Episode 2: From Doubt to Diagnosis: A Mother's Quest for Answers - with Sally

In this episode I chat with Sally, a mum of two children with ASD and a busy business owner - about her struggles, the many and constant ups and downs, what she's learned along the way and advice she's happy to share with other parents.

When Sally's son Arley was 3 years old it was suggested to her by a friend to have him assessed for ASD because he couldn't touch many objects and other apparent signs. A group of therapists evaluated him for three days, they couldn't make a diagnosis but encouraged her to seek further help so she did. Arley was then 4 years when when officially diagnosed. 

Sally's view at the time of Autism was 'Rain Man'; that's what came to mind for her when she thought about the condition. It took her two years to come to terms with Arley's diagnosis and to learn about and understand it.

When she went down the track of trying to have her daughter Carmie assessed and diagnosed it was a real mission. Her trusted pediatrician and other therapists didn't believe her when she went to them for help to have evaluations performed. Eventually she found the help she needed and at 8 years old Carmie was diagnosed with Autism.

Both children have multiple conditions and associated challenges.  It's been a roller coaster ride, and continues to be, for this family but they're rolling with the punches, always learning and trying to make the best choices as a family unit.

We hope you get a lot out of listening and we would appreciate your feedback, so please reach out via comments or email us. We'd love to hear from you.

Clint
Autism & Beyond Australia

If you enjoyed listening and found this content valuable we'd appreciate it if you could provide a positive review and to share this with your network to potentially reach and help more parents and families 🙏

Transcript

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you

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G'day and welcome to Beyond the Spectrum Podcast, Conversations with Parents on Autism and Beyond. My name is Clint, I'm the host and I am also the co-owner of Autism and Beyond, where we work with children in one-on-one coaching as well as support services. The reason that I decided to start this podcast has come from my time working with

children, coaching them and talking to the parents and hearing their experiences and the challenges and the trials and the tribulations and all that come with raising an autistic child. And I know there is a lot of support out there for families and connection for people, but I think it doesn't hurt to really reinforce those connections and give another spot for parents to connect and hear other stories from families and what they're going through and how they overcame it. If you are feeling like you would like

for us to interview you and share your story and your family's challenges and successes. Please get in contact through info at Autism and Beyond. Welcome. First episode is a client that I have worked with for quite a while. I've worked with both of her children. Her name is Selly. I also know that the kids are looking for friends. if you are based on the Sunshine Coast and you think your children...

may connect with Carmen and Ali, please reach out and we'll get you in contact with Sally. Have a listen, enjoy the episode. Cheers. Hi, Sally. Thanks for joining us today on our very first podcast. So appreciate you being here. Let's get into it. So obviously I've known you guys for a little while now, but those listening and watching, how old are your children and how many children have you got? I have two kids. My eldest is 12. She is, her name's Carmen. And then I have a 10 year old boy.

called the ARRI.

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They're the loves of my life and the bands of my existence. I get a small sample of that every so often. Yeah, it's quite well. Yeah. Awesome. And obviously again, I know you guys and know they've been diagnosed. Did you sort of have any concerns about getting them diagnosed and sort of thoughts on that? When Ali was three,

A friend of mine suggested that I take him to, it was like a local government funded place where they helped kids that were a little bit different and she just suggested it because he couldn't touch anything. He couldn't take his shoes off. couldn't, like all the other kids were eating watermelon and he'd have his cut up with a knife and fork. That's back when he ate watermelon. He doesn't do that now. So I took him to this place and there was a group, like it was a whole team of, was a psychologist.

an OT, a support worker, was just a whole speech therapist, just a therapy team, and they evaluated him for three days. And they actually couldn't give me the diagnosis, but they just told me where to go, that yes, you should pursue a diagnosis. And I didn't believe them. And instead, I just took him to an OT to get the sensory stuff done, and then the OT had worked with Autism Australia.

And this was, he was almost four at this point. And then she, finally said to her, you think he's autistic? And she said, yes, go get him assessed. And so I did. that's Ali was the first one. He was four years and two months when he got diagnosed. Right. Right. And, and did you sort of wrestle with that? What was the reason you didn't sort of, was it fear, fear around being labeled or people looking at yourself or?

