Tony Mantor: Why Not Me ? - Faria Arsh's Inspiring Journey of Hope and Resilience inside the Autistic World

Episode Date: August 16, 2023

Send us a text Imagine walking in Faria Arsh's shoes for a moment. A devoted mother to a non-verbal, severely autistic daughter, Faria has not only navigated through the labyrinth of special needs parenting but also found innovative methods to simplify their life. In our engaging conversation, Faria opens her heart about her journey with her daughter, Afia, from finding a specialized school, embracing technology for communication to preparing for the changes that puberty brings to a child with autism. The second part of our heart-to-heart with Faria takes you through Afia's life transitions. The shift from picture cards to an iPad to assist in communication, the importance of establishing a strong support network, and meticulously planning even the simplest of daily tasks. But the highlight of our conversation is Faria's ingenious toilet training method, a game-changer for many parents in the special needs community. It’s a blend of her personal and professional experiences that formed the foundation of her successful approach, now encapsulated in her book 'Toilet Training for Autistic and Send Children and Adults.' Navigating through life with Afia, Faria has discovered joy in simple things. Despite the challenges of parenting an autistic child, they find happiness in their unique ways. It's a journey that can inspire, educate and offer a fresh perspective on living with autism. So, tune in as we unravel the resilience, dedication, and hope that propels Faria in this journey of love and acceptance. 1 https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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 20 years ago, has an autistic 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 autistic daughter. Could you tell us a little bit about her? So my daughter, who's 15 years old, she's called Afia. I started to realize that there's something missing because I've got another daughter, Pfizer, who's 18 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 Afi wasn't interested in any interaction. Whatever babbling she was doing at the age of eight months that had stopped by, she was 12 months old. So I was getting

concerned that there is something missing here. So at that point, what are, options were you thinking of? So I decided to take her to the GP when she was 14 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 pediatrician. By the time we saw the pediatrician, she was already 18 months old. And by that time, it was very obvious that Afia has some form of disability. The pediatrician didn't want to confirm autism, but that was still on the cards. And by the time Afi was two, it was very obvious that she has autism because she had no speech. She had no social interaction scales 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 autism. 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 Afia to a private play group just for a couple of hours, twice a week. And as soon as I started sending her there, this was just after she turned two. 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're all in the playground, Afi 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? The area we live in, we are very lucky that there is a very good special school nearby.

So I managed to get Afia into that special school by the time she was two years and eight months. She still hadn't got her diagnosis by this time because in England, things work in a different way. People patients don't like to give out diagnosis before the age of three. at least that was the case at that time when Afi was getting diagnosed. So even without the diagnosis, because of a profound autism, we were able to get Afia 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.

They were 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 15 years old. Has she developed any social skills and is she blending in better now that she's in school is helping her?

How is she developing that way? So I would say no. Aphia 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. It doesn't matter what terms you use.

Afia 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 say never, 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 as far as interaction with other people? Do you still have that hope? She has very, very few social interactions with anybody really, and they're 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 Afya 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 15 has there be 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 calm. 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 Arpia started her special school, there was a system called Picture Exchange Communication System. It's called PECS. 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, to an adult and give it to the adult so that I can then give whatever Afya wants. So, for example, Afya 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 Afya 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 PEC's book for a very long time and she's a very good PX 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'll 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 her 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 Pfizer and Afia when they were younger.

Because Afia was a lot more smaller in size and we were able to maybe put her in pram and do things with both the same. 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 Pfizer was a caring sister towards Afia. But as Afia is getting older, now Afia does not want that interaction. And then Pfizer is also getting older. She is an 18 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 both are teenagers. They want to be in their own rooms. And that's typically what you would see in any household with teenage kids, 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 autistic. 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 20 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's mom and Apia's primary carer.

So I'm not just her mom. I'm a primary carer. That's so true. I often say this. Nobody is the expert on child other than the primary carer because the primary carer knows exactly what the child needs. Because I'm looking after Afia 24-7. 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 Afa 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 has just been 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 core needs of a child who has autism. That's so understandable. This is why what you just said is 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. 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 Aphia is nonverbal. Does she have anything that she likes to do, like going shopping with you, going to the grocery store, or anything that gets her out of the house and exposes her to the world that might be able to be good for her.

So Afya 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 10, 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 meal together. So we had to plan everything very, very meticulously. Okay. So you're planning that, and that puts her about 10 years old. So at 10, did you start seeing changes between her age of 10 and to now of being 15? 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 are a boy or a girl, those changes are happening within their bodies. We can't physically see those changes happening, but those changes are happening and that is going to have a massive impact on their emotional well-being.

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 a behavior, a very challenging and difficult behavior. For 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 that we just definitely need to talk about. So once she started going through these changes and she hit 15, 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 in why she's there and she wasn't able to cope with the noise and everything else around her. So then I had to 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 meldum 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 after your first time. 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 and which has really helped me

with Afia because then I could use my personal experience at work as a mum 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 apply 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 a 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 potty 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 Afia was nine years old when I decided to toilet train her. I had been asking loads of different authorities, for example, schools, local authorities, pediatricians and GPs regarding twilight training strategies, and nobody had an answer. And they all just gave me a generically fled on twilight training, which was mainly for neurotypical children. And since I have another daughter who is older than us,

who's neurotypical, I knew that it was just for neurotypical children and it wasn't going to work for a child who is autistic, but also civially 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 a special 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 person 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 it was fully toilet train within six weeks of summer break, which is a massive achievement for a child like Africa, who is on the severe side of spectrum completely non-verbal. because the main hurdle autistic people have when it comes to toilet training is how do they understand 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. I'm 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 9, 10, 15 or 25, and they're still in Nuffles. People are embarrassed 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 carers 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 told her in Afia, I had held a few workshops at the 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 a 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 and ever I'm going to write a book and share the message that I used for Afya. 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 Toiletraining for Autistic and Send, Children and Adults.

It's available on Amazon and people have had 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. Has it expanded outward and around the world? So the book has not just been, you know, very successful in 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, WhatsApp messages, moms asking me, can you send us a link for the workshop? How do we buy 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 deserve. 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 along whilst I was totally training Afia. So 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 Afia'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 Afia's needs and to those who have autism whilst I was actually totally 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 totally training after, I developed that myself 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 will 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 mode of writing, the words kept flowing, and I just kept writing. And it was a weekend when I was home with Athia, 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 her on the iPad if I'm doing something else. So I was on my laptop. I was attending to Athia, 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 up the edges and do the end page. 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 it 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, hot new releasee it 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 Apia, but you've held. 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 Asia 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 a sensory play. And they ask 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 her challenges, she has her challenging behaviors. But aside from that, when I look at Afia, 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 odes, just a bag of odes. 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'll 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's 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 chatting to you. Oh, it's been my pleasure. So now make sure that you support this and most importantly, purchase the book. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to tonymentor.com,

contact, then they can give us their information so one day they may be a guest on our show one more thing we ask tell everyone everywhere about why not me the world the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world