggle

30:49

there . The first one is

30:51

when they try to

30:53

explain , even if they try to kind of communicate

30:56

that to others . If

30:58

other people are not familiar

31:00

or they're not kind of aware of

31:02

it , they will probably , they're more likely to

31:05

dismiss it and say well , I think you're

31:07

overreacting , I think you know you can

31:09

, you can , you can cope with

31:11

that . And actually they're

31:13

not overreacting at all . Basically

31:15

it's it's directly linked

31:18

to the

31:20

sensory profile and remembering

31:24

that and I think it's really important because

31:26

then it takes away some of

31:28

this kind of guilt People

31:31

may feel . As Jeff said , it can

31:33

prevent them actually from sharing

31:35

these issues they may

31:37

have with others , how to feel

31:39

that they will be bullied or

31:41

ridiculed or whatever

31:43

. And

31:46

someone can start with very

31:48

simple things If you

31:50

create a map of the

31:52

things that provide comfort

31:55

, I guess , and they

31:57

help you to calm down and kind

32:00

of relax and switch off . And these

32:02

are things that

32:04

vary significantly from one person

32:06

to another . So it's

32:09

a very individualized approach . It's

32:11

a very individualized approach even when

32:13

it comes down to how much is enough

32:15

. Not everyone needs eight hours

32:18

of sleep , not everyone needs six hours

32:20

of sleep . The

32:23

problem is when you

32:26

you were sleeping , let's say , x

32:28

amount of hours and that was

32:30

fine and your

32:33

performance was okay and you didn't feel

32:35

that you didn't have any

32:37

difficulties and everything , and then

32:39

suddenly something happens and

32:41

then things are not okay

32:44

anymore . But that's not necessarily

32:47

how someone

32:49

else may feel . So it's very

32:51

individualized . But things

32:53

like , as I said , you have to create

32:55

a map to try to want

32:58

to say a map . I don't literally mean a map

33:00

, but I mean at least of things that

33:03

are wrong . I

33:05

as a person let's say I as a tassels

33:08

find really

33:10

calming and relaxing . I

33:12

will never forget

33:15

when someone kept telling

33:17

me look , if you hear

33:20

I think it was

33:22

down to the rain

33:24

or something like this it will

33:26

literally help you . It will help

33:28

you immensely to sweet up and go to sleep

33:31

. Well , I can tell you it didn't help

33:33

at all . It was making me

33:35

more actually agitated

33:37

and I kept thinking

33:39

well , if this person said

33:41

it , who knows really well

33:43

, they

33:46

are right , but they were wrong . Right

33:48

, because for me it just didn't work . Something

33:51

else did work . So that's

33:53

what I mean when I say to kind of create

33:55

a list of what works for you

33:58

as a person and then see

34:00

how you can , I guess

34:02

, integrate these

34:04

kind of things to implement

34:07

strategies which will

34:09

then be

34:12

more tailored to our

34:16

profile and

34:18

I guess , if they are more

34:20

relevant to us , they're more

34:22

likely to be effective . But

34:26

this and I'm happy

34:28

to send you the link I got

34:30

this paper about the sensory

34:33

over reactivity and the impact in the

34:35

architecture of sleep . It's

34:37

a great example of how

34:39

individualized

34:43

and how tailored

34:46

needs to be , meaning

34:49

the support and the overall management

34:51

if we want to really kind

34:53

of help

34:55

others . There

34:59

are things we'll

35:01

talk about diet as well

35:03

, things about exercise , to

35:07

avoid intense exercise

35:09

just before going to bed . Debbie

35:13

did mention the

35:15

exposure to blue light

35:17

especially , but

35:20

again and I know Debbie probably will

35:23

kind of tell me off because

35:25

of that it's very easy

35:27

to say to someone stop

35:29

doing this , stop doing that , stop doing that

35:32

, stop doing that . Well , and

35:34

we forget that . Well , people do not

35:36

actually behave

35:39

like this . There's no point coming

35:42

up with a whole list of

35:44

don'ts , because

35:46

then it's less likely that

35:48

the other person will engage with what you say

35:51

, because they will think well , you , you

35:53

almost don't understand where

35:56

I'm coming from , because you're telling me every

35:58

single thing I enjoy doing . Let's

36:01

say , before going to sleep , you tell me

36:03

don't do that , and so

36:05

it's not do

36:07

nothing or do

36:10

all of that . I guess if

36:12

someone , if you

36:14

, if you engage more and

36:16

stick to them in a little bit more detail

36:18

, you will find the kind of

36:21

middle ground where think

36:23

they already do , you may

36:25

be able to modify and adjust so

36:28

they , they have a lens of an impact

36:30

in , let's say , someone's sleep , but they

36:32

you retain this sense

36:34

of reward and pleasure . Plus

36:36

you help them to kind of develop

36:39

the skills to be their own managers

36:41

of their , of their sleep in the

36:43

long run .

