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All Things Autism – Sara Gullihur

Episode Summary

Join Anna Kennedy and special guest Sarah Bradford from the US in this inspiring conversation about multi-generational autism diagnosis and advocacy. Sarah shares her remarkable family journey that began in 2011 with her son’s diagnosis at 16 months old, followed by her husband’s diagnosis six years later, her 10-year-old daughter’s diagnosis, and finally her own autism diagnosis at age 46. The episode explores Sarah’s work as a children’s book author under the pen name S.J. Charles, creating inclusive stories about autism, dyslexia, and other differences to help children understand themselves and support their neurodiverse peers.

Anna also provides exciting updates about upcoming Autism’s Got Talent events in October and November, shares valuable book recommendations including “From a Tier to Here” by Dawn Avery and “A Parent’s Guide to Autism Diagnosis,” and emphasizes the crucial importance of self-care for autism parents and carers. Sarah’s son’s incredible abilities are highlighted, including his photographic memory and knowledge of 133 languages, while both hosts discuss practical communication strategies and the power of never giving up on verbal development, even when progress takes years to manifest.

Join Anna Kennedy and special guest Sarah Bradford from the US in this inspiring conversation about multi-generational autism diagnosis and advocacy. Sarah shares her remarkable family journey that began in 2011 with her son’s diagnosis at 16 months old, followed by her husband’s diagnosis six years later, her 10-year-old daughter’s diagnosis, and finally her own autism diagnosis at age 46. The episode explores Sarah’s work as a children’s book author under the pen name S.J. Charles, creating inclusive stories about autism, dyslexia, and other differences to help children understand themselves and support their neurodiverse peers.

Anna also provides exciting updates about upcoming Autism’s Got Talent events in October and November, shares valuable book recommendations including “From a Tier to Here” by Dawn Avery and “A Parent’s Guide to Autism Diagnosis,” and emphasizes the crucial importance of self-care for autism parents and carers. Sarah’s son’s incredible abilities are highlighted, including his photographic memory and knowledge of 133 languages, while both hosts discuss practical communication strategies and the power of never giving up on verbal development, even when progress takes years to manifest.

Main Topics

  • Multi-generational autism diagnosis within families
  • Late autism diagnosis in adults and women
  • Children's book writing for autism awareness and inclusion
  • Communication development and verbal skills in autistic children
  • Self-care and wellbeing for autism parents and carers
  • Autism's Got Talent events and community advocacy
  • Educational resources and autism support books

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Podcast Transcript

Hello, this is Anna Kennedy and we’re talking all things autism and another hot day here in London. We are praying for some rain. We need rain.

Everywhere is so brown and parched. So I do love the sun though. I must admit I am a bit of a sun worshipper.

So another busy few days and another busy few weeks ahead. And you know what? I’m actually going away for the first time on my own with nothing to do with autism related. It’s just a break.

It’s been about 10 years since I’ve been on my own somewhere. So I’m going to see an Ives, which is beautiful. And I’m going to see Phil, who’s one of our main compairs at the charity.

But also I met him via the People Strictly, which was Strictly from Dancing. So Phil Barna, he has a wonderful theatre called Kids Are Us, which is in the beautiful St Ives. So I’m going there for two days and I’m going to watch one of their productions called Calendar Girls.

I can’t wait. So it’s actually something that’s not autism related because every time I go somewhere, it’s always to do with a link to do with autism or it’s an event. But this time it’s just something for me.

So it’s two nights. I’m really looking forward to it. But you know what? I’m feeling a bit guilty and I don’t know why.

But I do because I’m saying to my husband, you know, I’ve got to do this with Angelo and this and that and the other. And he said, don’t worry, it’ll be fine. So yeah, I am really looking forward to it and I’m excited.

So, again, we’re still pushing forward for Autism’s Got Talent, which is happening in October. Not long to go. Really, really excited as are all the performers.

The tickets are on sale. So if you’re interested, all the information is on the charity website. So that’s www.annaKennedyonline.com. Also going to Stockton, which is my neck of the woods in the northeast.

I am patron to Daisy Chain, which is a wonderful charity. And we’re going to be doing Autism’s Got Talent Roadshow there, which is in November. So again, all the information on the charity website.

Just to remind you, I was talking about, you know, going away. It’s been 10 years since I’ve been away a while. The importance of taking five minutes out as a parent or a carer of children or adults who are autistic.

You need to have time for yourself. Because, you know, you can burn out because you’re rushing here, rushing there to appointments or not sleeping or juggling so many balls in the air. You need to take five.

And I know it’s hard. I’m not saying it’s easy. Even if you just have a bath with a door shut, you know, the few candles, scented candles, or just go for a walk on your own.

Go for a coffee meetup with a friend. So if you can do that, please, please do. We have our well-being ambassador, Juliana Weeter.

Just to remind you, lots of tips and advice on her YouTube channel. Again, that’s all on the charity website. Juliana’s been our well-being ambassador now for about three years.

Such a wonderful lady. I’ve got a few events coming up. I’m going to Watford Football Club, which has supported our charity.

We’re going to have a fun day for families. So that’s exciting. We’ll be having a tour around the football stadium, visiting the sensory room, having their photograph taken with the mascot, and then some lovely food.

