Faria Arsh: How she started the Autism Foundation in the U.K.

Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide?
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Joining us today is Faria ash. She was on this
podcast about a year and a half ago. She shared
powerful insights about autism, advocacy and the importance of community.
Since that conversation, she hasn't just continued the work, She's
taken it to an entirely new level. She is now
the founder of a growing autism foundation in the UK
dedicated to empowering individuals on the spectrum, supporting families and
building real inclusion, not just awareness. So before we dive
into our episode, we'll be back with an uninterrupted show
read after a word from our sponsors. Thanks for joining us.
Today, No, thanks for having me. Thank you.
It's my pleasure. Tell us about your journey since we
last talked.
So since we last I'm it is probably at the
beginning of the launch of my book, Toilet Training for
autic and send Children and Adults. Yes, so I had
recently launched my work and we talked about that in depth.
And since the launch, you know, I have started a
social enterprise called the Autism Foundation. And also I have
now started a new project. Basically I want to get
into care sector and I am raising friends to start
a care facility in the UK.
So give us a little insight. What inspired you to
create the Artism Foundation.
So the success of my book, which you know is
based on the real life story of my daughter Afia,
who read eighteen next month.
Oh wow, so she's going.
To turn eighteen years early. Yes, I know, I can't
believe where time is flying by. So it's based on
her real life story. It's based on how I created
a method for her to toilet train her at home,
failing all support from the you know, health sector, the
education sector, because nobody knows how to toilet prain an
autistic person, let alone a severely autistic person who's completely
non verbal as well. So after creating that method and
launching the book, and the success of the book led
to the formation of Autism Foundation actually because people started
asking me can I do training workshops which are linked
to the book, and I was like, yeah, of course,
you know, I would love to do that. So I
started doing those, which went really well, and then some
organizations they approached me saying, we really need training on
autism for the community and for professionals as well, and
they said, are you able to develop training for autism.
I said, of course I can, because I'd been working
in special schools for a long time and now I'm
an aidors to train assessor as well. So then I
develop autism training which kind of dwells into autism communication,
social interaction, repetitive behavior. I also look at sense for
impairments because that was very co ordinate. Goes hand in
hand with autism. A lot of people miss sinsre impairments,
So I talked in depth about sensor impairments and how
they affect an autistic person. And then the second part
of the training is purely based on behavior. How can
we support an autistic person to overcome challenging behavior because
autism comes with challenging behavior as well, which again a
lot of people may not understand or realize that how
much challenging behavior is affecting an autistic person's quality of life.
So both my trainings are based on improving the quality
of life of these autistic people and their families and
professionals as well.
How long has it been since you launched the Autism Foundation.
I launched it in October twenty twenty three, so I
had already been doing my workshop since the launch of
the book, which was in March twenty twenty three, and
then I made Autism Foundation official in October twenty twenty three.
From October twenty twenty three, now, how have you seen
it evolve and grow since the early beginnings of the foundation.
It has evolved a lot because now we have a
larger community, we have different people approaching us because I
get a lot of prairies from care homes as well,
So there are loads of care homes who are, you know,
kids bring for autistic people and sadly, again we come
across the same thing, which is people who are working
with autistic young adults or young children, they don't have
adequate training on autism and how to support that autistic person.
So that's when these organizations and care homes they approached
me and I delivered my training and I've also started
in advocacy service because I realized a lot of parents
and their children were being let down by the system
because parents don't understand the system that.
Well, can you give us an example of what you
mean when you say they don't understand the system?
For example, you know, it could be school reports or
an EEDCP report, we have that in the UK. Here
it's the Education and Healthcare Plan. Filling all of those questionnaires,
doing all of that is a lot of extra work
to start off with for a parent who's already caring
for an autistic child. But how to navigate those things
that's another difficult area because not every parent is going
to have all the time in the world to do
research and how do these bombs, what to say in
the EHCP plan and so on. So that's where I
have been helping parents to get the right support because
when we fill in the questionnaires properly, when we do
everything accordingly and how it's supposed to be, then these
children get the right support. So that's what I have
also started doing.
How do you help bring more community awareness to autism
not only here in the US, but the UK and worldwide.
