Interview #4 - Jade Pitchford-Waters Autistic Advocate

In the 4th installment of our interview series, we met with Jade Pitchford-Waters to discuss the barriers and success as an autistic adult. Also, we discuss inclusion for assistance animals and accessibility in the UK versus the US.

Have you heard of the sunflower lanyard in the UK to identify people with invisible disabilities? Learn more here:

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Connect with Jade via LinkedIn at:

The transcript starts here.....

>>Tas 0:08

Today we are with Jade. And she has been kind

enough to meet with us and talk about her

advocacy work, what she does as an autistic

adult for her community, and some other fun

things that we will talk about today. So I

guess the first question if for our audience,

you could share, what is it that you do for

a living?

>>Jade 0:33

so I work in local government in Adult Social

Care. So we have an autism hub for autistic

adults about a co occurring learning disability.

So I coordinate that hub and signpost, people

and help with advice and guidance.

Tas 0:47

Wonderful. So with that being your, your career, what is your focus? As far as advocacy? Do

you have a specific type of advocacy that you are really passionate about?

>>Jade 1:02

I think at the moment, because of

having an assistance dog, it's kind of, it's

kind of focused on that, but I've just got

a new diagnosis of Ehlers danlos, I'm kind

of starting to learn about that. And maybe

I kind of like drift into that as well. I

mean, I talk about autism a lot, especially,

because a lot of people don't think having

autistic. Because they think I so mask so well.

so well, and that I kind of like to just challenge

people a little bit. So I do a lot of training for different, like mental health services

and stuff where they always throws them. When they find out. I'm autistic after I've been

talking about autism for like an hour.

>>Tas 1:39

Yeah, that is something we really relate to,

because we have that same reaction from people.

And so we have done that, as well, as specifically

when we've done advocacy, as far as in our

community with transportation. We did a poll

a couple years back, and we just walked up

to random bus drivers and said, What do you

know about autism? And then people would share

their opinions. And then we say, I'm autistic.

Does that surprise you? It does, it really

does. surprise people. So we relate to that

for sure. And so as far as advocacy goes,

What is your personal philosophy on inclusion?

For people that are autistic or neurodiverse?

As far as education, employment health care?

(technical issues with the audio) Oh, sorry. Oh, hold on, let me know, soon.

Please. Audio work today. Okay, there we go. Um, as far as your personal philosophy, for

Oh, can you hear me?

>> Jade I can hear you.

>> Tas As far as what's your personal philosophy as far

as inclusion for people that are neurodiverse, or autistic in regards to just everyday life,

education, employment and health care services that neurotypical people have access to?

>>Jade 3:07

I think I'm very into, like, my laws around disability. And previously, I worked in education,

and there's quite, there's quite a set laws for for education for young people and what

they should have access to. And that that's, I think people have fought for that for quite

a while. And that kind of just feeds into what I think. So it's just about everything being inclusive. And there shouldn't be like excuses, like why you can't, I don't know,

put a ramp in and why you can't make an adjustment for someone like this, you should just do

it. And I get really frustrated when people don't. And I think I know, I know, there's

bits where I should improve on being inclusive. But I like I'm trying to, but I think it's

just about always trying your best. And if you're not sure, asking people is really key.

>>Tas 3:58

That's so true. Have you seen any improvements as far as your experience and your community? Have there been some, I guess, strides of inclusivity that have been tried in different areas?

>>Jade 4:14

No, it's not as good as it could be. I'm hoping

it might change in September because there's

a new law coming out around autism. So I'm

hoping that will push some more change. I

mean, in healthcare, they've brought out a

bit of guidance, which tells professionals

how they what they need to know about autism and how they need to work with autistic people. But because it's so new people aren't fully following it yet, which is frustrating,

but I think it will get it's just I think it's starting to be on people's agendas suddenly

over this past year.

>>Tas 4:48

Definitely. I think one thing we've noticed,

is post pandemic. It's kind of opened a lot

of people's eyes. I saw someone put it really

well. They said the pandemic has helped employers,

and just for health care and employment realize

that they can be inclusive. They just didn't

want to before. And so it really revealed

that there's so much more that can be done.

And for inclusion, so. And with your personal

experiences you've earned various higher education

degrees you have, would you like to share

with the audience, just briefly what degrees

you have and what they're in.

>>Jade 5:44

Um so I have a Bachelor of Arts in fine art. I have

a foundation degree in special educational

needs and disabilities. I have a postgraduate

certificate in special inclusive education.