Last time we did it, all the food was so delicious. I’m also a patron to Kilmarnock Horse Rescue. So it’s a wonderful place in Crawley, where I am patron to the office of support Crawley.

So we’ve got 20 families that will be coming along. We’re going to be having a picnic. We’re going to be having a little bit of fun so all the siblings can join in and everyone’s going to have a wonderful time.

And thank you to Tesco’s as well. They’ve donated £200 so we can buy food and drink and have a wonderful time. And the last thing I’m going to be doing is going to Camp Mohawk somewhere else.

I’ve just been a maid ambassador for such a wonderful place. It’s been going for some time. So it’s going to be a whole day where families are going to be coming to visit the centre of such lovely equipment and outdoor, really a relaxing environment.

So that’s something I’m looking forward to. So that’s lots of things going on. So just a couple of books I just wanted to share with you.

So from a tier to here, an autism’s family journey by Dawn Avery, which is one of my charity champions. So this book was written originally as a form of therapy. I was struggling as Aston was growing.

I found myself being lost in my poetry. I decided to note down my feelings and thus the book evolved. Our family had a journey many now experience.

Back then, autism was not so understood. I often felt alone and confused at the differences we had faced. I decided to piece the book together.

I hope it would give understanding. I wanted to give an insight into the lifestyle of a family living on the autism pathway. If you’re interested in purchasing the book, you can get it from the charity website and our shop.

It’s called From a Tier to Here. And on the front is the lovely Aston who’s one of my ambassadors and also a radio presenter on Gateway where we do all things autism in Essex. Just to remind you again about the autism passport, all about me.

You can either download it from Autism Anglia’s website or you can purchase the booklet at £1.50. It’s been used by many, many schools, colleges, parents, carers. So it’s a little booklet and it’s all about me. How can you help me? Things that affect my ability to communicate, characteristics of my autism, stress-reducing methods that may help me.

So this little booklet was sponsored by our charity and it was produced by Autism Anglia. And the last book I’m going to share is A Parent’s Guide to Autism Diagnosis by Dr. Sophia Moonsey and Adele Devine. What to Expect and How to Support Your Child.

You can get it from Jessica Kingsley Publishers. So Dr. Sophia Moonsey is a high-experienced consultant pediatrician who has worked for the NHS and in the private sector for over 30 years. She’s also a medical advisor on several committees.

She has four children and enjoys cooking, tennis, travel and long walks. And Adele Devine is a highly experienced special needs teacher at a school for young people with severe learning difficulties. And autism, Adele was one of our finalists at the Autism Bureau Awards.

Again, it’s called A Parent’s Guide to Autism Diagnosis and it’s on the Jessica Kingsley publisher website. So my guest today is all the way from the US, the lovely Sarah Bradford. She’s an independently published children’s book author under the pen name S.J. Charles.

Subjects such as autism, dyslexia, physical differences, anxiety and more, helping children understand themselves as well as support their peers and neurodiverse needs. Encouraging love and inclusion in every situation. Sarah is the CEO of S.J. Charles LC, a company made about to bring support to families.

Welcome, Sarah. Finally, we speak. Good morning, afternoon where you’re at.

It’s so nice to finally meet you. Oh, lovely. Thank you.

So all the way from you to chatting to me. So before we talk about autism, before we talk about all the wonderful work that you’ve been doing, who is Sarah? Tell me a little bit about yourself. Yes, thank you.

Well, I am married 18 years with my husband and we have three children and several dogs, as I was telling you. You’ve got eight puppies. Eight puppies right now, yes.

And so keeping us very busy. I love to be creative. I love to do graphic design just for fun.

I love to write poetry and books, as you know from the books. And yeah, I just really love to make connections with people, which is where I find myself in this perfect position. Oh, wow.

Thank you. So let’s talk about how your autism journey began. I believe it was in 2011, is that right? Yeah.

And it’s funny we say that because that is when my consciousness of it began in 2011 with my son, who was diagnosed at 16 months old. And he was reading at one and writing at two, but he was non-verbal until almost four. And so we wrote back and forth to communicate with one another.

And then he was officially diagnosed in kindergarten with autism. It was previously PDD NOS. And so then we started our journey.

I started advocating at his schools through my community, the kids in my community. And then my husband received his diagnosis about six years later. And so we started fitting the pieces of our family together a little bit more.

And I really started to see the accommodations that I made for him and started to kind of see the overlap and think, well, I can give these same kind of accommodations to my children, also to my child. And then it was about maybe last May, last year, that my 10-year-old was also diagnosed. And then this May, which I don’t even know if you have this information or not, but I also received my understandings that I am also on the spectrum.

Wow. So how did you think about that? Oh, gosh. You know, it’s fitting into place, or we were overwhelmed.

Yeah. I was so excited, actually. We said, well, do we have an autism party? Do we make a cake and celebrate as a family? Because it really gave me the perspective from a mom, from a wife, and now from an individual perspective to look back and say, these are all the things that, like you said, it was consciously I was learning about autism in 2011 or 2013, but it wasn’t until I was 46 years old that I recognized that it was in me all along.

Have you ever heard of autism before? Your son was diagnosed? Probably just briefly, but nothing that I really knew about. I did have a sister-in-law down syndrome, and so I was very familiar with taking care of her, and she lived with us. She had dementia, and she was in her later years of life, and I cared for her during that time.

