[00:00:00] Hello and welcome to the Autism Moms podcast. I'm Victoria. And I'm Natalie. We are two sisters raising autistic children who know the joy, the challenges, and the everyday moments. This is a supportive space for honest conversations, practical tips, shared strength and expert advice, whether you are celebrating a win.

Surviving a meltdown or just trying to make it through the day. We are right here with you. Join us as we share the ups, the downs, and everything in between parenting autistic children.

Victoria Bennion: In this episode of the Autism Mums Podcast, we are opening up about one of the biggest milestones in any autism journey. The path to diagnosis. The experiences with our children looked very different as they often do, and so did the diagnosis that our children received. No one gives you a roadmap for navigating this path, which is why we wanted to share our [00:01:00] experiences in the hope that it might offer.

Some idea of what this journey can look like. Although every child's path is different, knowing some of the steps, the challenges and the support options ahead can make it feel a little less overwhelming. Today we're gonna focus on Natalie's journey with her son. Right. To start things off, let's go back to the early signs, those first moments when you started to notice things at nursery that made you wonder if something more might be going on.

Natalie Tealdi: Looking back, there were quite a lot of signs, but at the time didn't really realize it till much later. But our son always struggled at nursery,

Victoria Bennion: What age was he when he was at nursery?

Natalie Tealdi: He was three, but we had Covid as well in the middle of it. So he missed a chunk, but then when he was there, he really struggled.

Victoria Bennion: Wasn't identified as having any additional needs at that point.

Natalie Tealdi: No he wasn't. I was told he was an alpha [00:02:00] male.

His speech wasn't great. He, was talking but he couldn't communicate as well as other children his age. . He didn't remember other people's names and things like that. So I remember he used to just run around chasing another boy, calling him a different name, which used to wind the other boy up.

But I think he was trying to make friends in his own way.

They used to go out for daily walks and he began refusing to do that by, um, lying on the ground. Um. So that was raised as a bit of an issue. We tried, um, cutting his hours down and this was sort of towards when he was starting to get towards starting school, say four years old by that point.

But he did also attend another setting. He was at nursery in one place, but he was also at a preschool, which was attached to the school. He was about to start at just for half a term before we moved house. I wanted him to get to know some other children before he started school and at that setting they were really good with him and he coped really quite [00:03:00] well.

So it was really hard to understand what the issues were because there he was fine.

Victoria Bennion: And so that brings us onto the next stage, your experience with the holiday club. And I know that this was a really significant moment for you when things started to feel concerning.

Natalie Tealdi: yes, I had to put him into a holiday club in the summer holidays before he started school because I was working three days a week.

So, and he did not cope well in that setting at all. He tried to run away several times and they experienced challenging behaviors with him.

I remember I'd be working and just be dreading my phone ringing because he was struggling so much. I was almost getting daily phone calls with them to come and pick him up or something would've happened, and I just used to feel really anxious.

I'd be working at home and just waiting for my phone to ring. And then when the phone call came, it was a bit of a panic because I was trying to work, and then I'd have to pick him up and bring him home and then try to explain that to my boss.[00:04:00]

It was just a really tricky time trying to support him, but also trying to keep my job.

One of the teachers there did say to me, well, I work with children who have special needs, and it's not that. Um, so I didn't really know what to think at that point, but it did lead me to emailing the senco of his school that he was about to start at, just to flag up that he was struggling in certain environments.

Victoria Bennion: So it was time to start school and that's often when even more challenges start to show up. Can you talk us through how those early school days went?

Natalie Tealdi: When he started school, it was very clear, very early on he was not coping. So I had this sort of, I didn't even realize I had this dream in my head that, I'd be going to the gates with all the other parents to collect him and watching come out with his friends and how lovely it'll be.

And I think I did that once or twice before he was given a [00:05:00] different exit to come out of. 'cause he would coping at the end of the day

Victoria Bennion: When you say he wasn't coping, what does that look like?

Natalie Tealdi: Collecting their bags, getting their coats, all that sort of hustle and bustle at either end of the day. That's something he still struggles with now is he can't really think about what he needs to take with him. We lead that part of the day

for

him. So I will carry his bag. I think it's just too much on top of everything else he's dealing with.

Victoria Bennion: Was he struggling in the classroom?