And I was doing a postgraduate certificate,

which in teaching, but I dropped out of that,

because it's just with the pandemic, it was

just too much.

>>Tas 6:07

Yeah, definitely it. We understand having

to sometimes pause things. And that was a really

stressful time for sure. So that's definitely

understandable. And but you have earned so

many degrees. So one of the things that we

have noticed is, there can be some stigma

around being autistic and actually going into

college and being at university. Were there

any barriers that you faced during your educational

journey? And how did you overcome them?

>>Jade 6:42

I mean, I didn't have my diagnosis. When I

was at university, I knew I knew I was autistic.

But I was just struggling to get a diagnosis

because the system has kind of low. But I

think I really struggled. So my first degree

I ended up, I mean, after the first six months,

for the rest of the three years, I didn't

go in, because it was just too much. And it

was too stressful. But I think they realized

that I don't think they don't if they knew

I was autistic, but they realized there's

something a little bit different. And they

kind of just let me do that, because they

knew I'd do the work. And it wasn't an issue.

And then I think my second degree, everyone

worked in disability, and they just everyone

was just really understanding it was a small

class, it was evenings, it was like older

adults, it was just really nice. Everyone

would help each other. And you could just

joke about things. And it was just a safe

space. I think in that instance, it worked

a lot better because it wasn't this the normal

kind of massive University classes and things

like that. And then the third one was online.

So I just was in my bedroom and I could just do

it in my own time, which, which worked perfectly

for me to be fair,

>>Tas 7:52

do you find that having the option for online

classes versus in campus classes? Do you feel

that doing an online class can be more manageable

for people on the spectrum?

>>Jade 8:08

Yeah, and I think it's especially, sometimes

it's nice to go in. But then there's days

where you feel burnt out. And if you know,

you can catch up online, or you're not going

to miss a class because everything's there,

like it takes that stress away. Because that's

one of the reasons I dropped out of my last

degree is because I was working, and then

I was trying to train my dog and just there

was too many things at once. Like, I just

couldn't do it. And then it was like classes

from 5pm till 9pm. And it's, there's no time even

for dinner like in between when you finish

work, and it was just a lot for an autistic

person or for a neurodiverse person.

>>Tas 8:45

And with education, do you find that with

what you've experienced and the things that

worked for you? Do you have suggestions that

places of education can do to be more inclusive,

for people that are autistic that want to

get their degree.

>>Jade 9:04

It's about being flexible. We have something

called disabled students allowance here, but

it's so you get like a grant of money and

they can maybe buy you like, I don't know,

computers or get you a mentor or like whatever

you need. But they've cut the budget on that.

So people aren't getting what they maybe got

three or four years ago. So the support isn't

there. And it's, I think that jump there's

nothing there's nothing to help people transition

from what they were doing before into university

and then also the transition out and that's

where I always find people I've worked with,

they get stuck or they end up dropping out

because there isn't the support to guide them

and when they are struggling, that people

aren't giving them options of like, you can

take a break for this bit or you can do this

from home. And I think if people actually

were helping and really understanding what

the struggles are and looking at solutions,

rather than just go and maybe have like the

textbook ideas around autism, I think that

would be it really helpful.

>>Tas 10:02

Definitely. And breaking that stigma around

autism. One of the things that we like to

learn from other people that are autistic

as well, is what kind of stigmas Do you feel

are the hardest to break for people in professional

settings, whether that's at work at school?

What kind of stigma Do you think really lingers

over autism that really prevents people from

being able to be successful?

>>Jade 10:34

I think people think autistic people difficult

is something I've come up, especially in healthcare.

It's like, as soon as I know, you're autistic,

they're like, oh, you're a difficult person,

or you're very emotional, or they just they

start like kind of stereotyping your behavior

when you're just reacting normally. And then

they almost treat you like you're an alien.

And actually, if they just responded in a

normal way that you were to someone who's

upset or stressed, it would, everything would

be fine, but they make it maybe like a bigger

deal than it is. And they make it seem like

it's something really weird and scary. When

those people are autistic, they just maybe

don't realize they're working with those autistic


>>Tas 11:15

That's true. I have you ever had I know, we've

had this experience where it when you tell

a healthcare professional, you're autistic,

and they have a very just odd response. I

think one of the ones we've gotten the most

is, but you can talk. And this is from medical

professionals like this is their job to know

these things. Have you ever had those kinds

of circumstances where you just get like really

odd comments from people in professional settings,

they really should know better?