36:47

I think also it

36:50

is quite important to understand what people

36:52

mean when they say they have problems with

36:54

their sleep . And I think , even

36:56

like a step back from any

36:59

strategies is when someone describes

37:01

or you notice that someone has sleep problems , just

37:03

to find out what that means so for

37:06

them . Because actually somebody might not

37:08

think that spending two hours to get to sleep

37:10

is an issue for them . They're not bothered by that

37:12

. What they are bothered about is when

37:15

they wake up in the morning for college or for work

37:17

, that they just they don't feel refreshed . Or

37:19

it might be the other way around people don't mind what

37:21

time they wake up in the morning , but that initial

37:23

bit of getting into bed and the mind kind of racing

37:25

, that is just really uncomfortable

37:28

. So I think finding out what

37:30

people mean by problems

37:32

with sleep is like important

37:34

. Because the more we kind of when

37:36

I say we like the person , people around them

37:38

, maybe health professionals , the more we understand

37:40

about it , the broader the

37:42

range of strategies . Because , going back to

37:44

your idea , you know your thought earlier

37:47

about well , am I just going to be you know , is bad

37:49

sleep just going to be destiny ? It is , I think

37:51

, really important for people to know that probably

37:54

everybody in their life term will have periods where

37:56

their sleep is much better and

37:58

periods where their sleep is more vulnerable , because

38:01

our sleep is one of the first things

38:03

to get affected if we're having

38:05

a more difficult time and more busy time

38:07

and more fatiguing time . People

38:10

kind of now might have COVID and then just be taking

38:12

longer to kind of feel more kind of back

38:15

to their usual selves . They might need kind of

38:17

more sleep than has been usual . But

38:19

the more we understand about what the problems are and

38:21

also people's expectations for their

38:23

sleep , the more targeted

38:25

interventions or strategies can be . So I think knowing

38:28

what people mean by sleep problems is the first bit

38:30

and knowing what people would like their sleep

38:32

to be like is important because

38:35

some people sometimes I'm thinking

38:37

of people who might have a period of depression so

38:39

typically they've been able to sleep six

38:41

or seven or eight hours without any

38:43

disruption They've had . They're

38:45

now having a difficult time in there struggling

38:48

to get to sleep but also struggling to get

38:50

up in the morning . It's like where

38:52

would that person like their sleep to

38:54

go ? Is it that they hope that next week

38:56

they will be able to sleep eight hours uninterrupted

38:59

, or is there a kind

39:01

of more graded kind of approach

39:03

to that . But I think

39:05

another thing to think about in terms of

39:07

strategies that was part of the question

39:09

is strategies kind of have

39:11

to be outside of the bedroom

39:14

and bed as well as within

39:17

that space , so they kind of start

39:19

from the beginning of the day really

39:21

. That actually if someone's going to be

39:23

able to get themselves

39:25

into a better routine with their sleep as

39:27

much as they can , it

39:30

does involve trying to get up at the same

39:32

time most days of the week . In fact actually I

39:34

think the hardcore

39:36

sleep researchers would say same time every day

39:38

of the week . It always feels a bit harsh to say

39:40

that to kind of people I work with . Like on a Saturday

39:43

and a Sunday you must get up at quarter past seven because that's

39:45

when you're getting up Monday to Friday . But

39:47

the more that we can show our bodies

39:49

that there is this rhythm to

39:53

our day , the more beneficial that is for our sleep weight cycle . But

39:55

being able to get up

39:58

at approximately the same time , staggering

40:00

meal times through the day , I think sometimes

40:03

people kind of stave off . They don't have breakfast and

40:05

they wait a few hours , but already the body's

40:07

going to struggle a bit more and we're going to have

40:09

lulls and then it's easier to go for an apple

40:11

lie down , kind of towards the end of the day and

40:14

that disrupts the night . So , thinking about what people

40:16