People still have this perception of what they think autism is. Yeah,
but in real life it's not even close to what
it really is. So how do you help bring that
perception to the community so people can understand what autism is?
Again, this is what I will always say, Knowledge is power.
We only equip ourselves with the right knowledge as well.
At the same time, because there's so much out there
these days, especially with social media, anybody can say anything,
but is it actually true? You know? What is the
basis behind that? Was the research behind that? Are we
doing enough research to find out that message that I
heard on social media or on Instagram read? Was that
accurate enough? So that comes down to us really as
a community, we need to take that responsibility that we
need to educate ourselves properly, and we only need to
trust the reliable sources like yourself, because you do your
research before you have your guests on, and you basically
are very well aware of what topics to talk about,
so that you are spreading the awareness about autism. But
you're also spreading the right awareness. You are not going
on the basis of whatever anybody might say so to us.
But I try my best through social media or you know,
through any means that I have that I can spread
as much awareness as possible about autism. A lot of
people when they hear that Ahya has autism, they automatically
ask me, oh, what's your special interest? What's your superpower?
She must be so good at something specific because I
know autistic people they excel in one area. Well, yes
they do, but only a few autistic people excell in
one Yeah, okay, not everybody. Autism is not a superpower.
Whenever I hear this people saying, oh, autism is a superpower,
it really makes me upset because you're kind of highlighting
just a few autistic people who are excelling, which is
amazing and I'm so pleased with them. But for the
rest of the autistic people who are struggling every single
day due to the most simpler things, what about them?
Because all of these like people who don't know anything
about autism, all they see is those clips of autistic
people excelling in one area. So when people ask me,
it really upsets me because you know, we are undermining
the difficulties Afia is going through every single day. It's
really hard for her, you know, begins to impairments. She's
completely non verbal. I mean, imagine if somebody were to
put a tape on my mouth and I'm not able
to explain myself or ask for things I want. How
frustrating that would be. So that's yeas life, and every
autistic person's life who's nonverbal, and especially even those who
are verbal, they struggle to communicate. So imagine putting a
you know, tip a mastering tape across her mouth not
being able to communicate. That's an autistic person's life every
single day.
Yeah, exactly. If you was to pick one thing when
a person is starting to understand autism, they might be
finding that they are autistic, their child is autistic. What
is one thing they could focus on that could help
them so they could continue their journey to moving forward
in life.
Again, it will be pretty individual because some autistic people
will suffer with specific sensory impairments, for example, loud noises,
and they will be fine in other areas of sensory
issues or sensory integration. It's very very specific to each
autistic individual, if we were to put it like that.
But when we look at autism, we always look at
three areas. So you know, I always knew this, but
when I was doing my adors to assess a training,
it was reconfirmed to me that what I'm doing and
teaching and what I know is accurate because during the
assessment of autism, we look at three areas. We look
at communication, real look social interaction, and we look at
repetitive behavior. So everybody on the spectrum, whether they're level one,
level two, or level three, they will have impairments in
these three areas. So even the most verbal autistic person,
they may still have communication difficulties. So communication doesn't just
mean talking, it also means understanding. They may be able
to talk, and to us it may seem like, Okay,
this person is many getting just fine, but are they
understanding what I'm saying? Are they comprehending everything that I
am saying. Are the understanding and applying that in real
life strategies? Probably not, because they have that communication with culte.
Yes, one of the main things about this podcast is
to help people understand and learn more. Yes, I believe
every week I can have a listener that is just
learning about autism. Can you explain the levels of autism
to these people that might not understand it?
Of course, yes. So let's start with level one, that's
basically described as mild autism. Some people get offended when
I say mild because apparently we're not supposed to use
the word mild, moderate and SIBIA anymore. I don't believe
in that. If it is mild level one, you know,
just just say say. It is just easier for people
to understand Level one is mild, isn't it. So if
I were to look at somebody who is on level one,
they would be veribble most of the times. So they
will be communicating, they'll have some speed, But as I said,
communication doesn't just mean speech. You know, they may have
some impairment to understand what everybody's saying. They may take
things literally all the time because they won't have the
understanding of you know, looking at it from different point
views and so on. They will definitely have social interaction difficulties.
I've never come across one autistic person who doesn't struggle
with social interaction. So even if you see that their
communication is good, I will know that person is autistic
with their interaction.
