Report transcript in: Supporting adults with autism education

Please Report the Errrors?

don't know who wants to go first,

but can you introduce yourself and tell me a

little bit about you and what you're passionate about?

I'll go first. So, um,

I'm Keeley. I'm

26 and I'm quite passionate about

ensuring that

everybody has an equal opportunity for education. So at the minute I'm,

uh,

training to be a teacher assistant in a primary school and

in the classroom,

I always tend to

navigate towards those who have more difficulties within the classroom,

especially those who have autistic traits or a DH D traits or dyslexia.

And I just want to make sure that they have a a fair.

I go with the system because sometimes I've experienced that from

schools, colleges and university, where it's not been

as easy to navigate as it has been for others who aren't autistic.

Thank you for that. It's a really nice introduction.

Caitlyn, can I get ask you the same thing?

Uh,

can you introduce yourself and tell me a little

bit about yourself and what you you're passionate about?

Yeah. Um I'm Caitlyn. I am 38.

um, was diagnosed at

the well.

It was during my fourth really difficult hospital admission that, um,

the referral went through for my autism diagnosis, so

I didn't get my diagnosis until I was nearly 31.

Um, and

again,

if I look back on my life

not having that diagnosis and not having

that being picked up by services that should have picked it up,

has massively impacted on

my life direction. Really?

Um, so

I'm all about

again, like Keeley said, making sure that everyone's included

that everyone gets a fair go.

Um, but also streamlining services

so that there is a clear pathway of where things are supposed to go.

Um, because when I got given my diagnosis, it was literally Here's your diagnosis.

There's nothing for nothing gonna happen for you,

you know? Oh, there might be this this support group that's run up by this charity or

or this, but you've got to, you know, drive half an hour, 45 minutes to get to it.

And, you know, it's just

when you're already given something that's quite

overwhelming and hard to take in anyway,

to then think you're gonna have to go to areas where you're unfamiliar with

to access

a tiny bit of support

it's

It's too much for people

I could also add with that is that I was also diagnosed, um, as an adult at 23.

Um,

again, I wasn't given any direction what to do with that after I was diagnosed

and again, it was only through, um,

the eating disorder service that I was put in the diagnosis, Um,

well, put forward for diagnosis. And I think again it should have been

recognised earlier on, especially within schools.

Uh, so I think a lot of schools need more education on spotting the signs and

and helping.

Yeah,

there is, um there's a massive gap in

the support that's available for autistic people in that

there is a hell of a lot of support out there for Children,

but

and there is support out there for adults.

But there is a massive lack of support for

people who've gone that had that massive gap of

not even knowing that they were autistic until quite far into adulthood.

And it's a completely different support that they need

someone who's gone into adulthood with adulthood

with that knowledge that they're autistic.

It's completely different because you've you've

you've grown up and you've you've learned to live a life that isn't you,

and you learn techniques to cope with that which are masking techniques,

which then

it creates a false sense of security because people think

that you can do things that you actually can't do.

And

it's that support that needs to be really tailored.

And I think that's why a WP are doing really,

really well is that they're recognising that they're you know, they've

They were part of another service and they've walked

from that service because that service was getting funding

a considerable amount of funding

to deliver something that they didn't have the capacity to deliver.

Uh, and they knew it,

but they'd wanted the money.

Um,

and I think as well, it's It's just, um

for me, it's It's regularly assessing

services and putting money into services that are actually like a WP.

They are actually including

the autistic perspective voice in the way that

they tailor their service whereas other other places,

it's it's basically

Oh, well, we've only got the staff to do that.

we're gonna run this even though nobody comes to it.

We're not going to ask you what you want to do

because it has to all fit around what we can start.

It's not about finding the staff to support what people want

for them. It's about,

um,

tailoring what people want

with what they've got

and a WP is complete and utter opposite. They are

asking people what they want. Then they're finding the stuff to run it.

And you did touch on this a little bit earlier, so

I'm just gonna bring the question back. So what impact has late diagnosis and

not having that right support had on both of your lives?