>>Jade 11:47

Yeah, or even when I'm training my dog, people

asked me if I'm trying to, like Guide Dogs

for the Blind. And then I explain and then

they're like, so you're autistic, and it's

like, but you're an adult, and you can talk

and you're not flapping. I think what I think

I should have like a learning disability,

and it's like, but I don't.

>>Tas 12:08

exactly, yeah, I think that is such a good

point. There's so much. I think in the last

few years, there's been more of a realization

of what someone autistic is, but there's still

all of those stereotypes and generalizations

from like the Rain Man days that just stay.

And it really is in it influences the way

that someone on the spectrum can interact

in a professional setting. And so with your

advocacy work, what do you feel is most rewarding

part in as an advocate when you're when you're

doing the work?

>>Jade 12:51

I think it's just meeting different people,

even if it's just like online, but just talking

to people or when someone like messages you

and says all that that's really helpful, I've

made a difference. So they relate. So you

know, that it's, it's helping someone. And,

or even like when you have met people and

and you're seeing how they are growing. And

that's really nice, and that they're actually

becoming more confident in themselves because

some people I've met and that, I guess they're

kind of, there's such a such negativity around,

like being autistic or having a disability.

And then sometimes, when they actually get

to break away from that, it's really nice

to see how they actually flourish and actually

can really be themselves. And that's, that's

really nice to see.

>>Tas 13:34

Is there any specific projects or success (stumbles saying word)

success, success stories that you've experienced

with your advocacy that you'd like to share?

>>Jade 13:46

I'm currently working on a project. If not,

it's still kind of just, it's just kind of

starting, but like, It's me, and like some

other people who are autistic and some other

people have other disabilities and we're trying

to work with a community interest project

to, like, bring awareness to like assistance

dogs and how they help people who maybe are

autistic or neurodiverse. So people understand

that it doesn't you don't have to just be

blind or deaf or, like, if not, there's more

than just Guide Dogs because everyone thinks

there's only guide dogs for some reason over here.

>>Tas 14:19

You know, that's true. It's similar here as

well. And I'm super excited to talk to you

about it, Archibald make sure I say, it right?

>> Jade Um, yeah, I just call him Archie,

>>Tas to talk with you about Archie because that is also something here. There is a lot of lack of understanding around the fact that

you can have an assistant animal and it's

not necessarily because you're blind. Or maybe

you have a seizure disorder, like people kind

of equate those things to having a assistance

animal but they don't really understand like,

there's a lot of things that

>> Jade Oh,

>>Tas oh no, did

it freeze can Hear me now? Oh. Oh, there we go. You're back. Can you hear me?


>>Jade I can hear you , but

your frozen?

>>Tas Yeah, you were frozen too. It took me a minute to realize you froze? Oh, goodness.

Um, what was the last thing you heard?

>>Jade Um, you said that you started saying it was similar

with there with service dogs and then it just cut off.

>>Tas Oh, yes. So here's the same way, a lot of times

people think that to have an assistance animals that you are either blind or maybe you have

a seizure disorder. And they don't understand like, there's various reasons that you could

actually train and have an assistance animal. So with Archie, what has been your experience

with training and and being able to actually

get an assistance animal? What What is your story with with that?

>>Jade 16:04

Um, I had, she was someone that lives in America,

I think I I was following them. And they had,

um, I had this great day. And then I realized

that it was actually because they were

autistic . And I didn't realize like, I knew

they had them for children that are autistic over

here. But as soon as you turn 16, you can't

get one trained through an organization. And then

I was just kept looking and then I mentioned

it to my partner. But then I didn't think

we were gonna get a dog. And then, actually,

someone assaulted me. And I was too scared

to leave the house. And that's when we first

got the dog. Literally, I think that person,

the person who assaulted me about a month

after they were, they've been sectioned, and

then they'd been released, and they were outside

my house. And I was so scared to leave. And

then my partner said, we could get a puppy

and I found this puppy. It turned out that

someone else had wanted him as an assistance

dog. But they changed their mind. So we got

him. But it's been hard to train him. Because

you're doing it. They're like, hes like 11

weeks old and little baby and doesn't know

anything. And you have to teach everything.

But it is slowly getting there. I think they'll be six, six months to a year. He should be

fully trained, hopefully.

>> Tas Oh, how old is he?

>>Jade He's 10 months old.

>>Tas Oh my gosh. so tiny. puppies.

And what kind of dog is he?

>>Jade English cocker spaniel. Um, so it's a it's a gundogs. It's

like he's basically like a small Labrador a lot of the time.