Do a lot of people struggle with that interaction.
Every autistic person really struggles with their interaction. And either
they don't know how to start the interaction. Because you
and I, you know, if you bump into each other,
we will we will start small chalk, Oh, how are
you to any long time? No see? And so on.
We can start a conversation without even thinking. But an
autistic person they may bump into the go hi, far
you and then what's next? Like they don't know what
you say and how to keep that conversation going unless
I talk about some thing of their interest, then they
will chalk forever. So every autistic person, they really struggle
with interaction, even if they have the communication. And then
the third area that we look at is the repetitive behavior,
so they may say the same thing again and again.
And autism also comes with anxiety. So people who are
on level one, they are aware that there's something different
about them because when they go out, they feel anxious.
They're aware that, Okay, I'm not exactly the same as
everybody else. My communication is a bit different, my interaction
is a bit different. So they become really aware that
they are different. Although they might be putting up a
mask and blending into the world, but they're internally aware
of that fact. So that creates a lot of anxiety
within them. So again, you know, we need to look
out for those scients. If anybody is listening who does
not know what autism is and what level one is,
those are the things that you can look out for.
You know. Communication and social interaction is the main one
that you will see and you will be able to
support an autistic person from the crowd from the interaction.
And we come to level two. So again, you know,
the more severe you are going to go towards the spectrum,
then the more kind of difficulties you will have, the
more impairments, and the more sense to impairments that you
will see in an autistic person. So I gave you
an example of level one with communication and social interaction.
Just imagine that getting a little bit worse, you know,
so the communication will be a little bit more poor,
and the interaction will be harder, and they may have
more sense to impairments because they may really struggle in
a supermarket because it's a crowded area. There's more noises,
there's more smells of different foods and so on. And
then come into the severe side of the spectrum, those
like Afya, they're completely nonlobal. You know, some severely autistic people.
They may have a few words here and that, but
it's not enough for them to communicate every single day.
So as we go across the spectrum, the difficulties will
get more and more and so on.
You just mentioned anxiety. Yes, I recently expanded my podcast
to include mental health. I did that because I found
that a lot of mental health issues overlapped with autism.
Of course, some people just have anxiety, they get their
medication and it is under control. Others have anxiety and
their autistic as well. Yeah, how do you number one,
diagnose the overlap? Once you find that overlap is there,
how do you help that autistic person better control their anxiety?
Yeah, So the statistics show that more than half of
autistic people suffer from anxiety. So those are the steps. Basically,
anxiety is really really high in the autistic population. That
is a given. When it's wort managing anxiety. There are
a number of strategies we can put in place to
manage an autistic person's anxiety. So this one area I
cover in my autism training and I emphasize on that
quite a lot, which is the reputitive behavior, which I
talked about a few times now. A lot of people
think the repetitive behavior of an autistic person as an
impairment or as kind of like something negative. For example,
the autistic people, you know, anybody who has autism, they
thrive on doing the same thing again and again. First,
it makes sense to them because they're aware of what's
going to happen next, and that keeps the anxiety at bay.
So it's easy for them to do the same thing
again and again, follow a specific routine, and that helps
to keep the anxiety manageable. A lot of people think
if the autistic person is following a specific routine every
single day, we are making them more rigid. But I
look at it from another point of view, a completely
different point of view, and I say, look, autistic people
will always want to follow a routine because it makes
sense to them, and hence, let's use that to help
them manage their anxiety better. And we all are creatures
of habit will occup us all human beings. If I
were to ask you, Tony, how do you get out
of bed every single morning? How do you get ready?
Now you're forced to think how you do that? I
can bet on it that you do it the same
way every single day without been thinking sure, correct, right, yes?