Like we've always been different. We're vegetarian. We had decided to homeschool when Kami was five and just, she was, sounds awful. it doesn't. Sounds bragging, but she was too bright for school. She was reading novels, you know, at five. And I had actually tried to take her to a school to get in and the principal just said, look, she's just going to be bored. So that's when I walked out and said, we're just going to homeschool. And I didn't know any homeschoolers at that point.

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But we've always been a little bit different. So I wasn't really caring of the stigma. just kind of the idea of autism for me was sadly it was Rain Man. So I just leave it. I thought there's no way. And then when you get the diagnosis, then I started researching and spiraling and it took me about nine months to a year to just come to grips with it. Yeah. Wow. Okay. So yeah, it was hard. Down the rabbit hole.

Yeah, I'm the type of person that would jump straight into trying to fix things. I, I raced into getting therapies and all that stuff. And he, I mean, he'd already been seeing the OT when he was diagnosed, but we just, got all the help we could. but we were in a small town in New South Wales and there just wasn't enough support there. We, you know, not a great pediatrician, just our OT was really nice, but she, this was years ago. He's six now, but.

So five years ago I was telling her that think he's got a PDA profile and she didn't even know what it was. It was, I mean, was unheard of here, but I had done that much research that, you know, I just knew more was going on. And then a lot of the therapists had told me something's going on with Kami. But the pediatrician just kept looking at me like I was crazy. So she had a speech therapist, did a report saying thought it was autism.

She had an occupational therapist do a report and tell me that she's got dyspraxia. All these different reports got done. And then the pediatrician just said, she's fine, no, you're crazy. And so I took her to his recommended psychologist and she said, it's ADHD. She's really quirky, but it's just ADHD. And I just knew it was wrong. I couldn't get the support that I needed. So we moved to Coffs Harbor at that point. And then I went to a pediatrician, didn't say anything about

My thoughts just presented him all the reports on car mean he just looked at me and said she's autistic you know that right and i'm like yeah I know she's autistic but no one else has believed me. Yeah, so she was eight when she got her diagnosis. So ali's diagnosis is autism level two three he's got adhd his really strong pda profile as you know, that's pathological demand avoidance for those who don't know. he's got

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which is avoidant restrictive food intake disorder. So feeding him is difficult and he has anxiety disorder as well. And Kami is a ASD level two ADHD. She's got dyspraxia, hypertonia. She's also got a speech disorder called cluttering, which is a neurological speech disorder. And she's got anxiety as well, but it's not chronic like Ali's, but it's just, you know.

level anxiety. you, I guess, relieved now that it's sort of all being diagnosed and given you that sort of path When she got her autism diagnosis, that was four years ago, she walked out bouncing so happy, as did I, because we had answers. We already knew she was different. was just now we had an avenue to get some help.

for her. and by the after I got through the first year of Ali being diagnosed, I, you know, I came to understand that autism is not a bad thing. But there was some really special gifts that come along with it. And we kind of dove in headfirst and became a very neuro neuro affirming family. Yeah, it's funny that you said, you know, it's, it's not a bad thing. know, a lot of the kids I work with, they all know their diagnosis and

Some of them, yeah, do look at it as a negative and my thoughts on it, I always tell them, I say, it's your superpower. And again, they look at me like, what are you talking about? And my response is, well, the way the world is heading, we need people who think differently. And I think the autistic kids that I work with are those different thinkers. And I think we'll be the ones leading the world to a better place, I think.

Kami is very positive about being autistic, Ali's not. So last year we did a poster and we did the benefits and the challenges of autism and I showed them how, yeah sure they've got challenges, plenty of them, but their gifts that come along with it are so plentiful that, you know, it did kind of balance it out and I don't think he's nearly as concerned now about being autistic as he used to be. Yeah, that's good because yeah, hopefully, you know.

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people listening realize that it's classed as a disability but it's not really. It depends on how deep their challenges are. That's true. And depends on, well, on the day. If they've eaten, slept, all that kind of stuff, how functional they are in the day, which can change all the time. for the kids that, I mean, guess even people that can't, aren't verbal, there's still ways for them to communicate.

I know, I find that the kids being autistic has been a real gift for us in understanding just differences, differences the world over and being accepting of many different people. It's just been, it's been eye opening. Yeah, yeah, definitely. I think for myself, I guess I haven't always been the most empathetic person when I was younger, but...

