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.
Hello everybody and welcome to the Sensory Classroom
podcast. My name is Jordan and today I'm joined
by Laura from Spinning World of Autism, all about
her campaign for Speak Up for Autism. I'm going
to talk about what it is and how you can get
involved in that today. Hi Laura. Thanks so much
for having me on. Again. So you were, I mean,
maybe even... Two years ago, I was speaking to
you in episode six, if you haven't caught that,
in episode six, all about Ethan starting school
and talking about what school might look like.
But we're talking about something very different
today. But if somebody hasn't watched that, are
you all right just telling us a little bit about
yourself and Ethan as well? Yeah, so I'm Laura,
alongside my partner with parents of Ethan, who
I know well. discuss probably frequently during
this episode. So just to introduce myself quickly,
I call myself autism and AAC advocate. And I've
had some really great opportunities. I've spoken
in the Houses of Parliament, sharing our AAC
story to MPs that really are flying the flag
for all things assistive technology. I've also
got an assistive technology scholarship and went
to Florida, of all places, to attend the world
-leading exhibition there. I'm autistic too.
I followed the fairly classic path I guess of
being diagnosed a year or so after Ethan and
just nodding along and being kicked under the
table by answering all of the questions. Ethan,
our son, he's six years old. Firstly, he's wonderful.
He brings a huge amount of joy to our lives and
his interests are now our interests and we go
bird watching and have binoculars and spend all
of our lives in the forest which is good for
him and actually is a really great kind of mental
health thing for us. Ethan is autistic, he's
non -speaking and he's communicated with a high
-tech AAC device for over two years now. He also
attends a specialist school and he's recently
received a diagnosis of, a working diagnosis
of apraxia of speech, which we'll mention later
on probably and share kind of why that's working.
Why it's a working diagnosis, not an official
one. But essentially apraxia is when the jaw
and the brain and the lips and the tongue, everything
we take for granted when it comes to speaking,
when they can't coordinate properly and that
means he's... non -speaking yeah so that that's
us really would i practice because i think apraxia
is really important to discuss actually how could
you explain to my listeners how apraxia affects
ethan's communication style and how that might
support aac use as in what i mean by that is
he clearly knows what he wants to say it might
just be the like physically or the connecting
from getting those thoughts out through speech
maybe isn't as easy for English would you agree
with that yeah so I think we all know and not
enough people know but the myth about non -speaking
somehow meaning children aren't intelligent or
they can't hear and things like that Ethan proves
that this isn't the case sort of all day every
day And he can use his AAC device to get everything
that's in his head out. So Ethan does well with
the AAC device and took to it really quickly.
And I think that's because he had such a strong
desire to communicate. And he had so much that
he wanted to say. We still have the barriers.
Obviously, Ethan is autistic and high needs.
So he's sensory seeking and has a short attention
span and things like that. So, you know, it's
not easy, isn't it? isn't a kind of perfect sort
of thing, but he's got so much to say and he's
able to share it. Most importantly, I love it
when he asks for help via his ASC. I just think
that's so important. And that can be like he's
dropped something, he's dropped his drink in
the car, so he might press help water instead
of launching forward and grabbing us when driving
or whatever. Right, because that's how else would
he communicate. It would be through his body,
right? And that's what we're talking about. Exactly,
yeah. Nathan. does show challenging behaviors
and that is part of Ethan and it is a part of
our daily life even with an AAC device even with
Makaton and even with us you know trying to do
everything right but We can 100 % say for sure
that his AAC has hugely reduced that. And of
course it has. He can tell us things. And for
a six -year -old, wanting a chocolate lollipop
is as important as telling us that his ear hurts.
And he has every right to be able to share that
with the world, right? And for you guys, that
was AAC and Makaton. But you've had to fund that
and train for that and support that privately.
That's what we're going to talk about today.
When did you first have contact with NHS speech
therapy? Let's go back there. Yeah, so I have
to always like really rack my brain. I think
I probably blocked out a lot of this sort of
time. But getting Ethan referred for speech therapy
was actually very easy. And Ethan, up to the
age of three, maybe slightly older than three,
was basically silent. He never babbled. We kind
of joke, but I guess it's not really funny, but
we hear like newborn babies say stuff. You know,
we're in coffee one and a newborn baby will say
something. We've never heard babbles, anything.
