Victoria’s Son’s Journey to Diagnosis

Episode 6 - Victoria's Son's Journey to Diagnosis -TAM

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.

Natalie Tealdi: So what would you say were the initial signs that made you consider seeking a diagnosis for your son?

Victoria Bennion: There were initial signs for my son that he was autistic, but they weren't signs that we recognized or anyone around us acknowledged for quite a few years.

They were doing lots of fun things they were having visitors in

they were doing performances, which he really struggled with, and it was this point that he started refusing to go into school.

We did have concerns about different aspects of his development from fairly young, but I didn't know what autism was and we were looking at them as very isolated elements. So speech was the first concern that we had. My son, I remember he, he had five words from quite young and then. That development side stopped.

I remember one of my friends saying it sounds like he's got a foreign accent, but there's a lot to be said of knowing what you're looking at. I remember we went to the group session and a lot of the children there were completely nonverbal, so we thought he was okay we just thought he needed speech therapy. We were put on a waiting list, and he was referred for group sessions for speech that were gonna lead up to when he went to school and when the letter came through it was one sound they were going to focus on, and I remember thinking he doesn't have most of the sounds and we've six weeks. Nobody's going to understand him when he starts school

Natalie Tealdi: can you describe the moments at preschool that raised your concerns about his development?

Victoria Bennion: I can, it's not as you would think though, the concerns raised early on were about his eating. I can't remember what I'd put in the lunchbox at the time, but he's had a really restricted diet. Ever since he was about 18 months, so he weaned pretty well. In fact, I thought that he had a wider selection of food at that time than his sister, who I guess many would describe as a picky eater.

When he hit around the 18 month mark, foods that he would eat really, really narrow to, just a few safe foods I remember he would've just turned three. I went to pick him up from preschool and.

We were lucky. My dad was able to help pay for some private speech therapy.

He had a weekly appointment for over a year at Total Children's Therapy and they were ever so good there. But running parallel. As I said, food had always been the massive struggle for him, and my husband particularly was worried about him not eating properly so we took him to see an occupational therapist there and looking back and reading the report now I can see that she was noticing quite a lot of signs of autism.

Natalie Tealdi: Can you describe the moments when you first had concerns about his development?

Natalie Tealdi: Did you raise this with staff at the preschool?

Victoria Bennion: No, I didn't raise those concerns because they weren't really concerns. Our concerns for my son were his speech this used to cause him distress, because he couldn't make himself understood. So our focus was that and his nutrition.

Natalie Tealdi: Were they supportive?

Natalie Tealdi: What were your expectations when your son started school?

Victoria Bennion: I remember feeling really stressed before he started school about his speech. We'd gone for a settling in session and there were two teachers in reception at the time. One I knew because my daughter had been taught by her three years ago, and the other was new to the school. It was the new teacher and I wanted to talk to her just to convey that he was having these speech difficulties and couldn't communicate with the other children particularly well. And I remember feeling a bit brushed off another mother suggested that I email the other teacher because at the time she was also the SENDCO of the school. And she was really good,

Natalie Tealdi: can you elaborate on how your son coped or didn't cope in the school environment during those early days?

I was comparing it to my daughter and I just thought he was. Maybe a little bit lazy with getting changed. He'd rather somebody else did it for him and she said, is it won't or is it can't. And I hadn't considered that at all until that point.

And I remember him telling me that he couldn't eat them because I put six in instead of five. And I remember discussing that with a reception teacher at the time, she hesitated and she said. But he was able to move past it, and because there was no meltdown, we didn't really register it as so much of a problem but it was definitely an indicator as to what was going on inside his head.

I'm not sure what reception was like when your son was at school, but there were lots of all class parties and behavior wise, he wouldn't join in. He was always very shy, so on top of no wanting to sit at the tables with the food, he also didn't want to join in the games. Would rather sit on my lap in the corner.

Natalie Tealdi: When did you start having formal discussions with the school about your son's needs? And what were those conversations like?