>>Tas 17:35

And is that I know sometimes here, they'll talk about like specific breeds are easier

to train for being an assistance animal. It is his breed in one of those categories.

>>Jade 17:49

So they have like, they have like a group

called The Fab Four. And he's just just under

that category like he's, he's a good breed

to have. But he's not that he doesn't meet

the top dogs that you would say but a lot

of other other charities do use you spaniels

out here here and dogs use spaniels quite

a lot. Pretty much all their dogs are spaniels.

But it just works because we live in an apartment

in London and it's busy and like going on

the tube, it's really hard to take a big dog.

So a small (inaudible) seemed a bit easier.

>>Tas 18:20

So like on a, if you could walk us through

so on a daily basis with his training, is

it 12 hours a day, eight hours a day training?

Or is it more about that?

>>Jade 18:37

I mean its really, I mean, everything is training, and I guess

throughout the day, but probably set like

training hours, I do about 15 hours a week.

Like while we're at work, I work my main job,

I also have two voluntary jobs. So I have

to kind of balance it in between all those

things, but like every walk, or if I'm like

in a meeting like this, like it's training

them to, like learn how to settle this, there's

always something

>>Tas 19:01

is there any places he can't go? As an assistance


>>Jade 19:08

By law, he's allowed to go everywhere because

he's or even though he's in training and

he's already able to mitigate my disability,

so therefore, I can take him anywhere with

me. But a lot of places don't know the law.

So like, for example, our wedding venue, they

said Guide Dogs only and they said we can't

bring him even though that's illegal. So there's

a lot of that there's a lot of access issues.

Um, but there's a lot of access issues even

without him I found especially since COVID.

So we have I don't know if they have them

where you are, but we have sunflower lanyards.

And they're like green and they have sunflowers

on them. And there for people with disabilities,

but since COVID. Everyone who has who doesn't

want to wear a face mask wears one of those

to say they have a disability so they don't

have to wear one but then people with disabilities

get treated really bad. Because people think

they're faking their disability, and it's,

it makes it really hard to go into shops,

which is really sad.

>>Tas 20:07

It really ruins it for the people that

actually need it. Here in Colorado, they are,

we don't have anything like that right now.

But there's a piece of legislation that they're

working on passing that will have on like

your driver's license or on your ID, there

will be a symbol that is on it that is used

to identify that you have an invisible disability.

Because that's something here there's a lot

of struggle with is the people with physical

disabilities, there's more access. And if,

like, for people that are autistic, you might

not know and so there's a lot of pushback

with that. So they're talking about putting

a little symbol on there. And hopefully, I

don't know, if it's gonna pass, it's still

in the house. But hopefully, they'll have

really strict rules of how you can actually

get that symbol so that people can do that,

like they do with the lanyards where they

just wear. And I think that with the

sunflower lanyards, is that something that's

just in your community, or, or is that so

unique. I've never heard of that before. And

I really like that idea.

>>Jade 21:25

It's all over you. I can send you the link

after this. But it's all over the UK. So like,

I know, all the train lines in the UK, they

recognize it now. So if someone's on the train,

or has that they might ask if they need help

or anything and like most supermarkets will

recognize it. And then there's a few other

places. But I think like more and more places

now, especially since all the COVID stuff

like hospitals are starting to recognize it

and Banks. I think airports as well

>>Tas 21:52

Thats amazing. Yeah, I'd love to read about

that. That sounds, that sounds so wonderful.

Because it would be nice to be able to avoid

some so many uncomfortable situations can

be avoided if there's just that knowledge

behind it. And I really liked that. So with

having an assistance animal, is there any

advice that you would have for people that

are considering getting one training one and

just the process? And is there any advice

that you'd have for people looking into that?

>>Jade 22:28

Research Like, I thought I had researched a

lot. But there's so much more I've learned

in the last 10 months since having him I think

research talks as many people as possible.

I know some people aren't always the most

friendly in the community. But there's always

someone that will answer your questions, or

there'll be a trainer, they'll answer your

questions, but I think definitely do research.

And there's a lot of like scams around training,

I've noticed and just don't get too sucked

into like online assistance, dog drama, because

of a lot of it. And I think people make you

feel bad for where your dogs at in the journey

of learning. And sometimes social media is

not real. And people don't show things exactly

how they are. So just you have to do what's

best for you and your dog, and go at the pace

that you guys need to go out rather than what

other people are doing. But yeah, definitely

a lot of research.

>>Tas 23:22

And with the just good luck, I was so excited

to see how you and Archie do that's amazing.