do in the day and when the

40:18

activity is some people really like

40:20

to do stuff in the evening . Some people might find

40:22

that over alerting or just a bit much

40:24

. So actually doing the social things

40:26

earlier on in the day might be helpful

40:29

. I am really not

40:31

a fan of blue light . I am one of those people

40:33

that really I don't say don't because that

40:35

seems harsh , but strongly suggest

40:37

trying what it's like without blue light at

40:39

night . That , as Tassel

40:42

says , if we can't tell people what they

40:44

mustn't do , it's much more useful

40:47

to think with people what works for

40:49

you . So there are dimmest

40:52

I don't know what they're called , like the technical term , but

40:54

there you can turn the vividity

40:56

of the screen off , can't you ? You can turn

40:59

the brightness down on it like a mobile

41:01

phone or a tablet . So all of those

41:03

kinds of things are helpful , as

41:06

well as maybe identifying like what's an activity

41:08

that I could do after the blue

41:10

light is gone off but before

41:12

I go to bed . So something that's engaging

41:15

but not giving my brain the sense

41:17

that I need to be awake , I need to be alert . I

41:20

was thinking that if an autistic person

41:22

is living with other people in a shared

41:24

space and I know , some people will

41:26

be able to have open conversations with their like

41:29

housemates or family , and some people

41:31

that might be difficult . But actually

41:33

, if somebody's really sensitive to noise and it is

41:35

driving them bananas when the washing

41:37

machine goes on at like 11 , 15 at

41:39

night , having a conversation with people

41:41

about why that's like really

41:43

not an optimal time for them might

41:45

be helpful . Sometimes

41:47

it's about swapping bedrooms . A person

41:50

might have the bedroom next to the bathroom , but actually

41:52

every time someone goes for a shower or to the toilet

41:54

it's kind of wakes them up . So

41:57

could they do swapsies with someone else

41:59

, just so that they're in a room that's maybe a

42:01

bit quieter . And

42:05

I guess I'm going to go back

42:07

to this idea of like kindness , like being

42:09

kind to oneself . But I think also there

42:12

is a whole range of strategies like we

42:14

can test and I can send resources rather than

42:16

just like just listing them . But

42:18

I think if one thing doesn't work now

42:20

, that's okay because there will be other things to try

42:23

. But I also think if something doesn't work

42:25

like for me this evening , I shouldn't discount

42:27

that as like that's never going to work for me ever again

42:30

, because it might work for me at a different point

42:32

in my life . So there are lots of things

42:34

that we can do that can

42:36

be small changes . I guess that's

42:38

the last thing that I will say is

42:41

changing lots of things all at the same

42:43

time is really difficult for any of us , but

42:45

it's also too big an ask , I think , for a person

42:48

. So having a list of what

42:50

might be some of the things that I could kind of tweak

42:52

, just to see does it make a difference , and try that out

42:54

for three or four or five nights and

42:56

then move on to something else or add something

42:59

else in . I think it gives people a better chance

43:01

now to have a better sleep

43:03

cycle , but also for the future . Then they've got a much

43:05

better idea about well , there's just no point

43:08

trying X , because that definitely didn't

43:10

work for me , but some of these other things seemed

43:12

to work , so they might be more inclined to try

43:14

those again .

43:16

Well then , I love that idea of sort

43:18

of extending kindness to yourself and , from

43:20

the start of the day , thinking

43:23

about how you can be kind to yourself in a way

43:25

that will impact you later on . It's

43:28

lovely , it's really nice . And

43:31

then you sort of talked about the

43:34

things that people around the

43:36

autistic person can do so in terms of sort

43:38

of understanding their specific

43:40

sensory sensitivities ? I mean , I as

43:42

a child always refer to you as the princess

43:45

on the pee because anything

43:47

would upset my sleep Any sort of

43:49

sensory difference ? Are there other things

43:51

that potentially family members could

43:53

do to support sleep

43:55

?