So wonderful experience to be able to just have that knowledge. I call it senior citizen karma. Some day when I’m old, someone will take great care of me, right? Do you worry about now, because of your son’s been diagnosed and your husband and yourself? Because that’s something that I think about when I’m getting older.

Who’s going to care for me? Yeah, right? It’s not the truth. For our kids, we’re really just strategizing ways that we can put things in place, and you just never know. It’s so hard to know what to put in place.

So can I just ask then? Because you were diagnosed yourself at 46. I was 45, I just turned 46, so just barely. So what was school like then? Did you struggle? Were you fine? What was it like? Can you remember? Yeah, I was actually a really great student, very far ahead, and so that’s something.

Growing up, I was just in the advanced classes and things like that, but never anything that was, I guess, noticeably too advanced. But yeah, I think that the social part is where I really had a hard time. I remember a lot of times my mom saying, why can’t you just be friends with the girls? Why can’t you just be in the girls’ groups like the other girls? And it always seems like I was just kind of on the outside looking in to these relationships and groups of people.

So what sort of things were you interested in when you were a child? Sports, I was very, very athletic. So that always keeps your mind on something then and there, and it has results. So that’s an easy thing to do.

Writing, I always love to write. I think I’ve been writing poetry since I could write. And yeah, I think those animals caring for people.

Okay, so DJ Story then. So he apparently has a photographic and auditory memory. Can you talk a little bit about that? Yeah, we recognized that.

Like I said, he had started reading at one year old. And so when I taken him into that appointment that found out he had autism, I was shocked because in my mind I was like, well, he’s super advanced. I don’t understand.

But now I know, of course, what that means. Yeah, he started showing us by coming home and writing everything he’d seen, like license plate numbers or addresses, and he would just come home and write things down. And he was three years old, and he wrote Montana in cursive and block letters.

And I realized my mom had worn that shirt just a few days prior and thought, oh my gosh, he recreated this shirt. And so I just started finding all of the, I love early academics and early childhood education. So I dove deep and found all of the best products and kind of services for him at such a young age so that he could start on his academic journey.

And I just started finding DVDs at the time because it was 2011 and really had just so much success in helping him learn how to self-learn. So yeah, I got him on the right path to what to learn. I think that was the most important part.

And how old is he now? He’s 12. He is 12, and he studies 133 languages. Wow.

Say that again. Yes, 133 languages. Basically, he stays on top of Google Translate, and as they ever add a language, he makes sure he’s on top of it.

So he’s constantly in there updating himself. And you know as well as I that even someone who is verbal with autism may not communicate as well as everyone. And so I love to tell people that he knows all of these languages, but he couldn’t actually have a conversation with you in any of those, even English.

So it’s just his auditory and his identification knowledge. If he sees Hebrew, he can say, oh, this is in Hebrew, and he can say what it says. But he’s not fluent in speaking other languages.

I see. So is his communication skills of view with his day-to-day needs, is that improved now? Oh, so, so much. I mean, we’re just always so surprised and so proud of how far he’s come.

There were times when he would just pull us by our hand to take him to things constantly. And now he is, can I have some chips? Can you open my cup? Can I go to the car? You know, it’s really great about his questions and finding his needs met. So we have, I have quite a few parents that contact me because they say, oh, my son’s, oh, my daughter’s not talking.

It’s like they’re five or they’re six. Is there any tips and advice that you could give? Because I always say never give up because, you know, my son Angelo has minimal verbal skills. I know he’s 29, but he just didn’t say anything at all.

And now it’s like, can I have a kink and that sort of thing. But that conversation with Angelo. But then he loves, as you say, words of typing.

He’s always on the computer. He’s always watching YouTube or whatever it is. The verbal skills are not there.

So have you got any tips and advice because our listeners always love tips and advice or anything that you could share that, you know, we’re not saying it would work, but if you don’t try, you’ll never know. Absolutely. You know, for our son personally, this is a very individual, you know, kind of study is that we looked into his diet.

The diet changes made overwhelming progress for him. Like we saw huge differences when we looked at his diet and changed some things there. We also, you know, we did a lot of picture exchange communication when he was younger and we did the writing back and forth.

You know, what was really, really great for us was music. Music really connected words and learning for him and helped him to express himself in so many ways. I found some DVDs called Rock and Learn, Rock and Learn.

And they would sing math problems or sing, you know, where you put the commas and things like that. And so it made a really big difference for him. And I think like you said, just never stop, never stop trying.

And I think when we give our child the chance to make a connection with us rather than trying to force that connection with our child, you know, and that can look as simple as finding an interest that they have, such like you said, the computer or maybe like Minecraft. Let them show you how to do something. When you give them kind of the power to teach, then they take that and they can build more skills with that.

So if you don’t mind, I’d like to talk about your husband’s diagnosis. And the only reason is because I don’t get to speak to many people where their husband has been diagnosed on the spectrum. My own husband has Asperger’s and he was diagnosed in 2013.

So I have that experience. So talk to me about before you knew and before your own diagnosis, what difficulties in your relationship did you have if there was any? Yeah, I would say communication right off the bat. He was well, let me go back to his life, his growing up first off.