Um, I think

when they

I lost a lot of confidence,

uh, as I was getting older,

I didn't really I thought I had a direction

of what I wanted to do. But it turns out that it was just a

very focused attention on something that I thought was

what I'd like to do in life when it it wasn't and

I didn't really have anybody there to steer in the right direction.

New experiences

was just awful, and I suffered in silence because I didn't recognise that.

That's why I needed help. I thought it was just because it was just me

I thought it was just the odd one out. Everybody else is getting on with things.

Um, so it's quite isolating. And for me

having a later diagnosis, I think that's caused part of the

anorexia.

Um,

because I didn't have any other outlet to

some of the autistic traits that needed support.

Um,

and I think as well it's impacted my

family because they didn't understand different characteristics and

and my needs

just thinking that it was just being

not not.

I wasn't a naughty child,

but quite a needy child that needed certain things in a certain way.

But they didn't understand that, so I couldn't cater for that. So

both

education, socially and in the family life, it's impacted.

Thank you for being so open and sharing bits about your life, Um,

in a really frank and honest way. I really appreciate that.

Caitlyn, can I come to you? If you had anything you wanted to contribute,

uh, again, Like

he said, you know, it's had a massive impact on

health,

but also, in a way, for me,

I've never known who I am.

I've never known what I really want,

and you kind of when you get that diagnosis, you mourn

what you could have had all that time.

It's only literally the past couple of years that I've really

gained confidence in,

got out and got into things,

actually started enjoying things because everything used to be again.

I'm bogged down with an eating disorder as well,

and

it really does. It's It's 20 year, 25 years ongoing for me. So it's never

it's never gonna It's my normal now. But

to think that if I'd had the right support in the first place,

if if I'd had the right autism support in the first place, the

you know the eating disorder would probably never

have got us because it's got.

And it wouldn't have impacted on my health and my life the way it has,

which now limits me and what I can and can't do.

Um, but I'm giving back in a lot of other ways,

but it's taken so so long to get to this point,

and it it's impacted, Ma,

there's there's half my family I don't speak to,

because they just don't understand and they don't want to understand.

And all they remember is

they

pre

autistic side of me that

I was having meltdowns all the time. I was kicking off.

I was being demanding and all of this, but that was all because

my needs weren't being met.

Um, which has then led to so many other problems.

But And if the right support had been there in the first place,

I'd have been on a completely different path with my life.

Thank thank you once again for sharing and being so

open to,

you know, sharing a bit of your life with me.

you've started to both touch on this, So I wanted to explore with you If this is OK,

so can you share with me a recent positive experience of support

of health and social care services in Halton?

Why was it positive and how, uh, did it impact on your life?

Um, I'll go first. Um,

it was firstly with Emma, who originally worked for chaps. Now she's running a WP.

Um,

she's a

therapist who

specialised in autism.

Um, because when I was under the, uh, I was still under the eating disorder services,

but with their therapist, it was a

one size fits all approach,

and they hadn't had a understanding of autism.

But with Emma,

she understand how the autism was then impacting the recovery side

and the continuation of the anorexia so she could work through

the recovery on both sides

and trying to work through them to the point where

they're not clashing against each other.

They're working with each other to get to a point.

Uh, for example, with the dietician in the eating disorder,

Um,

they wanted me to make changes overnight to my diet.

Now,

as an autistic person making changes over a long period of time,

never mind a short period of time, it is extremely difficult.

And and quite, um,

uh, what would the word be? Quite?

It was quite scary and horrible to think of.

they thought I was just being tricky. The the anorexia

was playing up. That was, you know, I was trying not to become

better when really it was the autism side. So

working with Emma has been

so much more

rewarding and better for my recovery because

she had that understanding of the autism.

Um, which other services haven't.

I've heard quite a bit about Emma. And, um what great support she offers.

So it's really, you know, from those really negative experiences, really to hear.

Good to hear about their

positive.

Um,

Caitlyn, can I ask you the same question? So,

yeah.

Um, again, Um um, seeing Emma at tracks. Um, and then obviously, she set up a WP.

And we moved over and followed her.

Just everything.

I don't I don't I know we're

We support a WP and that, but I cannot stress enough.

Even in the short few months that they've been going

the impact that

they have had

my life.

