Faria Arsh's Inspiring Journey of Hope and Resilience inside the Autistic World

Welcome to Why Not Me the World? Podcast hosted by
Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee. Join
us as our guests tell us their stories. Some will
make your laugh, some will make you cry. Real life
people who will inspire and show that you are not
alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me the World.
Today's guest was born in India, moved to England twenty
years ago, has an artistic daughter, and has recently written
a book. I am pleased to welcome Faria arsh Hi.
Thanks for having me. I was just listening to your
podcast and your introduction as well, and it is absolutely amazing.
I'm really really learning so much from all of it.
Thanks so much for your kind words. I really appreciate it.
So you was telling me that you have an artistic daughter.
Could you tell us a little bit about her?
So my daughter, who is fifteen years old, she is
called Afia. I started to realize that there's something missing
because I've got another daughter, Piza, who's eighteen years old now,
and because Afia was my second child, I knew the milestones,
and I could see that there was something missing. And
when I say something missing, it was basically interaction. So
Afia wasn't interested in any interaction. Whatever babbling she was
doing at the age of it, that had stopped by
she was twelve months old, So I was getting concerned
that there is something missing here.
Yet So at that point, what options were you thinking of?
So I decided to take her to the GP. When
she was fourteen months old, I raised my concerns with
the GP. The GP was very nice and she heard
me out and she referred as to a pediatriction. By
the time you saw the pediatriction, she was already eighteen
months old, and by that time it was very obvious
that Afia has some form of disability. The PEDITRITIONI didn't
want to confirm autism, but that was still on the cards.
And by the time Afia was two, it was very
obvious that she has autism because she had no speech,
she had no social interaction skills, and she had repetitive
pattern behavior and she was playing in a very very
specific way, which is very classical autistic. So she was
basically fitting in the classical picture of a child who
has order them.
Okay, So basically you found out or she got diagnosed
that she was autistic at two years old, Yes, from
two to let's say seven or eight years old. What
was your plans to help her and did she react
to what you was doing?
So I started looking at special schools because I was
sending Afya to a private play group just for a
couple of hours twice a week. And as soon as
I started sending her dad, this was just after she
turned to I realized that she was really standing out
and she wasn't mixing with other pupils, and she couldn't play,
she couldn't interact, and she was really standing out. She
was very, very different to everybody else. And I realized
that it's not going to be the right place for
her because she wasn't getting the attention she needed to
be safe as well, because she would be going in
a corner to isolate herself. A lot of autistic people
don't like crowds and the noise, and you know, if
they were all in the playground, afa would be somewhere
far away from all the children, all the pupils, because
she did not want to be in the crowd. So
I very quickly I realized that Afia is not going
to thrive in a mainstream setting.
So what did you do at that point?
In the area we live in, we're very lucky that
there is a very good special school nearby, so I
managed to get Afya into that special school. By the
time she was two years and eight months. She still
hadn't got a diagnosis by this time, because in England
things work in a different way. Pecations don't like to
give out diagnosis before the age of three, at least
that was the case at that time when Afa was
getting diagnosed. So even without the diagnosis, because of her
profound autism, we were able to get Afya into a
special school. And I would say that was the best
decision I had ever made because the difference was phenomenal.
What was some of the differences that you noticed right away?
They were not just supporting Afia, there was supporting me
as a parent as well, because when you have a
child with autism, it's completely new. You haven't got a
clue what to do. You just don't know where to go,
who to ask, who to speak to. So special schools
are really really good and they're very well equipped to
support pupils and their families as well.
Okay, well that's great. So now she's fifteen years old,
has she developed any social skills and is she blending
in better now that she's in a school is helping her?
How is she developing that way?
So I would say no, okay. Afia is a child
who is very very classically autistic, but not just that.
She falls on the severe side of the spectrum. So
as we all know, autism is a wide spectrum. You know,
whoever has got autism, they can fall anywhere from mild,
moderate to severe side. These days they call it level one,
level two, level three, no matter what terms you use.
Alfia falls on the severe side, which may be called
as level three these days. But basically that means she
still does not have any speech, and I don't think
she will ever talk, but never sain ever but looking
at her now, I don't think she will ever talk.