And we all do that. The things that we do
every single day, we are not even having to think
about it. We do it on autopilot because we all
rely on structure and routine without even realizing. You know,
a long time ago, we sent that structure in our
lives and we follow that. So it's the same for
autistic people. I come across a lot of professionals and
teachers and also at home. Parents are really concerned and
teachers are concerned about the fact that this autistic person
is really rigid and they should adapt, change and they
should do things differently. But I say, why what if
I come to your house and change everything? Would you
like it? No, you wouldn't. Nobody would because we all
like a routine. We all rely on structure, but autistic
people rely on structure more than anybody else because it
makes sense to them. If they've done it a few times,
they know the pattern of doing it again, and they
will carry on doing it, and it helps the anxiety
because they're not expecting the unexpected, you know, it really
helps the anxiety. So putting in a routine, a structure
in an autistic person's life is the best way to
manage their anxiety. I would really emphasize this to all
the professionals, all the parents that if an autistic person
is rigid and they want to do things in a
specific way, let them it makes sense to them. Unless
it's actually creating a very negative habit and it's becoming
a hindrance in their lives and everybody else's life, then
of course change that. But if they are managing their
life better, they're happy, the anxiety is lower, let them
do it.
There's the harm in that exactly. Now, coming back to
your foundation, when you start a foundation, it is not easy, No,
not at all. What has been one of the toughest
lessons you've learned in doing this. You started this foundation
understanding autism because of raising your daughter. So because of that,
you knew certain things would happen and you understood it.
But when you're starting a foundation and you're working with
other people, there's challenges. You face bumps in the road.
So what is one of the toughest lessons you've learned
in this journey.
My toughest lesson has been dealing with authorities. They have
been the most difficult. Ever. My easiest clients are parents
because I understand where they're coming from. They know I'm
a parent of a severely autistic child, and we jail
really well and so on. I work with a lot
of schools, I work with as I said, care sec sectors.
All of those times they have been easy enow. But
the toughest journey so far has been dealing with authorities
because authorities are so rigid in their own way of
not wanting any change. Because here I'm bringing change. I've
launched this book on toilet training. Authorities are not happy
about the fact that, oh, the Nates did not come
up with a book. How come this mother has come
up with the book. So authorities are finding it very,
very difficult to accept. I have had some people from
the NHS who recognize how good the book is, how
good the method is. They have welcomed me into their
hospitals and training other people over there, which has been
really nice. But the wider authority getting my message across
to them is really difficult because they're so rigid in
their own ways and they don't accept change whatsoever. So
that's been a huge challenge for me.
I can understand that any other challenges.
Another challenge is now, as I said, I have started
a go fund Me page for to branch out in
the care sector and raising money for such a good cause.
Actually this is a really good cause because we need
to provide a safe place for autistic and disabled people
and currently I'm sure Tony you are aware as well.
In the USA, in the UK, we see this in
the news all the time. There is so much abuse
happening with aautistic and disabled people in these care homes,
in these care sectors, and for parents like myself, we
live in the fear of of course, we're not going
to be in this world for the rest of our lives.
What is going to happen to our children after we
are born. We live with this fear every single day.
We see this in the news that these autistic and
disabled people who literally cannot speak and defend themselves our
being abused. So what hope do we have. I am
basically trying to create a safe place for these autistic
and most wonderful people in our society. But sadly, not
many people are even supportive of this. Everybody turns a
blind eye because as soon as we see some abuse
on the news, we just change the channel. We're like, Okay,
it's too hard to watch. I'm not going to watch
it anymore. Change the channel, brush it under the world
so that it's not there. Nobody knows about what's happening.
Just parents like myself. We are really aware because it
affects our children and us. We watch that news doesn't
matter how hard it is. So despite the fact that
it is such an important cause, it's such a noble cause,
raising money has been really difficult. It's sad in a
way because it just shows how much the world cares
about vulnerable people. Sadly, you know, we are on our
own to be honest at the end of the day.
Yeah, that's true. Whenever you hear a story, lots of time,
stories will stay with you. Yeah, is there a child
or a family that reminds you of why you do
this work, even on the harder days.
Is there a child or a family?
Yeah, you know what.
I have come across so many amazing parents, and I
know their children through them. I don't directly get to
work with the children because my primary role is working
with the parents professionals and you know, other care sectors
to train them on autism how to cater for people
with autism. But as I said, my favorite and my
best times are these parents. And is there a specific parent.
I may not have a specific one, but I've got
so many amazing parents and we form such beautiful relationships
because we all understand each other. We have fromed the
beautiful community for each other and support network each parent.
This is what I would say. They're working really hard.
They are literally kind, the best and my kid, you not.