He was he had kind of a rough childhood. He spent many of his days in detention. And unfortunately, his, you know, diagnosis wasn’t known.

And so in his behavior and in his communication, he was mostly in trouble and getting punished for it. So he did go through a lot of therapy and I think what happened was it gave him the ability to really look at things analytically and be able to kind of separate himself emotionally from things and be able to work things out in the future as a grown man. But when we first started dating, he definitely helped me kind of reign in my emotions.

That was something he was fabulous at doing, helping me. Right, me? I think that, you know, I did not have the proper communication styles growing up. My family communicated in loud ways that weren’t maybe necessary or appropriate for all types of families.

And so when, you know, when we decided to start dating and, you know, wanting to build a family, that was something we really wanted to do correctly, was communication between our family members. So that was really nice. Some of the things I would say that I noticed that maybe were different than other people I had dated in the past was that he wouldn’t go to restaurants.

He could not stand to have people eat around him. And now, as we know, now I can understand that 100 percent. But at the time, oh, I would just be so bummed out sometimes because I just never went to restaurants and we always do the fast food or I’d have to pick it up and come home.

But, you know, that’s not the most important thing in life. And I learned to be happy not to have to do that. What about holidays? Do you like holidays? I think if it’s something that is loosely planned out, I think that strict plans make him very uncomfortable because there’s any types of change that can happen.

And then, you know, that doesn’t bide well for any of us. But, yeah, I think that when we did, we took a lot of car vacations, which I think is where we’re more in control of things. Yeah, that sounds good.

Yeah, because my husband hates holidays. We’ve tried it a few times and it’s just too stressful. Yeah.

So we haven’t been for a long time. Although this first time this year, he actually said, why don’t you and I go to Italy? And I nearly fell on the floor and thought, oh, I got that. What’s brought this on? But, yeah, he’s just never been very, very keen.

So are there any tips and advice you would give for somebody that might be dating someone with Asperger’s syndrome or what sort of things do you think that would help the relationship? You know, and I think just in any relationship, open, honest communication is key. Key, key, key. That is number one.

And then in that, you can really understand how to support one another. It’s all about compromise. And, you know, even though there were times where I wanted to go to a family party and he dreaded anything of that sort, we still learned how to compromise.

And our communication, I think, is just, is key. We were very good friends when we met, and when we started dating, we had already built this foundational friendship, which has lasted almost two decades. So I’m so happy to say that, you know.

He’s my best friend, and every time we’re together, we just have a great time. We’re married, so, of course, we have marital disagreements or whatnot. I don’t think any relationship can go without that.

But the one thing is that we respect each other so much, and we just really want to provide each other the best level of care and comfort we can. Okay, so you’ve got the SGA Child’s Books for Children series. So what’s that all about? Yeah, so, like I said, kind of back in the beginning, teaching my community how to communicate better with my children was really important for me.

And so it started off as just a hobby. I was just going to go have the book made at our local Photoshop up the street. And I had read the book to a couple of teachers, and they just said, this is amazing.

This is great. You need to keep going, write some more books. And so I wrote the seven out.

Actually, one of them is illustrated by my daughter. When she was eight, she illustrated her own book, her ABC book. Her name is Anna as well.

Lovely, lovely name. And so, yeah, it’s just been such an incredible journey to be able to share the stories of autism. Both of my children have a physical difference.

That’s what the physical differences book is about. And so that was important for me to also share that because they have a difference in their physical bodies, it doesn’t mean that they can’t be your friend or they can’t play this game with you and things like that. It doesn’t affect them in any way like that.

But what’s great was I donated the books to the classrooms and then to see the success that it had in the classrooms and just to know that that group of kids that had been exposed to the books and had loved them would then take all of that knowledge and experience to the next grades with them to be able to support their peers that may have dyslexia and to understand that it’s okay and it also helps to identify problems that kids may be having and help ask for help because that’s really what it comes down to is that some of these, some children don’t even understand what dyslexia means or looks like or autism or Down syndrome. You know, you can see somebody with Down syndrome but you don’t necessarily understand why. And so a quote that we have at SJ Childs is a little bit of knowledge turns fear into understanding.

Okay, that sounds good. So you’ve got your own podcasts and you have the SJ Childs show bringing families through education and resources. So when did you start doing your podcast? And can you remember your first podcast? Yeah, definitely.

About a year February, a year ago in February is when I started and I think I’m up to 130 episodes. I kind of overachieved at the very beginning. So yeah, my very first episode was with a cyberbullying expert, actually.

Yes, very, very fascinating woman, Dr. Willard. And she is, as I said, is about cyberbullying and anti-bullying campaigns for kids. So amazing work that she does in the communities.

So you’ve interviewed one of my friends, Dean, I believe. Yes, oh, Dean was so wonderful. What a pleasant person.

I had the opportunity to interview Dean through a mutual friend. Her name is Faith. And I’m not sure how much you know about Faith.

She is an 18. I think she may be 19 now, that she has cerebral palsy, epilepsy, and is partially blind. But she does the fashion runway.

She does speaking. She does podcasts. I mean, this girl has the most life in her.

Nothing stops her. None of these physical things stop her from moving forward and having her dreams and her successes met. Can I just ask, what’s the provision like for autism and where you live? So for children, for adults, like schools, colleges? Yeah.