43:56

I mean , I don't know if a lot

43:58

of families with autistic people or

44:01

families with people without who are not autistic

44:03

Do a lot of people talk about sleep , maybe

44:07

just starting to talk about it . We

44:10

make assumptions , all of us make assumptions

44:13

about what another person's experiences

44:15

in their life are like , but we

44:19

don't necessarily talk about these things that

44:21

are quite kind of implicit . So I wonder if

44:23

having a conversation just to find out about

44:25

what different people in the family find

44:27

really unhelpful , what they find useful

44:29

, there's something , I think , validating

44:32

about that , but also kind of normalising

44:35

. So a family might be going through

44:37

a difficult time together . Maybe if somebody has

44:39

passed away and everyone in the family is bereaved

44:41

and trying to kind of cope with that and cope

44:43

with everyday life , people

44:46

might learn different things that are useful

44:48

to them . I

44:50

also think I'm going to go back

44:52

to this idea of kindness . But if

44:55

somebody's not sleeping well , they're

44:57

probably not going to be feeling like 100%

45:00

on top form the next day , and

45:02

so I'm not suggesting that a parent

45:04

or a teacher or someone should massively

45:06

change their expectations of a person

45:09

, but I think the expectations of the

45:11

person should be proportionate

45:13

to how that person is feeling . So if someone's

45:15

going through a period where they're not sleeping more than a

45:17

couple of hours a night , they are going to be a

45:20

bit more grumpy , a bit more tired . So

45:22

asking them to do something that's really

45:24

challenging for them , like

45:27

going to a social thing that they like

45:29

, a Christmas that's a good example . Schools

45:32

ended , the like normal routine has like

45:34

changed

45:37

. There's this build up to doing this like whole big Christmas

45:39

thing with lots of people that the person just want to do

45:41

. One has to kind of manage one's expectations about

45:43

what's fair and proportionate if

45:45

that person is running on like half

45:48

a tank of sleep rather than like completely tucked

45:50

up . So I think that's useful . But I

45:52

also think it

45:55

is helpful to work together to think about

45:57

like what's going to be helpful for this person . So

45:59

if they need more

46:02

downtime of an evening , like not carting

46:04

them around like this is a bit of an extreme example

46:07

, but going shopping like eight o'clock in the

46:09

night or something like that or having people around for a late

46:11

evening meal when you know that person needs

46:13

a bit of time to decompress before

46:15

they go to bed . So I think small things

46:17

like that can

46:20

be helpful .

46:21

Just to add , while

46:24

Debbie was talking about expectations

46:27

and everything I wanted

46:30

to say and of course you know

46:32

if someone's , let's say , performance

46:35

or the

46:38

way they respond to either

46:40

in a family setting or

46:43

at school , and everything changes

46:45

at some point because

46:48

we do talk about how the environment

46:51

can actually support the

46:53

individual I think it is

46:55

really really helpful

46:57

to be aware . But sometimes

47:00

these kinds of changes

47:02

, as Debbie said , may be

47:04

because of , you know

47:06

, sleep problems and again

47:09

going back to the misconceptions

47:11

and misunderstandings , to

47:13

have this

47:16

kind of link or association in

47:19

our minds that wait a second . Maybe

47:21

he's or she or they are grumpy

47:24

today , maybe

47:26

it's because they don't sleep very well or

47:28

, and for whatever reason , we

47:31

haven't had the chance to talk about it

47:34

. A supportive environment

47:36

or accommodating environment is

47:41

an environment , but , as Debbie

47:43

said , it's not to provide excuses

47:45

for everything , but it is an

47:48

environment that kind of takes into

47:50

consideration all the different reasons

47:52

why someone may not

47:55

perform or may not behave

47:58

as you would expect , and

48:00

I think it's really important , both

48:02

for parents or teachers

48:04

and everything , to remember

48:07

that it's not the

48:09

one that sleep is

48:11

in a different planet , and then the

48:13

different factor , more than the individual , lives

48:16

in another

48:18

planet ? They don't . It's not

48:20

like that . They're so interconnected

48:23

.

48:25

Thanks so much to Debbie and Tasos for chatting with me

48:27

and sharing their expertise . Remember

48:29

, the podcast is not a substitute for medical advice

48:31

, so if you're having any difficulties or any

48:33

of the issues discussed , please reach out

48:35

directly to a qualified professional . I

48:38

hope we all get a good night's sleep . Mind

48:40

yourself Thanks for the best night

48:43

.