I love that it feels it feels groundbreaking

in a way As for myself just to see someone

that is autistic having one because that's

something that here doesn't happen very often.

And it's just great to see that somewhere

in the world. That happens, because it's important.

And I think that can really help a lot of

people. So one question I also wanted to ask

so when you're talking about the the lanyards

and how it's becoming more recognized in hospitals

and banks and just everywhere, what is your

philosophy on ally ship for the disability


>>Jade 24:14

I think this is tricky, like I know, over

here, especially the area that I work in a

lot of autistic people, even autistic people

that I know who, who advocate a lot, they

get pushed out by, I guess, parents of disabled

people who think they know best, but that

and then they don't, they're not open to other

people. I think it's about making sure

that you're not blocking out the voices of

autistic people, the voices of people with

disabilities when you're being an ally, and

it's making sure that you're still listening

to those voices and using those to inform

what you're talking about. Otherwise, I think

it's just gonna go off on a tangent and not

be in line with what people actually want.

needs and how people are actually feeling.

>>Tas 25:04

Definitely. And is there anything I wanted

to also so i, this is a new new thing to me.

And so I was really excited I was reading

on your LinkedIn profile. And you mentioned

that you're interested in connecting with

people that were conceived through sperm donation.

>>Jade 25:29

Yeah my mom is a lesbian, and she had me through

a sperm donor. And then in 2016, one of my

siblings joined this database, and that I

was already on the database. And then we were

able to swap the contact details and we met,

and we sound the same, we have like, even

the same mannerisms and stuff, and she's a

twin. So then I got to meet a twin brother,

and again, which is really similar. And we're

like three days apart in age. There's more

siblings, but no one else has come forward.

But I just find it really interesting because

I don't come across other people who haven't

who had that sort of similar situation. And

normally, when I tell people, they're like,

what, like, I think I'm making it up, because

it's just so random. Because I think what

most people think it's just something you

see in movies, and it's not.

>>Tas 26:20

And have you found that has been autistic,

affected any way how your siblings or half

siblings respond to you. And when you move


>>Jade 26:35

my brother's actually autistic, and my sister's

got ADHD, and I think she might be autistic

as well. But she hasn't looked into that yet.

So I think that kind of influenced them to

realize that they might be neurodiverse as

well. And that, then we kind of just laugh,

because we're all just so similar in that

sense to even just like little sensory things.

And it's just, I think it's been a way for

us all to kind of explore that side. And also

that other disabilities that we've realized

that we have in common, like on the Elhers Danlos and stuff. So it's just been nice

that there's other people who kind of get,

I'm close to, and I can just talk about openly,

even if it's things that maybe other people

might think, Oh, that's a bit strange. Why

are you talking about that? It's just, it's

just an open free conversation. And then even

we can, like support each other. So like,

for example, my sister has been applying for

like disability benefits, because like, she

really struggles with working. But it means

that we can support each other through those

sort of things, and then talk things through

to work out how it's affected how things affect

us. And that's been a really interesting kind

of journey to have to support her to do that,

and also to talk to professionals on her behalf

and help her to communicate what her needs

are. And that's it. Yeah, it's been it's been

an interesting kind of journey. I


>>Tas 27:56

that and it's really great because to have

that all so much in common right off the bat,

but also then to be able to support each other

and, and just have that mutual support. That

sounds that sounds great. And one of the things

you mentioned about Ehlers danlos and I wanted

to actually share this. So one of the things

for us growing up is with our other physical

disabilities. That was always something that

they said we could have, but it ended up just

being hypermobility and hyper laxity of like

our ligaments and things. But actually our

partner has Ehlers danlos. So that is something

that we have noticed a trend with people we

know is some people that have ADHD and Ehlers

danlos or autism and Ehlers danlos they kind

of seem to go together a lot. And

>>Jade 29:00

I noticed that um, I used to, I used to work

on, when students when students have a

disability they have like a plan that follows

them through their whole education and when

I used to have to read the plans, especially

boys, I found it was always autistic boys

who had a I don't know if that's maybe just

because boys are more likely to have an autism

diagnosis and things like that, but it just

seemed very common especially in white boys

that I came across but then I think that's

because especially here in the black community

like disability that is it's the bit people

don't really like it I guess. It's a bit uncomfortable,

uncomfortable talking topic for some people.

Even like when I when I say have disability,

like I always feel like people are really

if it's from like, if it's someone from a

different community that kind of like whoa,

like, that's a scary that's a really scary

thing. You shouldn't say that you should keep