So she doesn't have any speech.
So what will that do far as interaction with other people?
Do you still have that hope?
She has very very few social interactions with anybody really,
and then generally on her own terms, so only when
she wants to interact, and that is when she wants
something from me. Or her class teacher, or somebody else
in the room for example that is food, or she
needs something, or she needs to go to the toilet,
or she wants to get changed. Then she'll come and
interact with me in a specific way to make her
needs met. Otherwise, there's no reason for Afia to interact
with anybody else because she does not see the point
in any sort of interaction. And she has been like
this throughout her life. So before your question was, from
the age of two to seven, has there been any improvement?
And from the age of seven to fifteen has there
been any changes? If I were to look back in
Afia's life, there have been very very few changes. Because
of the way she presents her autism and because of
the way where she falls on the spectrum.
Does she have any speech at all yet.
So she still doesn't have any speech. Social interaction is minimum,
and she has a very very specific way in which
she likes to play or live her life. Because people,
again who have autism, they like structure, they like their
routines because they thrive on that. So Afia loves to
follow the same routine every single day. She likes to
do the same thing every single day. That helps her
to keep that makes sense to her. Any changes in
her routine, they don't make any sense to her, and
that's more likely to distress her, and hence she likes
to keep her routine the same.
I've heard from several different people that have children that
are nonverbal that they've used either computers, iPads, or whatever
it takes to help that communication. Is that something that
Afia has used at all?
Yes, definitely. So when Afia started her special school, there
was a system called Picture Exchange Communications System. It's called PEX.
Now this is a very well established system all across America, England, Australia.
It's used for kids like Afia who are non verbal.
So basically, this method teaches a child to recognize the
picture what that means, and when they want something specific
to go to their picture book, choose the picture they want,
and come to an adult and give it to the
adult so that I can then give whatever Afia wants.
For example, Afia wants chocolates, and so a picture of
chocolate will be in her picture book, so she needs
to then independently go to the picture book find whatever
she wants. So she wants chocolate, She'll get the picture
of the chocolate to me and then I will give
her the chocolate. So Afia learned the system. There's a
very very specific way of teaching this to autistic pupils,
which I learned at the school as well as a parent,
because I wanted to implement that at home. Whatever they
were doing at school, I wanted to do that at
home as well. So we taught that system to Afia.
And she's been using her pegs book for a very
long time and she's a very good pes user.
So now that she's learned that and she's gotten older,
do you think that the iPad might be something that
might work for her?
So we're trying to move to an iPad, and these
days there are quite a few apps on iPads for
children like Afia. Again, it's a similar concept. There are
different pictures, and on the iPad it's a bit easier
because if I want to add a picture, I can
quickly take a photograph of that object and I can
add that picture onto this app and then Afia can
just click the app and it will speak for her. So,
for example, if she wants chocolate, she'll go to the app,
She'll find the picture of the chocolate, she'll click on
that and it will speak chocolate for Afia. And when
the iPad speaks for her, then I can hear it. Okay,
she wants chocolate, and I go and give them chocolate.
That's really good. So you have an older daughter, So
how does Afia and your older daughter get along?
So the interaction was really good between Fires and Afia
when they were younger, because Afia was a lot more
smaller in size, and we were able to maybe put
ten a pram and do things with both the sisters together.
It was a lot easier to do things with them together,
and hence the interaction was there, and it was a
nice form of interaction, not the same that you would
see with other siblings who are neurotypical. It was more
like Faiza was a caring sister towards Afia. But as
Afia is getting older now Afia does not want that interaction.
And then Pisa is also getting older. She is an
eighteen year old now, she's got her own life, her
own friends. So the sisters have not parted ways, but
the interaction isn't as much as I would like to see.
But at the same time, they're both are teenagers. They
want to be in their own rooms, and that's typically
what you would see in any household with teenage Kiams.
I think that's so true. Teenagers go into their own
little world and then it takes a while before they
come out of it exactly. Okay, so you find that
Afia is indeed artistic. Do you have any support system
that helped you, either from your family in India or
your extended family now in England?
So I don't have any family here. I've been living
in England for twenty years now. I got married to
my ex now he was my husband at that time,
so we went to a divorce for three years ago.