I get to hear stories such as the child has
been awake since four o'clock in the morning, the parents
have been on the go constantly, the mom hasn't had
a chance to have a meal, and the child constantly
self harming and whatever, and they've only had four hours
of sleep. It's like these stories which are constant, and
it's happening every single day. But the resilience these parents have,
it's believable. It's so heart warming, it's lovely. But at
the same time it's just a sad story that these
people are going through so much, But at the same
time their resilience is really inspiring.
April is Autism Awareness Month and this episode will be
in that month.
Amazing.
What do you feel is true inclusion when we have
autism Awareness months? It goes so far past being aware
of it. It is real inclusion in school work and communities.
How do we get this across to people that there
needs to be more understanding than just more awareness.
Yes, of course, and I really like that, Tony, what
you've said. So there needs to be exclusively as well as,
you know, alongside awareness, because awareness on its own, what
are we achieving if you're not actually taking the next step,
isn't it? So we have to dig the next step,
which is going to make a real life impact in
an autistic person's life. Otherwise, awareness on its own isn't
really making an impact. To be honest, what I would
say is ask the autistic person if there were lin
up or ask their parents and families, how can we
make this autistic person more inclusive in our community. That
is the best way, because let's say you know, I'm
a Muslim woman and I don't get to go go
to the moss or somebody who is a church go
go er. They may not be able to go to
the church because they are caring for their autistic son
or autistic daughter on a Sunday. If the church or
mass approaches them and they go, if you would like
to come, we would love to welcome you. How can
we make it more inclusive for your daughter or your son?
Then I can give them tips and advice. I can say, actually,
can you tell everybody to manage their noises, or can you,
you know, dim the lights a little bit because my
child is quite sensitive to light, or can you have
specific snacks because my child really likes it. Then they'll
be happier if they see those snacks are there. Every
autistic individual is different, and to make the community more inclusive,
we need to take this first step off which out
to these autistic people and their families and saying what
is the bare minimum we can do to make this
autistic person and you feel more included in the community.
Now you've been doing this for a long time. You've
been raising your daughter almost eighteen years now. With all
the information that is out there about autism, all the
conversations people have had about autism, what is the one
misconception that you think is still prevalent that needs to
be addressed.
As I was saying before, this comes from my mind
again and again, the autism is a superpower. That misconception
really needs to go. Even if he the most able
autistic person who's thriving, who has a special interest on
social media, and you know, been doing very well in
their lives, even if you were to go and ask them,
do you think autism is a superpower? They wy st No,
because they still have those challenges with anxiety. They will,
They're bound to have challenges regardless of how they present
themselves because they have autism, and uh, yeah, it's not
a superpower. I'm sorry guys, if in this offriend somebody,
I really apologize because that's not my intention. This misconception
of ortism being a superpower. I think that needs to
mis stopped.
How do people find you.
So they can go on my website www dot Autism
Foundation dot co dot uk. I'm available on social media,
so Facebook, if they type in my name Farrier ers
they can find me there. If you type an autism
foundation on Instagram, you'll find Autism Foundation. And I'm also
on LinkedIn with my name Farrier Erh and we also
have an Autism Foundation page.
What do you see in your future? What is next
for your foundation? What do you see on the horizon?
So my driving force at the moment is working and
expanding into the care sector. And I know it is possible.
I know it's possible to hire good people who are
compassionate to work with autistic and disabled people. Well, I
know that I can personally provide them adequate and high
quality training so they're well equipped to support an autistic
and disabled person. And I know that this change is possible.
It's not profit science, you know. We just need to
invest money and time into the right area. So we
are enhancing the life of the service user. So that
is my big counted coming up. And I'm working really
hard behind the scenes. Not a lot is happening in
front of the scenes, Like at the moment, not many
people can see what I'm doing to do with the
care sector, but I'm having to work a lot behind
the scenes and hopefully everything will start SERVI scene very soon.
Yeah. I hope so too.
Well.
This has been great, great information, great conversation. I really
appreciate you taking the time to join me today.
Thank you so much for having me. It's been a
pleasure speaking with you, Ronnie. Thank you.
Oh, it's been my pleasure. Thanks again. Thanks for taking
time out of your busy schedule to listen to our
show today. We hope you enjoyed it as much as
we enjoyed bringing it to you. If you know someone
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