Natalie Tealdi: I remember going for some sort of information session and seeing him outside on his own. I. In the play area, they were keeping an eye on him, but that whole time I was sitting in this, this information session and he was just outside 'cause and he was outside most of the time, most days because he couldn't cope being in a classroom.

Victoria Bennion: You know, I think that's quite a common thing that happens when children aren't coping. They're often outside or they're put [00:06:00] into corridors. And to be fair to the schools, they just don't have the resources. It's very difficult to cope with this kind of situation when they've got 30 children that they're trying to teach. I guess. So is this the point you started having more formal conversations with the school? Can we talk about how the TAF meetings and early discussions with the Senco Unfolded.

Natalie Tealdi: That was way down the line. We had the table around the family meetings, TAF meetings, so. My husband and I went in and spoke with the SENDCO and his head teacher just to discuss the difficulties he was having and at the time , it was their thinking that he had some sort of emotional development delay and they said, you know, they were seeing this a lot with children around that time because of Covid.

So they, they hadn't been taught how to share and that. That kind of thing. So they thought perhaps he was just struggling with that, but they did raise that he might also have sensory difficulties.

They [00:07:00] suggested that. He should be referred for occupational therapy. They didn't think a full assessment was appropriate at that age. He was too young.

Victoria Bennion: Were you aware of what autism was at this point, or autism and A DHD? Um,

Natalie Tealdi: I wasn't really aware of what autism was too much, apart from we grow up with, um, our mum's friend's son was severely autistic.

For the occupational therapy, um, there were some assessments carried out within school. Behavioral assessments, sensory assessments. A specialist teacher was brought in to do observations on our son, and then I spoke to a gp. I think you had to get GP input. And this is what changed it.

I spoke to a GP for about 20 minutes on the phone, and luckily he had experience of autism. The GP thought that we needed a full assessment

Victoria Bennion: [00:08:00] Waiting for a diagnosis can be so tough emotionally, especially when the support feels limited at that time. Let's explore what those waiting months look like for you and for your family, both at home and at school.

What did the timeframe look like ?

Natalie Tealdi: At that point it was 18 months to two years. I think now it's more like three years. Um,

Victoria Bennion: I recently spoke to a gp. She said it was 18 months to four years, waiting for this time really feels like you're stuck in limbo when you're struggling every day, but you've got no formal support or diagnosis. And you were struggling. It wasn't just at school.

You were having a very hard time coping with his behaviors at home as well.

Were you given any support?

it

Natalie Tealdi: Was really, really hard and we had a newborn at the time as well, so there were lots of changes at home. We'd just moved house. And our son was not coping

Victoria Bennion: So that's a lot of change and noise from the baby

Natalie Tealdi: unexpected noises. Um, he didn't really understand her facial [00:09:00] expressions and things like that, so I think he felt very uncomfortable.

I mean, He was being sent home from school. He was suspended twice at the age of five. Um. I was on maternity leave from my job, but I kept delaying my return to my job because I couldn't see how I was gonna be able to do that job.

Support wise, we were sent on a parenting course.

Victoria Bennion: That's very standard.

Natalie Tealdi: It is very standard it felt like it was my fault

Victoria Bennion: Did you feel like your parenting was being criticized? It's like down to you that your child's behaving like this?

Natalie Tealdi: Yes,

but we did the course, um, and we tried some of the methods that were suggested, but they didn't work for, for our son.

Victoria Bennion: And I think that's because the parenting course, it's aimed at neurotypical children. It's not focused in the way that it would give you the help that you needed,

Natalie Tealdi: no. But we were given the support of a behavioral nurse who was absolutely amazing. I mean, I used to have regular telephone appointments with her

Victoria Bennion: Who gave you that support?

Natalie Tealdi: It came from the gp. Also she suggested [00:10:00] the Early Birds Course, which is run by the National Autistic Society, but you could only get onto that course if your child was diagnosed, with autism. So we. Managed to get a letter to say he was likely to be diagnosed, and then they let us onto the course which was really, really lucky.

Victoria Bennion: To date, the early birds facilitators are the most knowledgeable people that I've met when it comes to autism, and they're such wonderful support before, during, and after the course.

Natalie Tealdi: Yeah, definitely. I mean, that was the first time I'd heard of visual timetables was when I spoke to one of the facilitators from the course

Victoria Bennion: I remember they had a call with you, to offer you some support beforehand.