Um,

all of them are

fantastic.

They've all got, um, prior knowledge experience,

and we knew a lot of them from chats.

Um,

but we're put first.

We're a We're part of the autism perspective panel,

and we're asked before anything else gets suggested.

We're asked, we're consulted. We don't agree with it. We say,

and that you know, they'll modify it,

But it's the fact that they're asking us what we want,

what we need.

And they're tailoring their support packages to us.

I'm starting my first day of, um,

social support in the community,

um, through a WP today.

And it's again. I've been asked what I want to do, it's gonna be worked around me.

and it's my It's my time to feel loved and that that what

they try and reiterate to me that it's my time to feel loved.

It's my time to feel important.

I've done stuff for other people,

Um, but as well, you know, even in volunteering for other organisations,

even though I am a volunteer,

people are still picking up on the fact that I need support, too,

that it's not my role to still be supporting everybody else, that even

though I can do that in some capacity,

there's still a hell of a load of support that I need

and that they're working on that. You know, if it hadn't been for Emma,

I wouldn't be on a social care pathway.

Um, I wouldn't be getting therapy from her

if if she hadn't mentioned all of this stuff.

Um,

and I, I just think

they're gonna help so many people.

Brilliant.

Um, and I'm so glad that both of you found the right support now.

So this question is

gonna be exploring. So, what has the challenges been

in accessing support from health and social care?

And what impact does those challenges

had on your lives? And that's obviously gonna be prior to kind of

a WP.

But it's really important for us to know,

kind of what are some of the challenges that people like you face in accessing

health, social care support?

Um, I think for me is knowing where the support is and

how to access it. Sometimes

they only give you one method to contacting them,

and that could be just by phone numbers.

And sometimes that's really quite daunting having to ring up somewhere,

not knowing who you're gonna speak to, not knowing what they're gonna ask.

Um,

and sometimes, if it's easy for those to either have

an email or somewhere to write to

so different methods of being able to contact. Um,

but, yeah, the

there was never an

A direct

is the services that you could

contact to help you give give you support. Um,

after

my diagnosis,

there wasn't anything there.

They didn't have anything there. There wasn't.

The doctors didn't know of any support. It was.

Here's your diagnosis. Now. Sort of Get on with it.

Um,

sorry.

If it hadn't

been

if it hadn't been for like the eating disorder service.

I'd have never been put in contact with

a with a, um, an autism charity.

It was only because those two things met

at one point in time.

There. See, there needs to be something that

every year

they're going back out to the same services to the same doctors, to the same

schools, to the same adult services, and they're promoting themselves.

There needs to be some sort of directory somewhere that it

is the go to thing that you look,

you and they're constantly updating it and refreshing

it and putting themselves out there again,

especially for adults as well, because for Children,

the services and

other activities are so much more accessible,

Um,

and there's a lot more of them as well.

But for adults, it's very, very, very limited, and

especially

for Children, they they they've got their parents, carers,

guardians to to help them get there to settle there.

While some of us don't have the means of

easy transport or having the support of family or friends

because they're not there or because they're working, you know,

physical access is a massive barrier for people as well.

Um,

even with what's provided Now it It's still a massive barrier for people.

So say like, maybe more

money into community transport things And,

um,

you know,

picking up where bus services don't run, you know, like in the evenings. Or

just

like or door to door like subsidised door to door services, just

things that make it

more accessible,

even just like a one off support worker to introduce you to that charity.

Yeah.

So you've touched on, like, the magic word for me accessibility. So I've heard

that, um, services and access in health and social care can be really inaccessible.

What would be accessible for people like you?

Um,

probably

location

is OK. Making sure it's

in a

obviously for autistic people.

You don't want it to be an overwhelming busy area, but as well you need it to be

near certain links.

So as close to a major bus stop,

Um,

a train station,

a tram, whatever,

um,

parking as well, making sure there's adequate parking. Because if

you've got somewhere that's in a town centre, that

yeah, it's a great location for everyone on foot, but

it's not great for someone in a wheelchair or

you know

who needs to park?

Because they're really they're really fearful of what or, you know,

and again familiar places.