Yeah, working with with kids and and Yeah, I don't don't people always mention how patient and calm I am I'm like, yeah, I sort of I guess that's why it works so well, but yeah Yeah, I just find that that interest that sort of now I I guess I always look at the positive with people. Yeah, if someone's rude or whatever, you know, it's like maybe they're having a bad day or you know, I'm always looking for the

the best in them, unless you're a bad driver then it's not a skit. so what does a typical day look like in your house? If there's such a thing. Ali is up early. We have to leave a screen available for him. I hate it.

But just when he wakes up he wants to be he wants that stimulation right away and if he doesn't get it he is in my room just jumping and bouncing and Driving us mental. Kami on the other hand we have to drag her out of it Yeah, right. Quite literally like it's eight o'clock up you get it's 8.30. It's time to get up No, don't come out in your robe go get changed It is a struggle to get her motivated at all. Her energy is at a zero in the mornings and it's at a ten in the evenings

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Yeah, right. Yeah. So on the day that we have supports like we see you, those are the good days because I know the kids are going to get out and they're going to get social. Yeah. So we do it. We try to do activities and then have a lot of downtime. If they don't get their downtime, you know, they're not happy kids. On the days that we're home, like today, we went to the park across the road.

and played some games together, which is our new thing. Yeah, nice. That's awesome. know. Yeah, yeah, we played cricket today and a few other games. My son spends a lot of time on screens. He's learning how to animate on Roblox. And Kami is actually really into writing stories and animating on Procreate. So she's a lot of drawing. I've got a story at home that she wrote. I got her to sign it. when she's the next JK.

She's another one at the moment and she's submitted a request this morning. some, she's trying to, I don't know, achieve some warrior cats script award. I'm not sure what it is, but she's all, she's all about writing and doing her own stuff, which is great. She's 12. So it's really nice to see her getting more independent and having goals. Yeah. Yeah, definitely.

And I guess finding that balance between the screen time and the outdoor time is always a big challenge and great to hear that you're implementing park play now. Today was day two so it was difficult. You're on a roll. Well yeah and had to, I can't just spontaneously go, okay kids we're gonna go to the park. It has to be something that I've prepped.

for a long time and then told them, okay, this is what we're do. We're gonna start in two days time. We're gonna do it when we get up. You're gonna have a quick snack and we're gonna go. And I have to have it all planned out. Nothing is spontaneous. Yeah, okay. So that's another thing to consider in your day then. No spontaneous play. No, no spontaneous play, no spontaneous meals. Unless it's like, you know.

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at night time and I'm like, you guys can stay up an extra hour. then it's like, woo! As far as activities and day-to-day stuff, nothing spontaneous at all. It's interesting that you say that because the stuff I do with them is very spontaneous. yeah, it's strange that I guess I can get away with it. And I do it for a lot of the kids I work with. Parents are like, no, they need structure and they need to know exactly what they're doing, when they're doing. And then here I come along and like, right, let's do this. Let's go over here.

And I think someone explained to me was like, it's a fun thing. So if it was like an everyday element, it wouldn't work, but because they enjoy seeing me, it's fun. Like, I guess I can get away with a bit more pushing a few buttons. I think also that Clint time is time for them to be a little bit unsure of what's going on, but they know they're safe and they're to come home. Yeah. You know what mean? They've got whatever, like on Fridays when you take Ali, it's two hours where...

He has an idea of what's going to happen, but he still knows he's coming home in two hours. He gets pissed off at you all the time. I bet. He makes it home safe and he's always better for having gone. Yeah. And I always try, yeah, I do push his buttons for that reason, especially time is the big one. Like, I've had enough, I want to go home.

And for me, it's like, that's no good. We've still got an hour and 45 minutes to go, It's been 15 minutes. It's been 15 minutes. then I guess I do have strategies of, hey, let's sit down and have a drink and let's just gather ourselves. I think it's allowing that break in thought process. then like, hey, let's go 10 more minutes. I'm lucky he doesn't have a watch because.

My 10 minutes is usually an hour and a half. Don't let him know that. There's couple of watches in his drawer. be able to use He started to question me about the time the other day. Well, that's good. So yeah, okay. So it's interesting that you've got one who's high energy mornings, other ones low and, you know, trying to find that, that sort of, that balance, isn't it? Is that.