So Ethan, apart from blowing raspberries and
apart from crying, which actually in hindsight,
now I know more babies. He actually didn't do
that often. he didn't make a sound so getting
the referral you know we still heard some of
the classic you know boys are lazy he'll catch
up have you spoken to him all of that but getting
referral was easy we had the classic you know
it's a really long waiting list he can only be
seen when he's two but we were able to say well
if it's a long waiting list can we refer him
now so we were seen I think pretty much as Ethan
turned two so so that worked and then what was
the what came from that referral what were you
what support package i suppose were you given
what interventions were you offered yeah how
what did that look like and then and then i suppose
what was the impact or non -impact of of that
yeah um so when we were accepted to speech therapy
probably like lots of parents of autistic children
whether they're non -speaking or whether they're
struggling to communicate in any way that was
a huge light you know like light at the end of
the tunnel we're going to be helped we're going
to have speech therapy they're going to look
into why he's not talking we're going to have
strategies and advice but actually in our experience
and actually for thousands of other families
who I've subsequently spoken to that just isn't
the case so we say that we have never had speech
therapy. So we've been in the room with a speech
therapist, we've had a speech therapist in the
house, but we've never had speech therapy that
actually looks at Ethan as a unique individual
and actually makes recommendations and support
to him and to us as his parents that we can actually
help him with. So we found it was just very generic.
We found that there's definitely fear of autism.
So we brought up autism and were just kind of,
no, he's not autistic, you know, sort of total
kind of shut down and dismissal. The sessions
relied on speech. The child, you know, I joke
about it again, but we're still waiting for Ethan
to say go so we can drop the car down the ramp.
But it's been four years or, you know, we're
still waiting. If Ethan wouldn't say moo when
he showed the cow, there didn't seem to be any
other strategy. We were left with generic advice,
generic targets. But actually what was worse
than that happening was then the misinformation
and further dismissal that happened. So we brought
up high tech AAC because I'd seen a family user
on Instagram. I think they're in America. Ethan
was an absolute, well, he is a whiz with technology
and doing things and they're like, show me how
you did that sort of thing. So to us, it was
obvious it would be a success for him. We would
dismiss saying that it will stop him talking.
It just stopped a huge, huge misconception, isn't
it? There was no evidence of that. No, I know.
And there's evidence on the other way. You know,
there's loads of evidence in scientific studies.
We've got videos now of Ethan pressing ready,
steady, go to make a penguin jump off. And then
he says, go. You know, there's evidence everywhere.
But what a huge thing to say to a parent. So
I have to like take myself back. But when Ethan,
when we had this conversation, we were kind of
deep in the trenches of. Not knowing what autism
is, not knowing what anything is, really trying
to sort of cling on to hear a speech therapist,
a professional tell us. It took great, I guess,
strength of our part to be like, actually, I
know that isn't true. We're going to crack on
and do it ourselves. It's obviously hugely worrying
for families that don't know that. And I wouldn't
blame any family for hearing that from a professional
they've brought into their lives or that has
been brought into their lives. They're the expert
that tells you that. I wouldn't blame the family
for believing it and not questioning it and not
looking for other roots and other evidences.
You know, it's amazing that you didn't do that
because that is credit to you and Ethan. But
I wouldn't blame any parent that doesn't take
that at face value because why wouldn't you?
Yeah. yeah and like there's problems as well
with the aac sort of guidance criteria and it
says things like a child should be able to use
low -tech aac first of like the picture cards
and and ethan can't use them because he's so
sensory seeking so wild we did the laminator
thing and did everything literally turn around
there down the back of radiators yeah yeah gone
You know, so, but we never got to that. We've
got, I think sometimes I get asked as a result
of this, oh, were you denied a NHS funded device
and things like that? I say, we never got to
that stage. We never even passed the initial.
And now I have time, have had time to think about
it a bit and kind of mull on it. I think it probably
came from a place of fear almost that the speech
therapist. probably didn't know very much about
high -tech ac so instead of just saying actually
um i'm gonna recommend you read this book go
on this website do this do this we were just
sort of outright dismissed um but also we were
dismissed about apraxia and now Fast forward
a few years on and we paid for some private support.
He's now got that working diagnosis. And we had
done lots of research. Obviously, we're not experts,
but we've done loads of research and things like
Ethan couldn't breastfeed at all. He's had some
real proper choking episodes, which I think has
literally given me, you know, I can't hear someone
cough in a coffee shop without being like, someone
get that man a drink. You know, it's given me.
choking episodes, he would sort of grasp to speak
and no words would come out. If he had like a
milk moustache, he'd wipe it with his arm rather
than licking his tongue. There's so much that
was just kind of pointing to it. But again, we
were just told it was very rare. He won't have
it. And actually, that was something that I had
to sort of let go for a bit. And it was always
in the back of my mind that I was doing ACE and
autism and everything else. Now, you know, he
has that diagnosis. And the thing is with apraxia,
and it always kind of makes me a bit emotional
to say, but without specific apraxia therapy,
a child will never speak. If they have apraxia,
they will never speak because they will never
get the support they need. Because apraxia speech
therapy isn't waiting for a car to go down a
ramp. It's oral motor stuff. It's about the muscles.