So when I got married, I moved here, I had
my kids. My ex husband's family is also in England.
But when a child is diagnosed with autism, getting that
support network is very difficult because people don't really understand
what autism is. Even if they do, they don't really
know how to help a family who has got children
with autism. And everybody wants to have their own input.
Everybody's got their own ideas, which is absolutely fine. This
happens in all families, but when a child has autism,
it needs to be very very specific. And this is
where I have struggled time and time again because me
as Afia, as mom and Afia's primary care, so I'm
not just her mom, I'm a primary care.
That's so true.
I often say this, nobody is the expert on child
other than the primary care because the primary care knows
exactly what the child needs. Because I'm looking after Afia
twenty four seven, I know what her needs are and
I know how to put those needs in place for her.
So if people want to help Afia, they need to
be able to listen to what I'm saying so that
they're helping Afia and then they're helping me as well.
So this is where families clash. This is where disputes
happen because if I'm saying this is what Afia needs,
people often misunderstand that and it comes across that, Okay,
Faria is just being difficult for the sake of being difficult.
I don't think Afia needs this, And this is where
the disputes in the families are created because people are
not understanding the co needs of a child who has autism.
That's so understandable. This is why you just said it's
so very important and people around the world need to
hear it. Autism affects every person differently, and parents are
trying to figure it out and adapt and understand it,
and it's just one of those things that everyone is different.
Autism is not an easy thing for the person to
deal with it. Like I said, they struggle with communication,
they struggle with interaction, They have very very specific patterns
of how they want to live their lives. And then
the sensory overload, it's the noise, it's everything else around
them that can be so overwhelming and that can take
over their emotions. So it's not very easy for an
autistic person to be living in everyday world like it
is for you and I. So everybody has to be
really mindful of this autistic person that they may be
going through a lot, even if they're not showing it internally,
it can be extremely challenging for them.
Sure, I get that, so Afia is nonverbal. Does she
have anything that she likes to do, like going shopping
with you, going to the grocery store, anything that gets
her out of the house and exposes it to the
world that might be able to be good for her.
So Afia has changed a lot in the past five years.
I would say as Afia was a little girl, from
the age of three going up to the age of ten,
she was she was more acceptable and she was happy
to come out with me to the grocery store. It
may not be for a long time, but you know,
short period of time, and I would keep it short
and sweet, just for the sake of Afia to get
the experience of going to the grocery store and maybe
getting the experience of having a family meet together. So
we had to plan everything very very meticulously.
Okay, so you're planning that, and that puts her about
ten years old. So at ten did you start seeing changes?
Between her age of ten and to now of being fifteen.
Her needs started to change, And I would put that
down to puberty. Now, a lot of kids who are
going through puberty, whether they're boy or a girl, those
changes are happening within their bodies. We can't physically see
those changing those changes happening, but those changes are happening,
and that is going to have a massive impact on
their emotional wellbeing. And these people, they cannot express how
they're feeling. So just imagine any neurotypical child going through puberty.
They really struggle with the emotions. But now this is
happening to a person who is autistic, who is not
able to communicate, who's not able to express and then
that basically comes out in a form of behavior, a
very challenging and difficult behavior.
Sure, and this topic is something that we definitely need
to put out there because a lot of people don't
think about it. They just think about kids growing up,
going through their formative years. They don't really think about
this as being a challenge. And you've just brought it
out there, and I think it's something we just definitely
need to talk about. So once she started going through
these changes and she hit fifteen, what else changed?
She did not want to access these activities in the community,
which is going to the supermarket having a family meal,
so slowly but surely, I had to stop those activities.
I still wanted to keep going, but I had to
make a decision because by taking her to a grocery store,
it was causing Afia more stress. She was getting really
distressed and she did not see the point and why
she's there, and she wasn't able to cope with the
noise and everything else around her. So then I had
to do one day, sit back and have a look
at what is Afia gaining from going to the grocery
store If she's going to be really distressed and she's
not getting anything positive out of it, She's not learning anything.
Is there any point in me forcing that on Afia?