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Would you say that's one of your biggest challenges that you've faced along your journey or? Geez, challenges are, each child has the different challenges, really. They're both so different. Autistic kids are just like anyone else, they're all different. So you can't just put them in this box and say this is what they do. So Ali's biggest challenges are his anxiety. It's huge, it stops him from doing many, many things, including...

just trying new foods, that kind of stuff. Fear of failure, so he won't try to do a drawing because he thinks he's gonna fail. He'll only do things that are new, he'll only try and learn new things that are related to other things he already knows. So I can't ever come out and just go, okay, I'm gonna teach you this, because if it's not connected to, you know, hundred other things that he's done, he freaks out and says he can't do it. So we homeschool, makes.

learning extremely challenging. his anxiety is a huge one and also his anger which comes from anxiety. That's pretty big. He can't emotionally regulate very well and his first emotion that he goes to is anger. So that's very difficult. We've done a lot of therapy around that. He's not really violent anymore but he used to be very violent.

And that ended probably about three years ago, but it was pretty bad. Yeah, right. Okay. Was it towards you or others or just? Mostly towards me, but towards Tommy and Jeff too, but mostly towards me. And we started getting a lot of help with it when it became out in public. So, you know, people have to come and pull him off me and just mortifying and soul crushing to have your, you know, six year old kid tearing into like a banshee in front of people.

You know anything he thinks about it now. He's just beside himself. I'm so sorry You know he was out of his control it was nothing that he could control so took a very long time to get him out of that Yeah, and it was quite harsh getting him out of it, but we had to for everyone's safety Yeah, I've noticed you know when he does get pissed off at me. You know he raises voice and Hate you and so at the end of it. Yeah, I always

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pulling me so hey look just calm down and yelling at me and whatever's not going to get you what you want. And he always says sorry. He's like I'm sorry. So yeah I guess. He's the kindest soul when he is level and he is so empathic and kind and generous but when he's a bit off kilter he's a tough cookie.

Kami's challenges are, her big ones are, well, anxiety at the moment, but we're treating that, we're just upped her anxiety meds and the psychologist is gonna start working with her specifically on anxiety. But her posture, because she's got hypotonia, that's when your brain, so say your muscles are extending and contracting like this.

With people that have hypertonia, their brain doesn't send a message for the muscles to contract again, so they're quite floppy. Right, right. And hers is mainly in her torso, so she's got a very floppy torso and she's not strong, so she's quite hunched back. We're doing a lot of physio and exercises to try and build up the strength in her torso. Yep, yep. So that's more of a physical disability. As far as the autism goes, it's more social anxiety.

where she struggles. Her gifts, mean, she's, the stories that she writes and her imagination, her vocabulary, the amount of books, she's read 1400 books at least at this point as a 12 year old. Yeah. And novels that are, she read the Hunger Games at eight years old. She asked me for the Hunger Games for her birthday. And I hadn't read them. didn't know what they were. I'm like, are you it's a series? My friends were like, are you crazy?

Right, so yeah, okay, so obviously a few challenges. Well, I know the answer to this, but support network, and again, it seems very common with a lot of kids I work with, don't have a big, I guess, support network in terms of friends. Obviously, they've got all their therapies and that sort of stuff. And it's one thing that always upsets me is that lack of friendship amongst kids.

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So do you have a guess a support network for yourself and for the kids or are you sort of feel like you're on your own? Support networks for myself are really hard because when I came into being the parent of autistic kids I didn't know anyone else that had autistic kids and you start to

go to your friends and you're not complaining but you're just venting and stressing and you're trying to tell them about your struggles and they look at you and yeah, my kid does that too and you just think there's no way in hell your kid does this too so please just let me say what I need to say and just make me feel a little better, just hear me I had a lot of friends, sorry I just got some cramps I had a lot of friends not a lot but a couple of friends just pull away at the beginning really? and it was probably for the best because

they were driving me as crazy as I was probably driving them. So it's hard to find support. When you find a parent that has kids similar to you, that is the biggest blessing. Ali has one little mate who's quite similar to him and his mom and I have become friends and it's really, really nice to have that person to talk to because we're the only ones that have children that we know as challenging as our sons. So we can bounce off each other and give each other suggestions.

