← Tony Mantor: Why Not Me ?
Tony Mantor: Why Not Me ?
Faria Arsh: How she started the Autism Foundation in the U.K.
00:29:36
Faria Ash to discuss her work since her earlier appearance. After publishing her book on toilet training for autistic and SEND children and adults—based on developing a successful method for her severely autistic, nonverbal daughter, Aia, who is turning 18—Ash founded the Autism Foundation in the UK (officially launched October 2023
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- [00:06]
A
Welcome to why Not Me Embracing Autism and Mental Health Worldwide hosted by Tony Mantour, broadcasting from the heart of Music City, usa, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance and profound understanding of autism and mental health. Tune in, be inspired and join us in transforming the world one story at a time. Hi, I'm Tony Mantour. Welcome to why Not Me Embracing Autism and Mental Health Worldwide. If these conversations resonate with you, I invite you to tap follow. It helps us to reach more people who may need to hear them. Thank you for being here. Joining us today is Fariya Arsh. 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 right after a word from our sponsors. Thanks for joining us today.
- [01:53]
B
No, thanks for having me. Thank you.
- [01:54]
A
Oh, it's my pleasure. Tell us about your journey. Since we last talked.
- [01:58]
B
So since we last talked, that was probably at the beginning of the launch of my book, Toilet Training for Autism and send children and adults. Yes. So I had recently launched my book 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 funds to start a care facility in the uk.
- [02:32]
A
So give us a little insight. What inspired you to create the Autism Foundation?
- [02:37]
B
So the success of my book, which you know, is based on the real life story of my daughter Afia.
- [02:42]
A
Right.
- [02:42]
B
Who will be 18 next month.
- [02:44]
A
Oh, wow.
- [02:45]
B
So she's going to turn 18 years old. Yes, I know. I can't, I can't believe it. Time is flying by. So it's, 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 train an autistic person. Let alone a severely autist 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 am an ADOs 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 sensory impairments because that is very important. It goes hand in hand with autism. A lot of people miss sensory impairments. So I talk in depth about sensory 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.
- [04:40]
A
How long has it been since you launched the Autism Foundation?
- [04:43]
B
I launched it in October 2023. So I had already been doing my workshop since the launch of the book, which was in March 2023, and then I made Autism foundation official in October 2023.
- [04:58]
A
From October 2023 until now, how have you seen it evolve and grow since the early beginnings of the foundation?
- [05:06]
B
It has evolved a lot because now we have a larger community, we have different people approaching us because I get a lot of queries from care homes as well. So there are loads of care homes who are, you know, catering 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 TR on autism and how to support that autistic person. So that's when these organizations and care homes, they approach me and I deliver my training. And I've also started an 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
- [05:52]
A
us an example of what you mean when you say they don't understand the system?
- [05:56]
B
For example, you know, it could be school reports or an EHCP report. We have that in the uk. Here, it's the education and health care 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 on how to build these forms, 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.
- [06:40]
A
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, 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 more people can understand what autism is?
- [07:02]
B
Again, this. But I will always say knowledge is power. We all 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? What's the research behind that? Are we doing enough research to find out? That message that I heard on social media or an Instagram re was 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 guest 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 to on the basis of whatever anybody might say, so it falls 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 Ahiya has autism, they automatically ask me, oh, what's a special interest? What's her 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. Excellent. 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 for 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, the impairments. She's completely nonverbal. 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 Kia's life and every autistic person's life who is non verbal, and especially even those who are verbal, they struggle to communicate. So imagine putting a, you know, tip, a masking tip across your mouth, not being able to communicate. That's an autistic person's life every single day.
- [09:37]
A
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?
- [09:55]
B
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 ADOS 2 assessor training, it was reconfirmed to me that what I'm doing and teach and what I know is accurate because during the assessment of autism, we look at three areas, we look at communication, we look at 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 communicating just fine, but are they understanding what I'm saying? Are they comprehending everything that I am saying? Are they understanding and applying that in real life strategies? Probably not, because they have that communication difficulty. Yes.
- [11:15]
A
One of the main things about this podcast is to help people understand and learn more.
- [11:20]
B
Yes.
- [11:20]
A
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?
- [11:30]
B
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 severe anymore. I don't believe in that. If it is mild, level one, you know, just. Just say it. It's 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 will be verbal most of the times, so they will be communicating. They'll have some speech. 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 the communication is good, I will know that person is autistic with their interaction.
- [12:30]
A
Do a lot of people struggle with that interaction?
- [12:33]
B
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 talk. Oh, how are you, Tony? Long time no see, and so on. We can start a conversation without even thinking. But an autistic person, they may bump into, they go, hi, Faria. And then what's next? Like, they don't know what to say and how to keep that conversation going unless I talk about something of their interest, then they will talk 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 signs. 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 sensory impairments that you will see in an autistic, 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 sensory 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 coming to the severe side of the spectrum, those like afia, they're completely non verbal. You know, some severely autistic people, they may have a few words here and there, 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, and so on.