That makes so much sense, And I think you made
the right decision there. So, as many people hear about
autistic children, they're prone to have meltdowns. So was you
concerned at all that Afia might have a meltdown, whether
it be at the grocery store or wherever you might
take her, And was that a big concern of yours
or was she prone to that?
Absolutely, she definitely falls under that. So she will have
lots of meltdowns, and she has been having them for
a very long time, but as she's getting older, they're very,
very challenging to manage because now she's bigger, and if
she's lashing out, she can genuinely hurt somebody, not on purpose,
but somebody can get hurt and she can hurt herself
as well in that process. That's why I was saying
I had to really take a step back and decide
whether accessing these community activities was it benefiting Afia. Also,
there's a big safety factor here. If she has a
meldown in the middle of a supermarket, she could be
lashing out at me or anybody else around us. So
I need to make sure that Afia is safe first
of all, and other people around her are safe as well.
Absolutely, and again you've made great choices because you have
to not only watch out for her, but all the
people that she might come in contact with. So I
understand that you have worked at some schools and one
in which Afia was part of as well.
Yes, so I have been working with kids who have
special needs for a very long time. So I decided
to start my work at the school Afia first started
when she was two years and eight months. That school
is absolutely amazing. I fell in love with that school
as a mother of a child who has autism, and
I decided to take up a job there as well.
And since then I have been working with kids with
special needs, which has really helped me with Afia because
then I could use my personal experience at work as
a mom of a child with autism. So when I
was working with my pupils, I could see how I
can benefit the pupils and the classroom using my personal
experience as a mother of a child with autism. But
when I was home, then I could use my professional
experience and whatever I've learned at work and applied those
strategies at home, so it's really helped me at work
and home both.
That's great, that's the best of both worlds. You get
to help afia at home and you get to help
the kids when you're there. Now I understand that you've
written a book and it tackles the subject that most
people don't want to talk about because it's a little embarrassing,
but it does need to be talked about and addressed.
And it's about autistic people that have problem with party
training or going to the toilet because their brains are
just not telling them what their bodily functions need. So
can you expand on that a little bit?
Okay, So after I was nine years old, when I
decided to toilet train have I had been asking loads
of different authorities, for example, schools, local authorities, pedutricians, and
gps regarding toilet training strategies, and nobody had an answer,
And they all just gave me a generically fledged on
toilet training which was mainly for neurotypical children. And since
I have another daughter who is older than Afya who's neurotypical,
I knew that was just for neuotypical children, and it
wasn't going to work for a child who is autistic
but also severely autistic and completely non verbal.
Okay, so because of that, what was your approach and
how did you handle it?
So then I decided to speak to my colleagues at
work since I was working at Especial School already, and
did some internet research and obviously I've got experience being
a mom of a child who has severe autism as well.
So I put all of that together, my personal and
professional experience together, and I came up with a toilet
training method, and to my surprise and to everyone's surprise,
that worked.
Wow, that's so great to hear that it worked.
So after was fully toilet trained within six weeks of
summer break, which is a massive achievement for a child
like Afia who is on this severe side of spectrum,
completely non verbal. Because the main hurdle autistic people have
when it comes to toilet training is how do they
understan and those internal body signals and how do they
act on it to take themselves to the toilet. And
a lot of people are ashamed to talk about this,
are ashamed to talk about this really important subject that
is toilet training autistic children or adults as well, and
those who have additional needs. Because people don't want to
be saying, oh, my child is nine, ten, fifteen, or
twenty five and they're still enappies. People are advised to
say that they shouldn't be. It's not their fault, it's
not their child's fault. It's just that there hasn't been
a method telling parents and cares exactly what to do
and how to toilet train their children.
That's so great. So now that you've trained Afia, what
was your next step so that you could use what
you'd learned to help other people as well.
So now since I tole it tor Nafia, I had
held a few workshops at this special school that I've
been working at, and again that was very successful. I
had a few parents come back to me and they
said it worked. So I knew that this method has
not just only worked for Afia, it has worked for
other children on the spectrum or those who have additional needs.
And since then, I've been wanting to share this with
the wider community. And the only way to do that
was to write a book.
Oh that's really good. So once you decided that you
needed to write the book, when did that start? And
how did you implement it?