It's about speech sounds. you know ironically
is actually a sweet therapist sort of job but
again because ethan is autistic with high needs
he can't actually access the apraxia diagnosis
system because it's very intensive and takes
hours and there's one -to -one eye contact and
like ethan couldn't do that but even that on
its own is very exclusive for a community who
many have a working diagnosis or should have
a working diagnosis of apraxia so They're being
excluded from something really important for
them that could give them their voice, their
spoken voice, even if they've got a voice in
other ways. You've said a lot about fear with
speech therapy. Do you think it also comes down
to other things as well, like lack of training,
lack of understanding, lack of experience? I
don't know. What is it that we need more of in
therapy to kind of... make sure this doesn't
keep happening yeah yeah well i think it's all
of the above it's fear as a result of lack of
training and lack of experience i think also
and it feels potentially slightly controversial
to say but i think it's also the views of autistic
individuals especially autistic individuals with
high needs. You know, while I've been doing all
this and doing all the research, in the 1960s,
education psychologists were still teaching that
autistic individuals like Ethan, like my son,
couldn't learn anything. And then I think in
the 1970s, a wonderful lady received an MBE because
she showed that absolutely they can. And that
wasn't that long ago. You know, we're still kind
of fighting with that. And I believe we were
dismissed from speech therapy. in very simple
terms because Ethan is autistic because he's
high needs potentially they weren't assuming
competence they weren't assuming potential what's
he why are we bothering to give him give him
an ASC device what's he going to say anyway and
that's heartbreaking to say and obviously we
don't believe that at all But I still believe
that that is, you know, ableism is rooted in
so much of society and therefore probably is
rooted within the training. So I believe from
the 1960s, but I see things all the time on my
school visits where learners are assumed because
they can't speak or maybe share their choices
or share their views are deemed to like. are
infantilized are deemed maybe they do like you
know younger things and that's fine if they choose
them but we we can't assume that we can't assume
that they can't make choices or don't want to
make choices we can't assume that they don't
have a wider understanding of the world or what
you're saying around them in fact i'm proven
every day that's quite the opposite actually
through the most incredible ways I mean our children
are so incredible that they do have all of these
barriers to learning not just their own bodies
but actually the world is a barrier as we've
spoken about before and yet somehow they find
the most incredible ways of making their needs
known and their wants known and their choices
known but my goodness wouldn't it be so much
better for them if they didn't have to find ways
and sometimes those ways hurt themselves or hurt
others And I just know that if they had another
option, they wouldn't be doing those things.
I can tell that I've loved so many children in
my classrooms that I've worked with. And you
can see that they are desperate to just have
their basic needs met. And if they had a way
of sharing those things with the world, they
wouldn't have to do those things that hurt others
or hurt themselves. When I saw AAC, all AAC actually,
all augmentative and alternative communication
methods, not just high -tech AAC, all of a sudden
we saw exactly the same as Ethan. We saw a reduction
in those hurting behaviours because they didn't
have to use their bodies in that way to make
their basic needs known and more. But I suppose
the benefit of high -tech AAC is there's no limitation
really to what's available to them. So all of
a sudden you can see what. is what they're wanting
to share with the world. And my ableist view,
and I have to admit that, I can't help but be
surprised every time by what I'm seeing. And
I hate that I am surprised because it shows my
ableist view on these children, even though I
try not to, even though I work really hard on
it. That's it. It's so deeply rooted. I have
to admit that. I think it's really important
that I acknowledge that. I hate that I am surprised
when I see a child spelling and typing. I hate
that I am surprised when I see them navigating
folders, you know, in context and using language.