Places that are

they've got a sense of community to them, Like brookvale is really good for a WP.

But again, we've got, um

we've got some disabled members, and it's not an accessible building for them.

Uh, because the

service is run from the upstairs.

Um,

but then again, if we needed to find somewhere different,

it's gonna triple the cost of the rent

to do that. So we, you know, that ties your hands of of moving?

Um,

think

and again, like online promotion as well, I think,

yeah, having different means of ways of communicating with with the service

just being one way. And that's the only way. But also, I think

having lots of different pictures of

the

the area, how to get there, what the building looks like,

the people that you'd be in contact with

that takes away quite a lot of the sense of of

how daunting it would be to just go somewhere blind.

But having

something there beforehand gives you an idea of what to expect. So

you're not

considering all the things that could go wrong on the journey there, or

I don't know what I'm looking for, who I'm supposed to be talking to,

because you could be emailing or speaking to someone on the phone.

Yet you don't know what they look like when it comes to meeting them. So

having images

is such

such a help, it really does. And it it takes a lot of the stress away.

Yeah, and again it It's one thing getting funding for activities.

But it's another thing,

like there's so many people that want to do so many activities, but

the the crux of it comes down to. But I can't get there.

Um,

oh,

yeah, it's and it's it's sad because you see people wanting to do things, but then you

you get other people then having to go massively out of their way,

like unofficially, to cater for that

for people,

Um,

which then puts pressure on them.

Um,

but

yeah, I just I just think just making sure that

it's well networked

and

that everything feeds in,

so it's like, Ah, I've got an autistic person who's I don't know, come to

come into my adventure group.

Uh, they want to get involved with more things and as well, I think as well.

Accessibility would be

improved by anyone who who's introduced to a new service.

They're literally vetted to make sure they're getting the right support.

So they have, like, an introductory session where

they're made sure that they're getting the right benefits.

They're getting the right social care support.

Do they need to do a home assessment to make sure that there's nothing else

at home that could be getting away with getting in the way of

them, accessing it?

Talk about the environment and accessibility? How do people

in those spaces need to to behave like So what would you expect? Like what makes

like the support from them are different from the support from other people.

Like, What's the behaviours and

the approach? She put

it back.

She puts it back into us.

She's not greedy about it.

She she takes whatever funding she gets,

and she gives it straight back to us in a form that we can use it.

Um, and there are other charities that don't do that. They just want the money,

and

I think as well like

from a funding perspective, funders need to

be a bit more vigilant as to

how the money is being used, who it's going to and where.

Because a lot, a lot of the places, it's the same people that are

using

are only accessing that funding.

Um,

to say there's

there's a certain charity that runs some of the groups,

but they're the same groups and they're not very populated.

But that's where that money is being channelled into

a group that no one's turning up to,

or it's the same people every week.

Whereas you want that money to stretch over as many people as you possibly can.

And I think that's what Emma's doing is. She's

mixing up. She's providing a variety,

Um, and

she's making it accessible to as many people as possible.

Yeah,

can I go back? So that's really positive to hear. Can I go back to, like, what are they

so kind of ways that you would expect people to

behave like in terms of

she talked about? Sometimes it's not accessible

to Are there kind of particular approaches that people need

to have when working alongside and with autistic people.

I think the environment is quite a big one because sometimes

people don't realise how loud a room can get, and that can be

quite hard for an A

person to

then

focus on what they're supposed to be focused on.

But I think also the expectation that

you understand certain

fial,

uh, expressions,

hand gestures. Um,

and I think as well I feel like I've always got to

explain that I can't do small talk that I can't look at you in the

eye while I'm speaking to you because I find I know people find that rude.

But people don't realise that autistic people aren't

able to do that,

but also in some situations just having little indications where you can say

this is too much for me.

I need to go out of the room because sometimes people like myself.

I don't want to make a fuss. So if there's a small indication

that I can put down or a small gesture I can do, I can go out of the room, have calmed down

or just have another calming space as well. That's that's

really

yeah,

it's all very well saying, Oh, well, take yourself out of the situation.

But sometimes there's nowhere to take yourself off to

or even even little tweets. Like adjusting the lighting.

