Hi, my name is Jordan. I am a special education
teacher from the UK. I share my passion for everything
communication, sensory regulation and fun lesson
ideas for my classroom of disabled pupils aged
4 to 11. Each week I am joined by experts in
the field answering your questions and sharing
our knowledge and experience working alongside
our beautiful young people. Let's get started.
Today, I am honored to be joined by Eleanor from
Honestly, I Was Speechless. I wanted to do an
introduction before we start recording together.
I am so excited for this episode. Eleanor is
an AAC user. She describes herself as, or her
communication style, as complex communication.
And she's been very clear with me on how to conduct
this conversation so that she can access it and
it can be accessible to her. We stick to the
questions that I've asked. She's pre -prepared
answers on her AAC device. And you'll notice
that when I go between the sections of questions
that I say once something has finished. and then
explain what we're going to talk about next.
And this is to make it accessible for her. I
hope that you get a lot out of this conversation.
I think it's really important that we're including
the people that we say that we're supporting
in these conversations. It felt very wrong to
me that I didn't have an AAC user on my podcast
where we're talking about AAC so much. So I'm
so excited that she can join today and I hope
you get a lot out of this episode. Hello everybody
and welcome to the Sensory Classroom podcast.
My name is Jordan and today I'm joined by Eleanor
from Honestly I Was Speechless. First of all
we're going to talk about you. So what is your
name and how old are you? 27. Fantastic. And
what is your diagnosis or disability? Autism.
What hobbies do you have? Music. Me too. I love
music. Music, Taylor Swift. Oh, fantastic. Her
new album. I bet you're excited about that. Definitely.
What is your favourite thing to talk about? Lots
of things. Ah, okay. Are you okay that I talk
about your communication today? Yes. Great. What
is difficult for you to do because of your complex
communication? Talk. Understand. Remember. Shall
I show you my introduction I made? Yes, please.
My name is Eleanor and I'm an autistic adult
from the UK. I need significant support with
all aspects of my life. I communicate multimodally
using different types of AAC as well as speech.
I have been exploring gestalt processing with
my speech and language therapist and this has
been nothing short of life -changing. I have
been making posts with support on Instagram for
about six months now and I'm enjoying using this
platform to advocate for higher needs autistic
people as well as to speak about mental health,
regulation, AAC and accessibility. And your Instagram
account is one of my favourites so I'm very grateful
that you've been doing that. I've been learning
a lot. Sorry, thank you. So talking about you
has finished. Now we're going to talk about your
early experiences. I know you prepared something
about what it was like to be a child and your
understanding. Are you okay sharing that with
us? There is so much I can talk about here. I
think I want first to bring up the topic of understanding.
I do believe in presuming every child has the
potential to learn and that especially those
without reliable communication may understand
more than they can express. But when I was little,
I remember really understanding very little language
actually, much less than I could say. speech
was like white noise to me but that doesn't mean
I didn't understand the spirit of what people
said and the vibe in a room I knew who liked
me and who respected me even if I didn't know
what they were saying yeah I see that in my room
too some of my children you can tell if they
feel respected and loved and liked even if they
can't understand yeah absolutely What else as
a child? So expressing things. Are you OK sharing
that with me? The thing that has really stuck
with me is the sheer frustration of not being
understood. I was really challenging as a small
child to the point where one of my earliest memories
is of education as being restrained by four adults.
But I was never naughty. I was in physical or
emotional pain or sensory distress or some other
thing that I needed help with. It is frustrating
not to get what you want and need. And deeper
than that, there is a human need to be truly
seen and heard, which some adults got right for
me and others didn't. This has been a theme for
my whole life, from preschool to now. Yeah, and
that's why we're here today. Yeah, absolutely.
What did teachers get wrong? I guess it was different
back in the 2000s. The biggest negative thing
was just not getting me and seemingly not making
the effort. It's about curiosity. I don't want
to be preachy. I can only speak for myself and
speak on what I've seen happen to my peers and
friends. But I do think being curious is the
best starting point. I think more of my needs
could have been met quite easily if anyone in
the room had really thought about my experience
and what might be going on for me. I had mixed
experiences in primary school. I did have some
stuff who prioritised the relationship and leaned
into it, and tried for me, which was helpful,
even when they didn't always get it right. I
spent time in a mainstream secondary school.
That was genuinely traumatic, to be honest, and
what stuff got wrong there was leaving it too
long. By the time anything was done, I had stopped
eating and stopped communicating altogether.
It could have been caught sooner. There were
also missed opportunities to safeguard me from
harm. Again, a lack of curiosity. The other thing
I would go back and change if I could is how
teachers and support staff understand dysregulation,
dissociation and shutdown. I think shutdown is
too often overlooked because externally it can
look like being okay and some staff would benefit
from learning more about how to support young
people to upregulate and activate when they need
to or get curious about the reason. Let's carry
on. Yes, definitely. I see this too, that stillness
can mean that somebody is in fright mode. Yeah,
100%. What was life like and your communication
like before high -tech AAT? Yep, 100 % so. I
actually have had pretty poor access to AAC throughout
my life. I only got my own personal AAC device
a couple of years ago, in my mid -twenties. Before
that, I relied on my speech, vocalisation, and
things like aided language boards and communication
cards when they were available. Of course, they
weren't always available. This did unfortunately
mean that, without access to communication, my
unmet needs came out in distress for a long time.