I think it’s getting better. It’s much better than 10 years ago when I was looking for resources, personally, for my son. I’ve seen the community grow just tenfold.

There’s so many more classes and schools available. But at the same time, we still need our community police, our community hospitals, our community other types of places that I’m trying to go in and help train and help them get a better grasp of how they can support autism in the community. So I think it’s kind of like a symbiotic relationship.

You know, they have to give understanding, and I can give them some education. So I’m quite passionate about autism diagnosis. It horrifies me when I speak to some families that always have five years to get a diagnosis.

What’s diagnosis like where you live or… Yeah. You know, it’s probably the same, it sounds like, unfortunately. It’s very… Miss… I don’t even know what the word I’m looking for.

Yeah, it needs help. They definitely need to have some better systems in place, especially as you probably understand for females. You know, the capacity for females to be able to mask at such an early age just goes unnoticed for so long for some.

And the fact that there are… Now what I can see are maybe overactive strengths in the beginning, whereas the boys tend to have the underactive, you know, weaknesses. And so I think it’s interesting that when we can look at that and hopefully, you know, when we have more research and more information, that scope of perception can be widened and we can get a really better diagnosis process out there. So with you being diagnosed, how did you approach it with telling your extended family, like your parents? Because I spoke to some where they said, oh, it was welcomed, others are saying, oh, what did you do that for? It was like a bit of a mixed response.

How was it for you? If you don’t mind sharing? Oh, no, I love to. Absolutely. I think it’s about the same.

I think that there were friends who I, you know, since they know I’ve been on this autism journey and I’m such an advocate and so passionate, I figured that they would just be like, of course, of course. And then, you know, they would say, no, that couldn’t be. That couldn’t be.

Oh, but I only told my mom. I haven’t told my dad yet. He is a general in the military.

And so his mindset is a little bit stiffer and a little bit harder to penetrate those ideas of things. And, you know, we live far apart. So it’s not like it affects our relationship anyway.

But yeah, with my mom, I mean, as soon as I told her I had a brain scan, I had brain mapping done. And so for mine, it wasn’t even like arguable. This is what my brain says I have.

You can’t argue it. It’s right here on a map, right? And so, yeah, so I think it made it a little bit easier for my mom to accept because she is a nurse. So because it was more of a medical, rather than a psychological type of diagnosis, I think she was more on board.

And what about, have you got any siblings? I don’t, and I’m an only child. Yeah, so, yeah. Okay, so with reference to parents and you talk about timeframes, what do you actually mean? So tell me a little bit more about the timeframes that you’re talking about with reference to parents and accommodating parenting.

Yeah, you know, I think that it’s really important with parents as early as they even suspect. I am under kind of the impression that if you suspect something, it’s probably for a reason. People don’t just generally suspect autism when it’s not at all prevalent.

So I think that that right there is a key idea. But also, you know, getting your parent mindset aligned to be what your child needs rather than what your child can change to be more like you or to be more in society. We need to really recognize how we can support our kids and meet them where they’re at rather than try to put them where society is at.

Okay, so what’s your opinion on schools? So what do you think about mainstream schools? What do you think about special educational needs schools? And what do you think about homeschooling? So do you think there’s a place for all three? Or are you like very much… Oh no, mainstream is the only way to go. Or special needs is the only way to go. Or tuition is the only way to go.

What’s your opinion? Yeah, I think that all three are important to look at. I think any kind of resources we have available is support systems that we could take advantage of and not take for granted, but take advantage of. And so I think, you know, as far as like public school or mainstream school, that worked for us until it didn’t.

And when our son was doing algebra at five-year-old, the school said to me, sorry, we cannot teach him on this level. We don’t have availability for him like this. Sorry, we can’t take him.

So I had to bring him home and do homeschooling. Watch his mouth. Yeah, which is crazy because you’d consider or figure that these teachers have a college education and they shouldn’t teach him.

Or even like we can help him with this, but we haven’t got the resources for this, but we could probably buy in to help him. You know, we probably could get… Isn’t it about being flexible? Yes, absolutely. I mean, and I truly was so disappointed in our school system to think that they would put not only my childhood into disservice, but what about all the other children after him that might come with this same advanced education style? It would have been better to create a program then for all of those children to be able to fall into afterwards.

But still, we have nothing. They haven’t said when they said, oh, we can’t meet his needs. Devastated.

Just so upset with them, disappointed, kind of betrayed by the education system. Yeah, and there was a time where, interestingly enough, we did find a special education in autism school for him to go to. But once again, unfortunately, they could not meet his needs.

They weren’t working well administratively in the first place, and so everything fell apart. And he actually ended up eloping from that school four times within two days. Oh, wow.

Was it a school just specifically for kids on the spectrum? Yeah, can you believe it? It was. It was a elementary school, primary school, just for autism that had locked doors to get in, but not to get out. Oh, right.

So my child could leave freely, but I could not get in to get him. So very interesting. So we ended up having to bring him home again.

And I just said, this is what we’re going to do. We’re going to stay here. And when he was eight years old, he did go have an IQ test done.