You know, putting putting, um, noise reducing panels down.

Um,

making the be a safe space to go to.

Maybe there's a dark space to go to because you're just too over stimulated by light,

having ear defenders ready for people to use.

Um,

yeah. I think little adjustments like that make a huge

biggest difference.

Yeah, and thank you for sharing those really good examples.

Um,

so the next question that I wanted to explore with both

of you is drawing your drawing on your own experiences.

What does good support of health and social care services look like?

And can you give some examples

and you've started to touch on this already?

Um, so what makes good support?

I think being listened to and not giving

an approach that it's this has worked before.

So it should work with you as well, Really tailoring it to you,

Um,

and and and listening to,

um,

again

with my doctor. She's absolutely brilliant. She understands everything

that I need within the consultation, she tailors it to me.

Um,

so just having that understanding of

autism in general, but also

the autism in the person.

Um,

my doctor, she knows that I can't look her in the eye. She knows that

I find things hard to explain. So she gives me that extra time?

Yeah. If if yeah, if I can just say, um

as well, not feeling judged being around people who you feel like

they're not gonna judge you.

Like I I'm a massive hoarder, and

I have a lot of problems with, like, compulsive buying and and I'm very impulsive.

And

over years, this stuff's mounted and mounted, and it literally a month ago,

I just I just took pictures of it and sent it to my mum was like,

This is how much I'm struggling

and I've never But I won't even show my parents.

It's It's that bad. I won't even show my parents.

But I managed to show Emma and there's been

everybody's been so kind since, and so patient

and nonjudgmental and

yeah, there are challenges every now and then for them and me.

Um, but

it's

feeling

they feel like family.

And I think

he there's there's a general,

genuine sense of care there.

and I think that's what gives people the boost.

Yeah, absolutely. And that whole.

I just get such a sense of, like, people taking their time.

It's about building up relationship.

Um, what's your previous experience been like?

Has it been have people taken that time? Have people been as understanding?

Uh, no,

no.

Even with the other autism

organisation that I volunteer for,

there's

there's a sense of expectation that Oh, well, you're here. You're OK.

We need to focus on the people that

you know,

you get, you get little comments like, Oh, so and so's struggling.

It's like, Well, do you know what? So am I.

Yeah, II.

I just think

that a lot of other places they don't

once you're on their books, that's it. They need to go and focus on someone else.

Um,

and they don't see the ongoing struggles

the a W PC.

And, um, I'm just conscious that your colleague dropped off the call.

I assume her laptop died because she did get up and

pick it up. Um oh, here she is.

Can I ask you like, um

ho, how much support? Like, what support

do you offer each other as people

with, um, living with autism.

An immense amount.

An absolutely immense amount.

Uh, we've got social groups on WhatsApp.

Um, Kelly and I meet once a week in person.

Uh, and we've we've really We only connected in September.

Um,

and we've our friendships just blown, blown up enormously.

Um,

it's

it's being around people that just get it.

And

you don't even need to say I get it because, you know, they get it

and you don't need to explain everything all the time because it is so exhausting

having to explain why you're doing something in a different way

to someone who's who's

not neurodivergent. It's so exhausting,

even like with my mum. Like

my mum does not realise how frustrating it is when she

doesn't listen to me the first time I say something,

and she then asked me to repeat it three times.

I'm just like it's exhausting,

you know, to actually get to say it in the first to communicate it in the first place,

but then have to go and say it three times afterwards.

You know,

just little things like that that you don't need to

explain to other autistic people because they get it.

Keeley,

welcome back. Um

uh, I

assume that your laptop died.

Yeah. Terribly sorry about that.

I had a meeting beforehand, and I started last, but clearly not. No, no excuse.

Uh, no apologies needed. Mine's always dying.

Um, I was talking to Caitlyn, and the question I asked is like,

how much support do you offer each other like, how valuable is the support

that autistic people give to other autistic people?

It's massively important, and it's completely different being in school.

Obviously, I didn't I didn't know then I was autistic. But

I can see now that the friendships I've got

with the autistic people to then

compared to the friendships I had in school or college

with autistic people, you don't have to mask. They understand you

the there's no judgement.