Sometimes, this was very externalised, but I
also had a long period of being extremely shut
down, where my behaviour was less loud, but I
was really suffering. I think, for me, the issue
isn't the lack of high -tech device necessarily,
it's that I needed my own personal system. This
could have been a communication book, for example.
Otherwise, it's a case of relying on every environment
you enter to have the right aids. Maybe this
works within a specialist setting. but not out
in the world. Also, obviously not every aid works
for everyone, and not everyone needs the same
support. Having a place where my communication
passport is stored, along with a keyboard and
just about everything I would want to say, is
what has made a difference. I could have been
spared a lot of heartache if that had been in
place earlier, and it would have set me up for
success with transitioning out of school and
things like that. Yeah, keeping it personal and
keeping it available is absolutely essential.
Yeah, absolutely. What does robust AAC allow?
Let's start with high -tech specifically, and
then I would like to talk a little bit about
RobustAC in general, if that is okay. Some benefits
of high -tech are the flexibility, the voice
output function, the ability to have thousands
of words on a 10 -inch device, and the access
to all the symbols I might need. I rely on symbols
a lot, and with AppGrid, which is the app I use,
it was a matter of hoping someone would help
me go on the computer and print off the symbols
I needed. Obviously, that's a massive pain for
everyone, difficult for me to ask for, and it
also limits access in the moment. In terms of
what robust AAC allows, well, again, it has been
transformative. Prior to this device and meeting
my current SLT, my communication plan and what
resources I did have had got lost during a move,
and I had spent years with very little meaningful
communication. Yeah, go figure. So for me, having
the right plan in place now and an aid that can
do whatever I want it to is incredible. I am
still working on my independence with it because
I am still early on in my journey, but I have
a chance now. Let's carry on. That's fantastic.
It's so good to hear from your point of view
the difference that having a robust and personal
and accessible AAC has been for you. It makes
so much difference. What are some of the barriers
that you still face, even with your robust AAC?
Well, there are a number of things. Some of them
are to do with my disability themselves, but
some of the barriers are around my support. funding,
and my access to opportunity. There is a constant
battle to not be overestimated, but also not
underestimated. I have really high support needs,
yet I am incredibly intelligent in specific ways.
People struggle with that. I would say another
barrier is attitudes to disabled people. I am
worthy of a good life, as are my peers, and I
wish commissioners, funders, and politicians
believed that and acted on it. I also face barriers
to access to healthcare. For me, this is the
biggest issue. I am statistically much more likely
than a non -disabled person to die a preventable
early death, not to be morbid, but my experience
trying to access healthcare means this doesn't
surprise me at all. Healthcare professionals
need to know how to support people with learning
disability and autism. We also need better access
to advocacy and more funding for specialist teams.
At the moment, I literally cannot access my GP.
but I am moving next month and in the new year
I will be referred to the learning disability
healthcare team straight away. Amazing, but what
about the people who will stay living where I
am now? You see, it's about access. Yeah, it
can be a postcode lottery, can't it? Exactly,
yeah, 100%. There are lots of people listening
to this that are teachers or parents or people
that support people with complex communication.
What would you like people listening to take
away from this episode? I have a few things.
Firstly, the obvious things which are prioritising
safety, dignity, respect and care and love. Actually,
I think it's OK to call it love. Secondly, presuming
competence and potential, but knowing it is okay
if someone doesn't understand or isn't able to
do something. Thirdly, access to a bus taxi and
a foolproof communication passport or plan. A
support worker said to me years ago, there's
no point working with symbols. Well, she called
it PECS, but she meant symbols when kids are
in school because they leave and nobody bothers
when they're adults. I think something I am really
keen to do more work around is transitions for
disabled young adults. My move from school was
messed up badly, not least because what that
lady told me was sort of true. So it's setting
kids up with their own robust systems and their
own resources and a robust plan as well. And
finally, I want people to consider the needs
and interests of people like me as they navigate
the world. If you are a healthcare worker, you
need to know about hospital passports, just things
like that. And please don't listen to people
who want you to believe that we're not worth
the money it takes to keep us alive and educated
and well. Me and my peers deserve good lives
too. Very much, 100%. I know that lots of people
listening will be really inspired by what you've
said today. I really hope so. And I know they'll
want to find out more about you. Where can people
find you online? I am on Instagram, but honestly,
I was speechless. Fantastic. Thank you so much
for joining me today, Eleanor. Is there anything
more that you would like to say that we haven't
covered today? Not right now. Fantastic. Thank
you so much, Eleanor. And I really, really appreciate
you sharing today. Thanks so much for having
me on the podcast.