So earlier this year I decided it's now when ever,
I'm going to write a book and share the method
that I used for Afia. And since I've written the book,
I've had a huge response. People have been buying the
book on Amazon.
So what's the title of the book so people can
look for it.
It's called Toilet Training for Autistic and sent children and adults.
It's available at Amazon and people have had, you know,
a lot of success as well by reading the book.
So what I've done in the recent months is I
have linked the book and I've been doing workshops, so
people who have bought the books they can get in
touch with me and I do workshops for them in
person or online as well.
That's really good. So the book's been really successful in
the UK, hasn't expanded outward and around the world.
So the book has not just been you know, very
successful in the UK. It has reached people in USA, Canada, Australia,
remote parts of Africa, remote parts of Middle East. So
I've had moms and parents contact me from Yemen, from
places in Africa. I've had emails, text messages, what's up messages,
mums asking me can you send us a link for
the workshop? How do we by your book? We've heard
about this toilet training method that seems to be very successful,
so I'm just really pleased that people are using this
method and they are achieving the success they and their
children themselves.
Absolutely, this is such a great thing. So how long
did it take for you to put this whole program together?
Well, I was basically developing the method as I went
alone while I was totally training Afia. So in the
answer to your question, isn't going to be that simple
because I had been working, as you know, with kids
with special needs for a long time, and I'm Afaia's mom,
so I had put all of that experience together. So
I would say, you know, it would be like several
years of experience to actually create this method. But this
method was, you know, kind of more developed and adapted
to Afaia's needs and to those who have orders, whilst
I was actually tolet training Afia, because during that process,
I was getting more of an insight of what Afia's
learning is, how a child with autism learns, and how
I can develop it further to make it adaptable for everybody.
So I would say during the six week process of
when I was tolely training Afia. I developed that meself fully.
That's really good. So in the time that it took
you to develop all this, how long did it take
you to write it?
So you do not believe this, but I have written
most of the book over a weekend, because when I
started to write it, I was like, I just have
to keep on writing. I got in the board of writing.
The words kept flowing, and I just kept writing. And
it was a weekend when I was home with Afia
and I was constantly watching her. I was like, I've
got a system in my house where I have cameras
around the house and I watch it on the iPad
if I'm doing something else. So I was on my laptop.
I was attending to ask Ya, but then I was
going back to my lap laptop. So I finished about
roughly eight chapters over a weekend, and then it took
me another couple of weeks just to go over it
and do the introduction and you know, just finish off
the edges and do the end bits. So I would
say two weeks overall it took me to write that book,
but most of it was finished over a weekend because
I had all the information I had everything that I needed.
That's so good because you're helping so many people. So
I understand that once you got it all put together
and then you got it released and wound up on Amazon,
that it did really well there.
I was quite surprised by it, but people took it really,
really well, and my book was number one Hotey Releases
on Amazon for three weeks in a row.
That's really good. I mean, you've just helped so many people,
not only in the UK and not only just Afia,
but you've helped people all around the world. So let's
leave this with one last thought, and let's talk about
Afia a little bit and how your life is with her.
Yes, a lot of people ask me what is life
for Asfia like? Because Afia being very severely autistic, she
has limited interest. She is mostly housebound. She doesn't like
to go out as much. She just likes her sensory play.
And they asked me, you know, what is it like
for Afia and what is it like for me to
live this kind of life? And I don't think people
really understand that how peaceful being around Afia is. Afia
has heard challenges, She has her challenging behaviors, but aside
from that when I look at she's completely non verbal,
but she gains pleasure and she gains happiness from things
that you and I can't even imagine. Like she will
be so happy playing with oads, just a bag of oats,
and she can sit there and play for hours. And
just the way she plays, you know, she will blow
those oats in the air, she will throw them in
the air, she will try and lick them a little bit.
She will have like different ways of playing. How she
does things, and it's not just that. Throughout the day,
how she does things and how she seeks happiness from
the simplest of things just gives me so much peace.
That is just so good to hear. So I have
to say this story of yours has been tremendously good,
and the fact that you've written a book that is
helping so many people is just outstanding. So it's been
a true pleasure to have you on my show today.
Thank you so much. It's been amazing tapping to you.
Oh it's been my pleasure. So now make sure that
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