- [14:59]
A
You just mentioned anxiety.
- [15:01]
B
Yes.
- [15:01]
A
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 they're autistic as well.
- [15:21]
B
Yeah.
- [15:21]
A
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?
- [15:31]
B
Yeah. So the statistics show that more than half of autistic people suffer from anxiety. So those are the stats. Basically, anxiety is really, really high in the autistic population. That is a given. When it's about 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 repetitive 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. Plus 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 occupy 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 even thinking.
- [17:21]
A
Sure.
- [17:21]
B
Am I correct?
- [17:23]
A
Right?
- [17:23]
B
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 set 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 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 they are managing their life better, they're happy, their anxiety is lower. Let them do it. There's no harm in that.
- [18:58]
A
Exactly. Now, coming back to your foundation. When you start a foundation, it is not easy.
- [19:05]
B
No, not at all.
- [19:07]
A
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?
- [19:33]
B
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 gel really well and so on. I work with a lot of schools, I work with, as I said, care, sex sectors. All of those times, they have been easy enough. 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 NHS did not come up with a book. How come this mother has come up with a 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 train 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.
- [20:45]
A
I can understand that. Any other challenges?
- [20:48]
B
Another challenge is now, as I said, I have started a GoFundMe 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 autistic 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 are being abused. So what hope do we have? I am basically trying to create a safe place for these autistic and most vulnerable 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 in 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 rug 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 hot 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, oh, we are on our own, to be honest, at the end of the day.
- [22:26]
A
Yeah, that's true. Whenever you hear a story, lots of times stories will stay with you.
- [22:32]
B
Yeah.
- [22:32]
A
Is there a child or a family that reminds you of why you do this work? Even on the harder days?
- [22:39]
B
Is there a child or a family?
- [22:41]
A
Yeah.
- [22:43]
B
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 and 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 formed a beautiful community for each other and support network each parent. This is what I would say. They're working really hard. They are literally trying their best and I kid you not, I get to hear stories such as, the child has been awake since 4 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 unbelievable. It's so heartwarming. It's lovely. But at the same time it is a sad story that these people are going through so much, but at the same time their resilience is really inspiring.
- [24:06]
A
April is Autism Awareness Month and this episode will be in that month.
- [24:12]
B
Amazing.
- [24:13]
A
What do you feel is true inclusion when we have Autism Awareness Month? 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?
- [24:32]
B
Yes, of course. And I really like that, Tony, what you said. So there needs to be inclusivity as well as, you know, alongside awareness. Because awareness on its own. What are we achieving if we are not actually taking the next step? Isn't it? So we have to take 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 they are wobbling up or ask their parents and families, how can we make this autistic person more inclusive in our communities? 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 mosque or somebody who is a church go goer. 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 mosque 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 lights. Or can you have specific snacks because my child really likes it and 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 of reaching 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.
- [26:10]
A
Now, you've been doing this for a long time. You've been raising your daughter almost 18 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?
- [26:29]
B
As I was saying before this, this comes to my mind again and again that autism is a superpower. That misconception really needs to go. Even, even if the most able autistic person who is thriving, who has a special interest on social media and you know, they're doing really well in their lives. Even if you were to go and ask them, do you think autism is a superpower, they will say 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, yeah, it's not a superpower. I'm sorry, guys. If this offends somebody, I really apologize because that's not my intention. This misconception of autism being a superpower, I think that needs to be stopped.
- [27:12]
A
How do people find you so they
- [27:15]
B
can go on my website, www.autismfoundation.co.uk I'm available on social media, so Facebook. If they type in my name, Faria Ash, they can find me there. If you type in Autism foundation on, on Instagram, you'll find Autism foundation. And I'm also on LinkedIn with my name, Fariya Ach and we also have an Autism foundation page.
- [27:39]
A
What do you see in your future? What is next for your foundation? What do you see on the horizon?
- [27:45]
B
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. I know that I can personally provide them adequate and high quality training so they are well equipped to support an autistic and disabled person. And I know that this change is possible. It's not rocket 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 project 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 surfacing very soon.
- [28:40]
A
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.
- [28:48]
B
Thank you so much for having me. It's been a pleasure speaking with you, Tony. Thank you.
- [28:52]
A
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 who has a story to share, tell them to contact us at WhyNotMe World once. One last thing, spread the word about why not me. Our conversations are inspiring guests that show you are not alone in this world. If you like the show, please take a moment to rate, review and subscribe.
- [29:42]
B
It really does help the show to grow. Thank you for listening.