Natalie Tealdi: That's right. So I had a call and she spent about 40 minutes on the phone with me just giving me all these tips. And I just remember writing pages and pages of things, you know, 'cause you're just desperate at that point. You just want to try anything that would try [00:11:00] to help your child. So we did the course.

Um, things did escalate at home, uh, and. His diagnosis was, well, his assessment, sorry, things escalated at home at that point, and his assessment was then escalated. So we got seen a lot quicker than we would've normally done.

Victoria Bennion: Eventually you did get the diagnosis. Can you remember from the point of referral to the core diagnostic pathway to the time that you actually received the diagnosis or diagnoses, like how long that was?

Natalie Tealdi: I think it was 14 months.

Just after we finished the course actually.

Victoria Bennion: How many appointments did you have to get the diagnosis? Because I know this varies a lot.

Natalie Tealdi: And so we were referred to a pediatrician and we only had that one face-to-face appointment before we got the first diagnosis. So he was diagnosed with, autism first.

We had one initial appointment to get one diagnosis, and then we got the next one.

Victoria Bennion: How far apart do you remember roughly those appointments were

Natalie Tealdi: They were only about a month or two [00:12:00] apart. But the fact that we'd had the contact with the behavioral nurse, she had a stack of papers with evidence and the pediatrician had read all through that, and she said she could have diagnosed us without even seeing us.

Victoria Bennion: How did you feel when you got the diagnosis?

I'd love for you to share what that moment was like and what emotions came up when it finally became official.

Natalie Tealdi: It's a weird one, isn't it? Because it's something you really are just yearning to get because you're stuck in this place and you just need help and you need that piece of paper to open up the doors.

that you,

Victoria Bennion: To specialist schools,

yeah. Yeah. Specialist schools support.

That's what you're hoping

Natalie Tealdi: For

for. Some sort of ray of light,

Okay.

but then I felt, when I saw that in black and white, I did feel a bit like a sense of grief,

a sense of loss, because

you don't want that for your child. You don't want them to have a difficult path,

Victoria Bennion: When you have it in writing, it makes it real.

Natalie Tealdi: Yeah,

Victoria Bennion: I think that's [00:13:00] it.

Natalie Tealdi: , and you realize you're not really in the same place as everybody else, but that's okay

Victoria Bennion: Yes,

Natalie Tealdi: because things do get better.

Victoria Bennion: For anybody whose child is on the pathway, perhaps either waiting for these appointments or waiting to get a letter confirming the diagnosis, I feel it's really important to just say, you are likely to feel some grief when it's finally confirmed. And then some of it's re-imagining what you thought life was going to be like for your child.

So as you said, Nat, you imagined picking up from school and everything being lovely. And then you have to reconcile that with this new reality, what that looks like. And that is okay, but you do have to give yourself a little bit of grace to process that.

Natalie Tealdi: Yeah, definitely,

Victoria Bennion: And finally, let's talk a little bit about what support came after the diagnosis and what you wish you had known at the time. So when you had your diagnosis, when you received it, what support were you offered, if any?

Natalie Tealdi: so because of the A [00:14:00] DHD part, there was medication involved, so subsequent appointments were needed , I. For him. It was every couple of months we were seen for about six months to a year. Now they're much less frequent, more like every six months to a year.

Victoria Bennion: Ah, okay. When my son received his autism diagnosis, that was it in terms of support from the NHS. So we received the letter confirming the diagnosis along with a resources pack, that's signpost you to place as you can go for further help. I mean, luckily I was prepared for that because I'd been warned by a friend, but if I hadn't, it could have felt incredibly isolating and overwhelming because you just feel like you're being left to figure it all out on your own.

And this is definitely something I think that we should talk about more in a future episode. So thank you for sharing your journey today, Nat. It's been really powerful to hear, and I'm sure emotional for you to share. But in the next episode, we'll turn the tables and I'll be sharing our different path to diagnosis.

If you are [00:15:00] somewhere along this journey yourself, please know that you're not alone. We hope that by opening up about our experiences, you'll feel more supported, understood, and prepared for whatever lies ahead.

Thanks for joining us today on the Autism Mums Podcast. We hope you have found a little support, a little solidarity, and a reminder that you are not in this alone. If you enjoyed the episode, we'd love it if you'd follow the show and share it with another parent or carer who might need to hear it. And if you've got a story or a moment you'd like to share, we'd love to hear from you at www theautismmums.com

until next time. Take care.