Alias SystemInterview #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: https://hiddendisabilitiesstore.com/
Follow us on social media at https://linktr.ee/tasthoughts
Connect with Jade via LinkedIn at: https://www.linkedin.com/in/jadepitchford-waters/
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
people.
>>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?
0:15:09.388,0:15:15.506
>>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
animal.
>>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
community?
>>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
them,
>>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
think
>>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