They didn’t give us an IQ number, but they just told us that he had a working memory. He used 99% of his working memory, which is plenty of memory going on. But at that time, he was doing, he was at like a 10th grade level of math, an eight year old.

So now that he’s 12, he’s just so far beyond. In fact, I’m not even sure what step I take next. I’m just going to say, how are you going to keep one step ahead of him? Oh, heavens.

Some people are suggesting maybe I reach out to our community college and just see if we can visit a couple of classes to see if he would be interested. Socially, he’s not there. He would not maintain a classroom environment like that, but possibly some online classes where he could at least further his education.

I was just going to suggest that, or even some private tuition. Yeah. Now, our daughter, she was in a public charter school, and we also know now she has dyslexia as well as autism, but her first and second grade teacher refused to test her for dyslexia because of her shining personality.

Oh, gosh. Yes. And so like you said, the diagnosis process is severely misused here.

They’re not looking at the important measures that children need when my child came home, and she was still writing backwards and could barely read at her grade level. I just had to take it upon myself to homeschool her, and luckily, the online school I’d been doing with my son for the last several years, I said to them, she needs tutoring, she needs testing, and within two weeks, they were on it. They got her all caught up.

So I think that we’ve had a lot more success with online school, but this year, she will be going back to a brick-and-mortar school. Oh, wow. How do you think about that? Socially, I know she needs it because she’s a very confident, social, outgoing… Well, she’s kind of shy, but with her friends, she’s very outgoing, you know? So I think that is definitely a piece that she’s been missing.

So I hope that the academics, I hope that she’s able to be okay and feel comfortable. We’ll just have to kind of wait and see. She’s 10.

Okay, so she’s not quite hit the teenager, she might be the right time. You’d think she had, but yes. And what’s the relationship like with her brother? Amazing.

I mean, I couldn’t be prouder to have her just caring and loving and always looking out for him. In fact, she pushes him in so many ways that we as parents give him a little bit more, like, safety zone, right? And the other day, he said, how can I get taller, Mom? How can I get tall? Because his sister’s two years younger than him and about five inches taller than him. And so he said, how can I get tall? And I said, you have to eat your vegetables.

You’re going to have to do it. Isn’t that the answer for every parent, right? And that’s something he will not do. He has huge food aversions like his father.

And so that is something we’ve really struggled with. But the other night, she came and she said, Mom, I just got DJ to eat a carrot. And he is down in his room eating carrots now.

And he tried a piece of lettuce. And he tried a snap pea. And so I was just like, what? How did you do that? So she just told him if he wanted to get taller, he should try these vegetables.

And she can convince him of these things. So what’s cooking like you? Because I know in my house, I have to cook different things. And then I’ll just have a bit of water.

Right? Yeah. It’s about the same too. And I accommodate when my daughter was younger, she was very sensitive to gluten and dairy.

And so everything had to be made separate for her. But now that she is a little bit older, it seems to have worn off. I don’t know what you call that.

She seems to be OK with those types. So it’s a little bit easier to integrate everybody. Our son doesn’t eat with us.

He never has been able to. He kind of has a gag reflex when he sees food. So for him, it’s really hard, which is kind of funny to go back when I realized, OK, my husband’s food aversion to seeing people eat is the same as my son’s, you know, not wanting to be around food.

OK. So we don’t sit at the table altogether. We only do it on Christmas.

Oh, yeah. Right? And then maybe one other day, but then they like to eat separately. My husband likes to have a tray on his lap.

And then my son Patrick likes to eat on the table on his own. He doesn’t like to watch his dad eat. And Angelo, because he doesn’t like to use a knife and a fork, he likes to feel his food like the texture, where Patrick thinks that’s disgusting.

Right. Oh, bless the heart. So it’s just that it’s just the way we live.

And it’s just that other people might find it. Oh, they wouldn’t be able to cope with that. But you know what? You just got to go with what works.

You do. I kind of liken it to having a house with round corners. There’s no sharp corners in our house.

They’re only round. And so it doesn’t make any sense to everyone else, but it makes all the sense to us. And that’s what matters, right? What type of food do you like? You know, I’m very open.

I don’t necessarily like things to be too spicy, but that’s about it. Other than that, I’m pretty much… So your oldest deaf daughter sending you YouTube videos for female authors and presentations. So questioning herself as well at 22 years old.

So what can you tell me about that? Yeah. You know, she really struggled in her life, unfortunately. And I think that finally kind of having an idea, it was after… I guess it was right before her little sister was diagnosed that she started kind of questioning and, like you said, sending videos, Olivia Hopps’ videos.

She’s darling on YouTube if you haven’t seen her. She just has such a great… She was diagnosed in her 20s. And so she just has a really great experience to share with people and be able to kind of go through those things like, you know, in her life and say, hey, this was like this for me.

Maybe you should look out for those things to these girls that are out there now, which is great. She hasn’t gotten… She hasn’t, you know, proceeded to go get a diagnosis, but… And we haven’t actually spoke about it since then. We haven’t spoke to her in a little bit.

She’s busy, you know, adulting on her own now. Sometimes you don’t need to go for diagnosis as long as… Sometimes people do get a diagnosis and they don’t want to do anything with it. They just want to know.