As far as the kids go, Ali has him, his little mate now. And there's another neighborhood friend that we have that, you know, they get along quite well. Kami goes to some social groups. She has two social groups or three social groups a week that she goes to and they're her saving grace. She loves them. And she has a friend in the US that she chats to online. Yes. Yeah. Okay. But yeah, well, that's good.

And I guess one of the other things that I want to come out of this podcast is the actual, the ability to connect parents as well. And hopefully, you if you're okay, we can put your details out here. So if anyone's listening and resonate with your story, go, Hey, I want to talk to this lady. And kids birthday parties, I hear so many stories of birthday parties where no one turns up. I actually, I went to a birthday party because this little boy had a

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birthday party planned and all these people were coming and then last minute literally everyone pulled out and mum posted in the Autism group about this. like, yeah, I'm going to a class and I was the only, know, myself and him or there was a couple other kids and we literally just played for half an hour, you know, because it's like I just didn't want him to have no one at his birthday party and funny enough this little boy, his mum was going through some

abuse and domestic violence issues. And she said, yeah, he doesn't usually connect with males. But as soon as I came, he was just climbing all over me and we're wrestling and off we go. And she was shocked at like, my goodness. Boy, just, you know, doesn't connect with my house is just often and she was fine. yeah, it just breaks my heart to see it's like, yeah, birthday parties and no one shows up. Yeah. So, yeah. And hopefully, yeah, hopefully we can, can share.

the stories and get people to go, hey, I want to connect with that or my child will work well, play well with your kids. So yeah, that's sort of one of my ideas. Yeah. So what's one key piece of advice that you'd like to pass on to other parents? Only one. Two. I'm generous. Okay. advice. Geez, there's a lot.

Go with your gut is one of them. if you have a therapist that, a lot of these therapists are young, like fresh out of grad school, which fine, all power to them. But if they don't have children and they haven't been around autistic kids or have autistic family members, it's really, really difficult for them to understand what it's like to live 24 hours a day with this neurodivergent family dynamic.

So I've always had to go with my gut. If a therapist is telling me things and it just doesn't feel right, listen to yourself rather than the therapist is what I think. Because sometimes they suggest things. Some of them are heartbreaking, some things that have been suggested to me and that I followed through with and that I wish I hadn't. When I was younger and more involved with when Ali was little, I...

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didn't know what I was doing, I didn't have all the research that I had and I was listening to these people and some of them were having me walking outside and just... scary stuff. And it didn't feel right, but I didn't go with my gut. So that's one piece of advice, go with your gut, learn your children, learn who they are, listen to who they are. If they're not telling you with words, listen to what they're saying by their actions. So if they're freaking out, if they're unhappy, if they're crying, there is a reason behind that.

Your house needs to be a safe space for them. The world is chaotic. From the moment they wake up, their world is chaotic because their sensory information is getting overloaded. From the minute they wake up, they can hear the wind that you can't hear. The alarm's making a loud noise. There's banging and clanging in the kitchen. The neighbors might be doing something. They're coming into a world kind of with a shock every time they wake up anyway. you know what it means? they're already... So say a neurotypical brain...

gets that shock of waking up and like maybe something like you don't have any coffee, say, you and you're pissed off, you, damn it, I forgot to buy coffee. You get pissed off and then you come back down and then something else might take you off. Like, I've got a phone call and it was like an Amazon fake phone call. Ticked you off, you come back down. For autistic people, they get that first level of anxiety and then it goes to another level and then another level and it never comes down.

until the end of the day, it just keeps building until that explosion comes. So you have to teach them ways to bring them back down, and if it doesn't, you have to teach them ways at the end to chill out, to find themselves again, get centered, have that time so that they don't burn out and get overwhelmed. In this world, it's not made for them. So I believe truly that it's the environment that creates the disability. So you need to make your home as...

safe for them as possible as, you know, if they don't like their bright colors and, you know, lots of chaos in the house, then tone it down. Paint their room, you know, a nice soft pastel color. Take all the clutter away. Keep noises down. Change the lighting if you have. Make it a cocoon for them so that they can always come home to a place where they feel safe. Because that's what's the most important thing for autistic people. They don't feel safe because they can't guarantee what other people are going to do. time they leave the house.