And when you're having a bad time,

they understand they know other ways and means that they can help you that other

non autistic people wouldn't necessarily know.

and they can just make you feel that you belong

if you belong in the world. Because sometimes, like I said, it's very isolating

and knowing that there's other people out there just like you

with just different nuances. And then

it makes you feel part as

group that

nobody else can access. Unless you've got this special little,

um,

card.

Yeah,

it's it's lovely, and it's really, really special and important.

Um,

and I've seen people when I've been, uh, volunteering, who've come in,

never had the experience with other autistic people,

and they've realised that they can

They can breathe, they can be themselves And then they've realised,

You know, that there is a place for me in this world and it doesn't have to be

all about how

I've got to constantly think of getting into a world.

You can just fit in that world, and it's fine.

So, um, I wanted to ask, Like, what messages? Or what would you want?

People that are offering

services in Horton to hear

about the needs of autistic people. Like what? What needs to change?

What do they need to know? What do we need to do to make the world more inclusive?

Uh, the world the world can't really function without us to be fair,

cos you need autistic people.

It's what keeps the world, you know, it's what keeps passions going.

What give It's what gives people drive.

Um,

I'd say to

to to know the different, um

the the general

ways that they can make it accessible.

That would also make it accessible to non

autistic people because not everybody likes a noisy,

scary

loud room. Or some people don't realise that they don't

understand something first time around, and they might need it to be repeating.

So quite a lot of the adjustments that autistic people need

the general public probably do as well, sometimes

so instead of making it feel as though that we've got to have special treatment,

is to have that knowledge of the adjustments and knowing

that they can do it straight off the back.

If somebody said, Look, can you do that

instead of having to say,

Oh, OK, well, we'll need to have training for that.

We need to do that for adjustments.

OK, I've not heard of that one just having the general

list of adjustments that could be easily done and not be made to feel

as though you've got to be made a special different to everyone else.

Yeah, just having more diversity and more

um, variety in life.

Just give everybody more options And then everybody's got more space

and also listening to the person and not make them feel as though they are being

annoying or a burden.

If they do ask for the adjustments Just saying OK, we'll do that.

Or sometimes actually asking them what the adjustments they

need because most quite a lot of people,

including myself,

unless I'm actually asked I won't volunteer up the information that I need help.

Um, so somebody saying Do you need adjustments? Will

just egg me along a little bit to say,

Actually, yes, I do.

And,

um,

I've got probably one more question and I'm gonna

ask you if you've got any questions for me.

So what

should

like? What do you hope to like? So are you Do you know about Coro?

How much

coro are you doing?

Have you Are you doing any co

productions? Have you heard of co

production?

Uh, well, I think we're Coro

producing with Emma,

as in the way that

shes shaping a WP and using the autistic perspective panel

to get our ideas and our input

was that important?

It's massively important it wouldn't be what it is without that,

it makes you feel listened to

and

like, you're putting an input into your

your services are not just being given a list of this is what you can do.

If you don't like it, lump it. We are being listened to tailored to,

And if things don't work out,

we're asked for feedback.

Um,

and then things can be changed next time.

Um,

and it just makes it a lot easier to navigate.

Yeah,

because we're not just service users. We are.

We're not just volunteers, but we're also service users as well.

we're running it as it's going along

and giving that running commentary, feedback

of what we think,

Yes, no, she's taking our ideas on board that have come from us,

and she's implementing them

all that are influencing them.

And do you think that's important? Beyond

do you like So the

Do you think that happens beyond kind of a WP of

mm, Not from my experience. No,

In my experience, there has been, like I said,

when I've been to the doctors and and my doctor.

But that has took a long time to

get the message across that I do need

these little adjustments. I do need things to be in a certain way or so.

It's took a lot of hard work for to get people to understand that

for me to feel comfortable and safe

and to be able to be open with somebody and to access the service they need to,

they need to to adjust. But like I said, it's not always easy.

You do have to sometimes really work out to get your point across,

that you do need that help or those adjustments or something,

especially when you come with labels attributed to you of certain things.

So it should be made easier and not as hard as it is.

Thank you so much for sharing so open and honesty with me.