That is… That’s me, exactly. I just… Like I said to my mom, you know, it’s not like I’m needing to go get services or I need to have anything, but to just know how I fit and where I fit. Because even before I had found out, I would say to my husband, well, where’s my spot? You guys all have a spot on the spectrum.

Where do I fit in? Like, where do I go? We’ll join you. Now I know. I’m that one in that little purpley blue spot over there.

So I briefly touched on talking about first responses because we did some training in Essex and I’ve spoken to… I’m working with the Metropolitan Police with my husband at the moment. So you sent me some information about community work, hospitals, vehicle safety kits, emergency responder training, a consultant. So what is it that you’re doing in that particular area? So with the hospital, I’m teaming up with a sensory room designer and we are actually taking one of their emergency rooms and turning it into a sensory room and then training the staff on better autism practices and communications and things like that.

Then we’re doing the same with the police departments. We’re going and training them on autism encounters, on autism communication styles. We’re even going to have some family meet and greet sessions where we can have a nonverbal child with a communication device so that the police can understand this is what this looks like when you see a child like this or an individual.

The vehicle safety kits are something I created because a member of my community here in Salt Lake City, her daughter is nonverbal and she got out of the car once at a stop sign and went to a stranger who didn’t believe that she was autistic. She thought it was a kidnapping situation so the police were involved and the mother had a hard time proving that it was her child because kids don’t have ID on them. I created these kits that show it has a sticker that says an individual with autism is on board in this vehicle.

There is a personal profile also in the vehicle. You can find this person’s needs. It’s better than just saying there’s somebody in the car with autism.

Then it’s like, okay. But this actually says, find the profile, find this child’s needs, find this individual’s support systems and then they can better assist. I made those basically for this little girl and her family and then everybody wanted one.

I had to have fundraisers to create and keep making them descend about. Sounds good. I remember when Angelo, because Angelo likes to rock and high pitch squealing sometimes when he was younger, I remember I was getting some petrol at the petrol station and there was some police there and they heard Angelo squeal and I think they thought he was in some sort of distress.

They came up to me and knocked on the window and asked what’s going on type of thing and I just said, oh, my son’s autistic and they just asked me to get out of the car. I remembered I had some books that are just not stupid which is a book that I had written in 2009 and I just got the book out of the car and just showed it to them and then they just thought the penny dropped because there was a picture on the front with me and my son, the eldest son, I said, just to prove that this is my son, he’s autistic and it’s just, this is the way, he’s just a bit stressed at the minute to have a bit of a sensory overload and they just said, oh, that’s okay, thank you. And I have spoken, even my eldest son as well, he used to find the sirens of cars quite stressful so if there was a car that would be going by with a siren, my son actually got stressed and ran using his teenagers and he just sort of started running and ran across the road so the police car stopped and asked if he was going to stress and all the rest of it and just said, oh, please, can you ring my mom? So anyway, they rang me and I just said, oh, my son’s got Asperger’s syndrome and it doesn’t make the sound of police car sirens and he’s fine, he’ll just come on his way home so I just got to patch it and I just said, oh, please, can you ring my mom? And so, you know, he did come across these sort of situations hence why we’re trying to raise further awareness and that’s why I’ve been working with the Metropolitan Police.

We did some awareness raising and we did some stuff online as well and then one of the commanders came out and said that he was autistic and he not shared it with people. So that was exciting. Oh, very.

Yeah, so, yeah, it’s just about, isn’t it, It’s just about banging the drum. It’s about trying to open a few more doors and just to try and just raise bird. You know, there is a lot more awareness raising, but what we’re trying to do is trying to get acceptance and to show that everyone is so different.

If you’ve met one person with autism, you’ve met one person with autism. Isn’t that the truth? Yeah. That is so true.

Oh my gosh. It couldn’t be. Yeah, more.

Right, because we’re a program, a radio program about mental health, well-being. What do you do for your own mental health and well-being? What do you do to help yourself relax and just be, Sarah, not a wife, not a mom, not an autism advocate, just Sarah? Yeah, I mean, I love to take walks when I have a chance of, there’s a nice nature-y canal by my house. So I often like to, you know, get out there when I can and take a walk.

I also find myself, I know people don’t think that this is relaxing, but I love graphic design. I can get lost in Canva. I don’t know if you know what that app is.

I’m trying to use that. Oh, boy. You just clicked with me.

I could spend hours in Canva creating. I think creating is my happy place. And that’s where I can just really start to put my ideas into action.

And it’s incredible what an idea can do. What about, what does he do? Yeah, he likes to watch YouTube. He likes to kind of like his son, right? And I think that we just like to spend time together.

We like, we laugh a lot. We have a really fun relationship. And so I think that we like to spend time together.

We like to go on drives and nature. Our life has been a little chaotic in the last, you know, three months with the puppies. So we haven’t been able to get out a lot because we can’t go for many hours at a time.

So I’m looking forward to when the time comes that we can have some more of those experiences again. So do you have a talk as a husband and wife team when you do presentations or workshops or whatever it is that you do? I wish. I did do a podcast on another, you know, podcasters show called marriage on the spectrum.

And she, at first she wanted him to be on. And so we had gathered questions, but then when it came down to it, he just was so overwhelmed. And he just said, tell her I can’t do it.

I can’t. And so I said, no problem. It’s okay.