I hate that I'm surprised when I see them on
BBC iPlayer and they get to the perfect point
in Bing that has so much meaning and context
for the situation we're in. I hate that I'm surprised
by that, but I am because it's systemic. you
know this ableism and that's why it's so important
to have this conversation because even somebody
that loves the children like i do that advocates
so hard that's neurodivergent herself it's okay
to admit that and i think if we just drop that
ego of it all and admit that this is a deep -rooted
problem that actually all of us need to look
inside and and kind of we're all part of the
problem i think yeah yeah i agree i agree and
my kind of aim really with it in Very simple
terms is that when a child like Ethan enters
a room, and it's not that speech therapists are
going to be experts in autism. You know, obviously
they do have a part to play in the diagnosis
process. They are consulted, but they don't need
to be experts. But when an Ethan runs into the
room, sensory seeking, not giving eye contact,
not talking at all. you know we used to call
ethan a bit of a poster boy for the autistic
criteria you know he not so much actually anymore
but we won't go into that but he pretty much
ticks kind of every box right um so when a speech
therapist sees a child like ethan they literally
pick up this folder rather than that folder right
and they do a totally different strategies a
totally different approach that's the aim really
and my petition is to make Autism -specific training
mandatory for all practicing speech therapists.
So graduates, students that are currently training,
and speech therapists that have been speech therapists
for 30 years. And just looking at everything
under the autism umbrella. So if they're learning
about speech disorders, they don't just learn
about it. They think, how does this look in autistic
individuals? Can they access the diagnosis? Can
they access the support? What can we do around
that? How does an autistic... person engage with
AAC what does that look like what would modeling
look like what would success look like and there's
everything they learn just there's a kind of
autism umbrella over all of it within that segment
so when speech therapists are met with children
like Ethan they can suggest AAC they can suggest
things but also it can give them a bit of confidence
to say actually I've learned about that I know
about that read this do this speak to this person
rather than the dismissal because they're fearful,
because they haven't learned about it through
no fault of their own. And I want to sort of
say that, that this isn't bashing speech therapists
or individuals. This is sort of the whole, the
system as a whole, I think, just hasn't kind
of caught up. How has it been recorded by speech
therapists? language therapist because from what
I've seen of people sharing it there are lots
of neuroaffirming speech and language therapists
that are shouting about your campaign can we
talk about that just while you're on the subject
of this isn't about bashing speech language therapists
it was very very supported by the speech therapy
yeah definitely and I always yeah I'm trying
to kind of share about that I mean I was expecting
touch wood I haven't got any I was expecting
a bit of backlash a bit of and i have had a couple
of slightly sort of defensive messages but we've
chatted about it and then they've signed my petition
and shared it you know i think speech therapists
are burnt out are struggling there aren't enough
of them they're working incredibly incredibly
hard And actually lots of NHS speech therapists
I've spoken to have left the profession because
they know they can't support children correctly
and how they want to do it. So I think actually
by introducing a training like this, not as extra
work, ideally to replace current kind of CPD
training they're already doing. I hope that it
actually can really give them a tool and a kind
of comfort and confidence to go to when they're
met with more and more children like Ethan. And
actually, I've now got the support and I'm allowed
to sort of say that Speech and Language UK publicly
support the campaign now, which is huge. And
it's brilliant. Speech Apraxia UK support the
campaign. So there is a... There is a need for
it. And that's been sort of incredible to have
got from all the research and to where we are
today with such big organisations backing it.
It's huge. And it only goes to prove that this
isn't just parents finding this. This is a problem
that many people have probably been battling
with, but also accepting it just feels bigger
than them. And it takes somebody like yourself,
who probably doesn't have time and capacity,
let's face it. You've got a lot of work. a very
busy line but it takes somebody so passionate
about this to start voicing it that then the
rumble start and it really has hasn't it quite
quickly it made some huge rumbles and ripples
how would you explain the impact already of of
this before it's even reached parliament yeah
well i think because i when i first shared about
our speech therapy experience I did it and it
was sort of two years or three years kind of
after it all happened because as many parents
of autistic children we were fighting for special
school you know and once everything had settled
and you could actually kind of mull and reflect
you say hang on a minute this was is terrible
and we've had to do kind of everything shared
a little bit about it and shared you know we
were told until Ethan talks we can't help him
to talk without words, we can't support you.