Have you got any questions for me?

Uh,

I have, um,

four

autistic adults,

especially those later diagnosed.

They,

like myself, have parents who

have grown up with me being as I am,

and then suddenly I change because I'm allowed to be autistic as a diagnosis.

So I was just wondering

if you'd thought about the services that have been offered to autistic Pa.

Uh, parents of autistic Children that are adults, not as just Children.

Yeah, So

we're collecting stories, um, of people with

a learning disc

and autism.

As a result of what I've heard today,

I will be taking it back to the team to say, How are we connecting with? And we have

included family members, carers,

and we're using,

you know, significant people, uh, family members and carers as kind of the

the term. But

I think it's an important point, and I'm gonna take that back. Uh,

we already wanted to hear from people that are supporting their loved ones, um,

or family members

and their experiences. But it's such an important point. Um,

when you're maybe forced to live in a

particular way because people don't understand you and then you have the freedom.

Maybe it's really hard for other people to understand

what it feels like

to,

you know, not have to mask, not have to fit into boxes.

So I think you've asked some really important questions.

I hope I've answered your questions, though

it I'm gonna just say that we are gonna capture some stories that ensure that that,

that we hear from family members

Yeah, I'd say I'd say I'd say,

like, touch on Mark.

said, you know,

I, I think

my biggest

glimmer of hope with joining an autism charity was actually

getting support from my parents

because, yeah, I was accepting it and making changes, but

there was still something blocking them.

Um, and there's not enough support, Like

I said for

parents of late diagnosed adults.

Yeah,

and just to say, if any of your parents wanted to have a conversation with me,

please do connect with us. I would be really up for that as well.

Um, because it's such an important point. Like people often,

you know, particularly women,

um, are

least likely to get the right support at the right time.

Um, they their families might not understand.

And then when they feel liberated because they're accessing the right support,

um, it can be hard for people to understand what it

feels like. Um,

yeah,

um, any final thoughts or questions

for me? Um,

not really.

Just where do you go from here with this?

So what we're gonna do is I'm gonna send you a consent form

after this, um, which I'll get you to complete

we're gonna invite you back to a couple of workshops. So we've got a workshop.

We've got two workshops and we probably have six people in one workshop,

six people in another workshop where we'll look at some stories and look

at what are the key themes and topics coming out of the stories.

And then we're gonna present a film and some findings back to Horton

How to be more inclusive,

how to really understand the needs of people who are learning to speak with autism.

Um, so in the short term, it will be I will write up what we've said,

What's being discussed here.

I will save this video.

I'll send you a consent and then I'll send you some dates of for the workshops.

But we very much see you being part of the journey. And

I have to say, like, I've heard

poor people's story so far,

and it's so nice to hear that you're getting the right support from

a WP, and I forgot what a WP stands for. Please remind me. What is that?

Autism well-being project. The autism Well-being project. And particularly, um,

I've heard so much positiveness about Emma.

Um, so It's been really great. Um, so we'll keep you it It will keep you involved.

I mean, all of them Really Emily as well.

Um,

because they've all you know, they couldn't have done it without each other.

Yeah,

did that. Answer your question, Kaitlyn. Sometimes I thought,

Yeah, OK,

so what next is I'll send you a thank you email this afternoon

with a consent form. Then I'll find out when dates.

Uh,

people are available to meet and have a workshop where we look at a number of stories,

and then we're hoping to have a bigger,

um,

workshop where we call them a conversation

change where we present some of the findings

or some of the thinking and stories to create the change that you've talked about.

And we've heard things about accessibility, about being inclusive,

about different voices, about family members

so much we've heard. Um,

So, yeah, Thank you. Um, if you don't have any more questions, um,

thank you for including us.

Oh, and thank you for for helping sort out dates and times. You've been brilliant.

And I just wanted to say you've shared so much.

If anything does come up, Um I'm around for the rest of the day. Just drop me an email

or give me a call. My number's on my email.

Um, and once again, Thank you. Thank you, Thank you. It's been amazing to hear and

I will be in touch.

All right, You take care.

Bye bye. Bye bye.

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Author

streetreporter

Post date

20/03/2024