And I didn't, and nobody had actually fed that back to me. She said that he was unable to get up from his desk to get, a worksheet from the teacher. He wasn't joining in with the other children sitting on the carpet, and he looked very scared and very withdrawn, and she was concerned about him and she felt that he needed a referral to CAMHS to help manage his anxiety.

And. my knowledge of autism was negligible, really, so I agreed not to have him referred to the core diagnostic pathway. And certainly as part of our journey when I look back, that was a big regret because of how long the waiting lists are.

So he was initially referred to cams, the GP agreed, and she did that referral, and we didn't hear from CAMHS from months and months and months.

Natalie Tealdi: At what point did you start becoming aware of autism and its characteristics?

My son's three years older, so anyway, I remember that mum bought the book, the Girl with the Curly Hair, with the idea of supporting you and your son, and I remember standing in the dining room and I picked it up and I just flicked through it. And this dawning realization hit me as I recognized my son in every page.

All these struggles that I'd seen as separate things were actually seeming to come under this one umbrella of autism.

Also because of the concerns with his eating at the time, the GP referred him to the dietician and we had the appointment in, it was around the September when he was in year four, and this doctor was so good when he heard that my son was on the core diagnostic pathway and he interacted with him for a few minutes,

. That was when I realized that all these things that he'd struggled with, they were not separate, isolated things.

Natalie Tealdi: How did you cope with the waiting period for the diagnosis? I. What were those months like for you and your family,

Victoria Bennion: So skipping back to the end of year three.

the lady was very good though. She said, I'm gonna find out what's happened and I'll call you back. And when she called me back, she said that she found out that CAMHS had referred my son to the core diagnostic pathway. So the good news from that point of view was that he'd been on the waiting list for a while. Since the previous November, but we just hadn't been aware.

Anyway, the head teacher offered for my son to come in for the period between break and lunchtime because he said he was missing his friends, but he was supposed to go into the classroom. Actually, he barely, it, barely managed that. The classroom environment was just no longer something that he could deal with, and his anxiety levels were very high.

His food restriction was even worse, so. Yeah, I called them a lot and eventually he got an appointment in with the clinical psychologist for the ADOS two assessment, which the clinical psychologist told me is usually the second appointment that they do.

Natalie Tealdi: And what kind of support did you receive, if any, during the waiting period? Did you feel adequately supported?

Victoria Bennion: The support I received at that time wasn't mainly from professionals.

It was from people that I knew, other parents who had already walked this path.

Around me who were giving me advice on strategies on how to support my son and I just continued to chase the pediatrician.

The school were patient, they were flexible with us they could see how much he was struggling too.

Natalie Tealdi: Did you attend a parenting course, and did you find it helpful?

Victoria Bennion: Oh yes. I had to attend the same parenting course that you did. It was an online one and it really didn't apply. It wasn't helpful at all, but I think it was a criteria that you had to do this before your child. could be assessed by the core diagnostic team.

and our contact was one of the facilitators on the Early Birds course, so she was giving us support during this time

Natalie Tealdi: and what did the assessment process look like for you?

Victoria Bennion: Because of the slightly odd route that we'd reached the pediatrician, so via the referral from CAMHS, the first appointment, as I mentioned, was the ADOS two assessment with a clinical psychologist that took place in the November, and then the next appointment that we had was in the march, and that was the developmental assessment.

Natalie Tealdi: can you describe the moment you received the diagnosis? How did you feel when it became official?

but much as you said, it's a bittersweet moment. We knew he needed that diagnosis. He needed it so that we could access the right support. But there's something that hits you about seeing it in black and white. It just takes a moment.

Victoria Bennion: I'd really encourage parents to seek out support early from other parents, local groups, online communities like Facebook groups, because the diagnosis process can be so hard, especially because so many children are in crisis by the time they even make it onto the long, long waiting lists. You know, it can take months, sometimes even years to get a formal diagnosis.

So I really feel that it's important to build a support network around you as soon as you can.

until next time. Take care.