I still remember, and it was someone visiting
our house, still remember the look on a speech
therapist's face when Ethan was running up and
down this room just endlessly and endlessly of
just looking at him like he was some kind of
monster that she had never seen before. And that's
in his safe space. Yeah. And he was just being,
he was being essentially seeking autistic charge,
you know, nothing. Right. Nothing untoward, nothing
scary. Yeah. And that's when there is always
this sort of without words, we can't support
you. But actually as well, and I have been asked,
and I think it's probably important to say, we're
not discharged from speech therapy. We were never
discharged. But actually, I don't know if that's
better or worse, because instead all we kept
getting was letters with impossible targets,
impossible strategies that would never... never
happen. And then occasionally a speech therapist
might go into school and then they'll write something
about how well he's doing on AAC. Where were
you, you know, three years ago? So, you know,
the support isn't there. We've never had the
support. But in terms of the sort of impact of
it now, those are families, so over 500 families
have shared their lived experience with me and
some sharing the same until he talks, we can't
help. Other people are told they've got too many
words, so we can't help. Other people have said,
oh, they're situationally mute and autistic,
so we don't know what to do with that. Some other
phrases such as, you know, speech is the least
of his problems, one person heard. So just terrible
kind of across the board. A few failures for
our autistic community. yeah across the board
in every way huge face i mean 500 payments to
actually have the time and you know that it's
probably a hundred times more than that that
have been yeah by uh yeah and i've had you know
thousands of comments at the eye paper have been
really supportive and we've had a couple of articles
and videos with them and that they're getting
and that was interesting because that's just
put out to the public You know, when I share
on my Instagram, I have to be aware that I'm
talking to like my community and lots of non
-speaking children, parents will follow. So actually
when it went out to the public, it was interesting
and I still was getting all the stories and all
the comments, you know, which that was a real
kind of defining moment actually of thinking,
you know, this is huge. This is a nationwide
problem. And now there's a petition that is gaining
signatures. We've got an early day motion where
MPs can sign it in support. And that's got support
from Labour MPs, some of which are on the APPG
for autism. All of the Green Party MPs, which
I know is only five, but all of them have signed
it. So it's got their support. It's just kind
of gaining traction. And I think a potential
next step would be, which has been mentioned,
there might be able to be a mini debate within
Parliament and that can kind of force the right
minister to sort of get involved. So, yeah, things
are really happening, which is really exciting.
It's so exciting. If anybody listening to this
is hearing about this, either has. a story to
either share with you or is totally sold. Of
course, this is the right thing to do and want
to get involved. How would they do that? Yeah,
so if they message me on sort of any social media
really, but Instagram, Spinning World of Autism,
and how they can share to start off with is sign
the petition. I've also got a really easy email
that they can send to their MP to ask them to
sign the early day motion. But I've also got
a WhatsApp group, which actually has a couple
of speech therapists in, as it is only like five
or six of us, but the real kind of core kind
of people that have been doing this right from
the start. You know, if someone has got some
extra time to give and wants to be involved,
they can be in there. One of my followers, actually,
she might have an opportunity to raise a campaign
on BBC Question Time because she's in wherever.
Andy Burnham is and all of that that's going
on. And she potentially might be able to raise
a campaign there. So kind of any ideas and any
support people can give. But sharing with your
MP, I think, is one of the most important steps.
Fantastic. And great that you've got a template.
So even if you've only got a few minutes or not
even, if you've got 30 seconds, use the template
and send it to your MP would be. incredibly helpful
and makes such a difference to these this very
important part of our community that are completely
being let down by not in just this but by let
down in lots of ways and this is a huge part
that that you know could really help because
ultimately the more autistic voices, and I don't
say voices meaning speech, I say voices in a
lot of different ways, but the more autistic
voices we are hearing, the better everything
we'll get for our autistic community. By removing
their voice, it's removing a lot of their desires,
needs, wants, wishes, feedback, and all of those
very important things. Yeah. And I always say
that, you know, this isn't just about communication.
This is Ethan's life. within that it's communication
supports his mental health his friendships his
connections his opportunities whether that's
jobs or internships or you know it supports every
element of his life and i think that's just really
important to really kind of shout from the rooftops
it supports everything for an autistic individual
Yeah, by limiting communication, you're limiting
everything. And I think that is an incredibly
important place to end this conversation because
by offering communication opportunities, you're
then opening up opportunities and everything.
And that's the point we don't want to limit.
at this wonderful, really important community.
Thank you so much, Laura, for joining. I will
leave all of the links to everything down below.
I will leave social media links, website links,
the template to send to MPs and anything else
that Laura shares, I will keep it up to date
so you can very easily get involved with this
incredibly important campaign. Laura, thank you
so much. And please, please keep sharing on your
incredible social media page, your beautiful
personal journey and also everything you're doing
with the world. It's such a... joy to see such
an incredibly dedicated family and incredible
progress that Ethan is making in so many ways
it's it really brings hope to me that that it's
possible and it's worth to keep fighting because
so often we can be stuck in this bubble like
you said social media you know we can end up
in like an echo chamber we're all doing the same
things and so often our bubble is burst in the
real world with just a complete lack of understanding
so please keep sharing and yeah definitely go
and follow spinning world of autism it's an absolute
joy to uh to watch thanks laura