And so I, she asked me all of the questions. I wrote them all down and then I got his answers and just answered for him. So that, you know, his, yeah.

So that his message was still came across, but yeah, I think maybe, I hope in the future, he might be open to doing it cause he is just absolutely brilliant. Our son didn’t become a genius because his parents weren’t, you know. So what’s the field of work is your husband in? He does construction.

He does remodeling and yeah, and finish carpentry. So if you’ve got all that around your house, then? No, of course not. Isn’t that how it goes? It’s just like me being a massage therapist, but nobody in my house gets massages.

Oh, so I didn’t know that you’re a massage therapist. So tell me how you got to that. It was, I actually used to, I’ve had many careers in my life.

I used to be a paralegal. I worked as a legal paralegal for many years. And I got so fed up with those stuffy attorneys that I decided I’m going a completely different direction.

And I sent myself to massage college and became a massage therapist. And I did sports massage. And so I did have the opportunity to work with our local Utah Jazz basketball team.

And so I did sports massage for them. And that was a lot of fun. That sounds good.

Yeah. Find you and find out about the work that you do. Where can they find you? Yeah, they can go to sjtrials.org. You can even just Google sjtrials and everything may comes up.

So you’ve got all of you’ve got social media as well. Everything Facebook, TikTok, Instagram, LinkedIn. I’m not too much on Twitter, but everywhere else.

Yeah. Okay. So what plans have you got for the future then? Well, this coming weekend, I actually am hosting and have created an autism, a virtual autism summit where I have brought 20 autistic presenters and four live podcasts.

And so we’ll be presenting Friday and Saturday, August 12th and 13th. And I have some really top advocates. Love on the spectrum, US.

Yeah. Yeah. Danny Bowman.

Yeah, she’s one of my oxidists. Oh, I just love her. She, I interviewed her on my podcast last year.

And so we’ve just had this relationship that we’ve continued to have. And she’s just, she’s so fantastic. She’s so darling, Rachel Barcelona, who is up and coming.

She’s a supermodel, my heavens, Anthony Iani, who is a basketball player. And he also does a non anti-bullying campaign that’s really popular in the United States. We have so many.

We have a communications expert, Dr. Tim Goldstein. We have a parenting mindset doctor that’ll be starting the summit off on Friday morning. Her name is Dr. Diane Hudson.

I mean, there’s just so many amazing. If you wanna log on, can they still log on to it? Yes, yeah, absolutely. In the five minutes then.

Yep, you can go to, it’s called the One in 44 Tour. One in 44 Tour. And you know, every country is different.

Right now in the United States, autism numbers are one in 44. And so that’s what that came from. My husband just said, that would be a cool name.

So if they miss it, is it gonna be available online afterwards? Yeah, if you are, it is ticket sales. And so if you, their tickets are $25. So if you do get a ticket, then it is, there’s a replay available for three weeks.

You can go back and watch anything that you’ve missed or anything, like I said, there will be 10 speakers each day, two podcasts and two musical performances. Oh, wow. So I bet that would have been a mammoth task to call.

I can’t believe I did it. I don’t even know how. But yeah, I’m really looking forward to it.

It’s beautiful. The event page, the producer is a good friend who I’ve done other podcast summits with. And so it’s so exciting to have everybody come together and be so excited to bring their information and share their stories.

So again, if people wanna find you, where can they find you? sjchilds.org. And you can find out about that summit on the blog page. Okay, so did you say you’d written some books? Yeah, the children’s books, the sjchilds books for children are also, you can find them at the bottom of the website. When you go there, you just scroll down and the books are all listed at the bottom.

Oh, okay. So it’s been really, really lovely talking to you. So nice.

And finally, it’s taken a little while. I know, right? So sorry, I missed the first time around. I didn’t have, I had written down 2 p.m., which is your time.

So I just wanted to remind everyone about the first steps project that we have. So the closing date is the end of August. So that’s August the 31st.

So if you have got an idea that you’d like to set up an online business, so you’ve got something that you started that you haven’t quite finished yet that you think you might need some help mentoring or some funds towards it, check the charity website. It’s called First Steps. And we are giving a thousand pounds to kick off the project for you and some mentoring.

So that is on the charity website. And again, we have our resources page. So if you’re interested in having a look at there, lots of different resources on that page and just checking the website out in general, see what’s going on with our events.

Subscribe to our free newsletter that comes out every quarter. And if you’d like to be a guest as well on women’s radio, please contact the charity and we can book you a slot probably be October now, but please contact us and we can have a chat online as I am with Sarah. So yes, it’s just been really, really lovely to finally speak to Sarah.

And I want to wish you all the best to your family and to your children. So yeah, so really, really lovely chatting to you. Thank you for taking the time out.

Thank you. And same to you. I’m so excited to continue to get to know you.

I appreciate your time. Oh, thank you. So again, don’t forget www.anna Kennedy online.com. So don’t forget if you want to be a guest on the women’s radio station, please contact me and we will book you a slot.

And I’m so excited to be going to all my fun days that are happening soon. And I’m just hoping that London’s going to get a bit of rain because we need it dreadfully. Oh, so thank you very much again.

And everyone, please take care one day at a time. We’re going to get there. All right then, bye.

Bye. Bye, Sarah.

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