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

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It helps us to reach more people who may need to hear them. Thank you for being here. Joining us today is Faria 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 very word from our sponsors. Thanks for joining us today. No, thanks for having me. Thank you. Oh, it's my pleasure.

Tell us about your journey since we last talked. So since we last talked, that was probably the beginning of the launch of my book, toilet training for, and send children and adults. Yes. So I had recently launched one book and we talked about back in deck.

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. So give us a little insight. What inspired you to create the autism foundation? So the success of my book, which you know is based on the real-life story of my daughter Afia, who really 18 next month, who wow, so she's going to turn 18 years old, yes, I

know, I can't believe her time is blind, but 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 autistic person who's completely non-wovel 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, or is, you know, I would love to do that, so I started doing those, which went really well. And then to 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 professional schools for a long time, and now I'm an ADoS to train a sector 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 is very important. It goes hand in hand with autism, a lot of people miss sense for impairments. So I talk in depth about sense for 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 2023. So I had already been doing my workshop since the launch of the book, which was in March 23, and then I made autism foundation official in October 2023.

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 queries from care homes as well. One of the 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 training 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 queries and their own were being led 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 EHCP report, we have that in the UK here. It's the educational and healthcare plan, filling all of those questionnaires during all of that is a lot of extra work to start up 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 they respond, 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 when 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.

“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?

Again, this part I will always say, knowledge is power.

We only equip ourselves with right knowledge as well at the same time because it'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 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 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 on the basis of whatever anybody might say. So it falls to us, but I try my best to social media all 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, ah, yeah, has autism.

“They're automatically asked me, oh, what's a special increase?”

What's your superpower? She must be so good at something specific because I know autistic people, the excellent one area. Well, yes, they do, but only a few autistic people, excellent one area. 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 excellent, which is amazing.

And I'm so pleased for them. But important rest of the autistic people who are struggling every single day, you 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

there is clips of autistic people excelling in one area. So when people ask me, it really upsets me because, you know, we're undermining the difficulties Achya is going through every single day. It's really hard for her. You know, in spring payments, she's completely non-worldly.

I mean, imagine if somebody were to put a tape on my mouth and I'm not able to explain myself to ask for things I want, how frustrating that wouldn't be. So that's his life and every autistic person's life who's non-worldly, and especially even those who are well-built, they struggle to communicate. So imagine putting a, you know, tape, a masking tape across your mouth, what being able

to communicate, that's an autistic person's life every single day. Yeah, exactly. If you were 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?

They 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, um, suffowate specific

And they will be finding other areas of sensory issues or sense-wain 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 adults to assess a craning, 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, we look virtual interaction, and we look at repetitive behavior. So, everybody on the spectrum, whether they are 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 really getting just fine.

But are they understanding what I'm saying? Are they contemplating everything that I am saying, are they understanding, and applying that in real life strategies probably, but because they have that communication with our team. Yes.

One of the main things about this podcast is to help people understand and learn more. Yes. 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 my autism.

Some people get offended when I say "myel," because apparently we're not supposed to use the word "my" more written to say "be any more." I don't believe in that if it is mild, level one, you know, 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 well-known most

of the times. So, they will be communicating, they'll have some space, 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 of view and so on.

“They may 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. 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

start small talk. Oh, how are you, Tony Long time no see and so on? We can start a conversation without even thinking, but to not be a sick person, they may bump into the go, "Hi, Faria!" And then what's next?

Like, they don't know what you 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 rapidity of 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 are aware that, "Okay, I'm not exactly the same as everybody else. My communication is a bit different, my interaction is a bit different."

And so, they become really aware that they are different, although they might be putting up a mask and blending in to the world, but they're entirely aware of that fact. So, that creates a lot of anxiety within them. So, again, we need to look at 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 at for communication

and social interaction is the main one that you 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 sensitive 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 interaction will be harder and they may have more sense-wain payments because they may really struggle in a suit of market 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, afriar, they're completely on level. 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 really get more and more and so on.

You just mentioned anxiety. Yes. I recently expanded my podcast to include mental health.

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.

Number one diagnosis 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 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 rapidity behavior, which I talked about a few times.

Now a lot of people think the rapidity 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 that anxiety better. And we all are creatures of habit, they'll occupy us all human beings.

“If I were to ask you, Tony, how do you get out to 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 a 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 said 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 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. 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 that there's 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, I mean, a hindrance in their

lives and everybody else's life, then of course, change that. Like, 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. It 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, does 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 effort. My easiest times are parents because I understand whether coming from they know I'm a parent of a severe autistic child and we're generally well and so on. I work with a lot of schools, I work with, as I said, care sectors.

All of those times, they have been easy enough for the toughest journey so far has been dealing with authorities because authorities are so rigid in their own way of not wanting

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 I thought he's a 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 praying at the 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 the book on my 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 the 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 best in the news on 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 field 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 live pretty 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 wonderful people

in our society, but sadly, not many people are even supporting on this. Everybody turns the 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 being to watch it anymore. Change the channel, brush it and they're bad 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, it does matter how hard it is. So despite the fact that it is such an important cause, it's such noble cause, raising money has been really difficult.

Exciting away because it just shows how much the world cares about vulnerable people. Sadly, you know, we are on our own to your nest at the end of the day. Yeah, that's true. Whenever you hear a story, lots of times 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.

Uh, you know what, I have come across so many amazing parents.

And I know that you've been through them. I don't directly get to work with the children because a 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 kind of us. And my kid you know, 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 mum 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 heartwarming, it's lovely, but at the same time, it is a sad story that 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 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? Yes, of course.

And I really like that turning what you've said. So it needs to be in use of it 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 itself isn't really making it 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 community?

That is the best way because let's say, you know, I'm a Muslim woman.

be able to go to the church because they are caring for the autistic person or autistic daughter on a Sunday. If the church almost 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 noses or can you, you know, give them the light a little bit because my child is quite sensitive to the light. Or can you have specific snacks because my child really likes it and they'll be happy or 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 very minimum we can do to make this autistic person and you feel more into it and managing. 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? I thought I was saying before, this comes to my mind again and again, the autism is a superpower, the misconception really needs to go, even if you'd be the most able autistic person who is thriving, who has a special interest on social media and you know, they're

doing very well in their lives, even if you were to go and ask them, do you think autism

is a superpower? They were so 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 a friend, somebody

“I really apologize, because that's what my intention is misconception of what some being”

a superpower I think that needs some stuff. How do people find you? So they can go on my website www.autismfoundation.co.uk, I'm available on social media so Facebook if they type in my name barrier urge, they can find me there, if you type in autism foundation

on Instagram, you'll find autism foundation and I'm also on LinkedIn with my name barrier

urge 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 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, 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 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 to serve the same 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 your tourney, 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 who has a story to share, tell them to contact us at why not me.world.

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