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and talk to someone else or human beings are unpredictable and autistic people need predictability. whenever they're trying to be social going out for an environment it is unpredictable and it's scary. So their anxiety automatically, even if they don't know it's scary, their anxiety goes up and that's why. So they've got to come home to that safe space and feel warm and welcome and you know where their disability isn't a problem. that's my biggest piece of advice really is to just

make them safe. Yeah, nice. That's good advice. Seems like you've done this before. Yes, I have. I've got a lot of information. So I guess last question. What are your goals for the future? I guess for yourself and for the kids? Like, do you have any any long term goals where you want to get towards? do. I've just sold my business, which was, as you know, it was a brand for neurodiversity. was a neurodiversity clothing.

so had t-shirts saying work up autistic, things like that. It's great. My entire life was about neurodiversity when I was doing it and I've moved on now to do something for me so I'm going to go back to painting which is awesome. My goals for the kids are to, this year I'm going to figure out a holistic version of what, like a goal for them. So for Kami I want her to be strong.

I want her to have friends, want her to be writing, I want her to able to set goals and stick to a schedule and you know as she's getting older she needs to be able to have priorities and follow through with them for herself. And with Ali I want to find him some more friends and get him off his screens more. He's very into Roblox, he's doing coding and all that stuff but I think still he needs to get off the screen a bit more and get active. He overheats quickly as we exercise as he's done in.

Two minutes. don't know how got it. How do you know? So I'm trying to build up his resilience a little bit. Yeah. I'll have to chase him around the park a little bit more then. Yeah, please do. Threaten us, him off the bridge or something. Make him really run. this is recording. It's on audio now. Yeah. Awesome. Excuse me. Yeah. Is there anything else that you want to add or any?

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thoughts? Yeah I have one really good tip that I have. I learned a long way from the autistic community and from therapists, so ways to help prevent a meltdown. This is the big daddy one that a lot of people can use tips on. So basically when the child is having a meltdown you of course need to make them feel safe but their nervous system has to be kind of snapped out of it and if it goes too far there's nothing you can do they just need to get it out.

and calm themselves down. with Ali, it's the iPad in a closed room. Kami wants to just be alone and feel it, and she gets overwhelmed and she has a cry. But as that meltdown is approaching, you can kind of see it building up. You can see the stress, pupils dilate, the face gets red, whatever the signs are for that kid, get them to hold an ice cube in their hands. It will snap the nervous system out of it. If they don't want to do that, give them an ice block or something cold.

or give them something tangy or sour like nerds candy or skittles because that sour tang will snap the nervous system if that's not working actually have them eat something something that they like it sounds like you're rewarding this meltdown but meltdowns aren't controllable so you're not giving a reward for something because they can't control it in the first place it's not a tantrum you're not rewarding a tantrum

So give them some food if they can eat it because your brain, the way our human body works is that if you're chewing, your brain thinks that food is a pleasurable activity. So if you're actually chewing something, you can't stay mad. So it's very difficult. So if you can get someone chewing while they're getting angry, it actually changes things inside and they manage to calm down. So ice cube, whole things, sour things, and getting them to chew. Even gum, chewing gum will work. There you go. Very good tip.

Take some ice cubes with me. Yeah, I didn't know that so as a handy little tip so awesome things for sharing that and Thanks for being guest number one on our podcast Absolutely, yeah, I guess we could definitely go into to so much more

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And yeah, you happy for me to share your details if anyone wants to get in touch with you and that sort of stuff? Yeah, Yeah, cool. Yeah, definitely. Yeah, we'll put that in the show notes or something and hopefully find the kids some friends and get someone for you to understand you and your challenges as well. think that's super important. think a lot of the work I've seen is, the parents are getting left behind in all this. There's so much support, NDIS funding for kids.

But I guess if the parents aren't functioning, then what's the point? And always keen to try and look after the parents as much as we can. So. Well, that's it. If we fall, everything falls. Yeah, definitely. think there needs to be more emphasis on self-care and whatever that looks like. So well done on your painting, getting back to your paintings. Thank you. Awesome. Well, thanks very much for joining me. And yeah, we'll chat again soon.