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

[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 continuing the conversation about one of the most important and emotional milestones in any autism journey, the path to diagnosis. As we shared in the last episode, every child's journey looks different and so does every diagnosis. So today, me, I, Victoria, am, opening up about my son [00:01:00] story, we're gonna talk about the early signs that were missed, the struggles that unfolded at school and the moment when the diagnosis finally came. No one gives you a handbook for this journey, but by sharing our experiences,, we hope to offer some reassurance, connection, and understanding.

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.

The point of realizing that he needed a referral to the core diagnostic pathway was when he was approaching at the end of year three, and basically all the wheels fell off. He could no longer cope. He'd obviously managed to get through until that point. The catalyst was actually the Queen's Jubilee, [00:02:00] so it was 2022, and the routine in at school began to change

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.

So we were concerned about his speech, but I remember at the two year check, although he wasn't saying much more than these five words we discussed, that [00:03:00] boys can be a bit slow and the health visitor referred us to to some kind of speech session in a group and. Whenever that by the time that took place, my son was speaking, you just couldn't understand what he was saying.

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

so [00:04:00] speech was. One of our main concerns from when he was very little, but the other really dominant difficulty that he had was with food

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.

I was called in to have a meeting with one of the members of staff, and it was about what , he [00:05:00] was eating, I was told that he had to eat certain things and there was no way we could get those things into his lunchbox. So food was really the focus for that's what we worried most about,

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.

I even remember filling in a questionnaire about autism, but at that point he was three years old and he [00:06:00] internalized a lot of his struggles and that form is something that you fill in. And I didn't answer the questions correctly. I remember going through and it was a lot of assumptions that I had to make about his understanding and things like that, and I assumed wrong. I realize that now.

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

Victoria Bennion: I feel looking back that there are moments that we ignored, because we didn't know what we were looking at, we went on holiday, we were in America, this was just before his second birthday. and we'd taken a lot of his toys with him and I remember he was lining up all the cars along the floor in the hotel room. and when it was time to leave to go out for the day. He did get upset. he didn't imaginatively play with toys at all. He had the letter and number magnets [00:07:00] that you stick on the fridge. He used to carry them in a jar everywhere, and his focus would be to group them by color, line them up, and we just thought he was ever such a clever little boy, which he is. But. There were signs there that we weren't seeing.

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?

Victoria Bennion: I think she was the deputy manager of the preschool Lucy. She was so lovely and so accommodating with my son. At the time he was eating spaghetti hoops. That was one of the only things he'd eat and she told us it was okay to bring in that and she would warm it up for him. So they were really accommodating and supportive with the speech [00:08:00] difficulties.

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?

Victoria Bennion: Sure. Outwardly, he seemed to be coping okay. I remember the first parent consultation and his [00:09:00] reception teacher did start flagging a few things. he was struggling with handwriting. He wasn't able to get changed for PE and was hiding The reception teacher said that she wanted him to be referred to occupational therapy for support with his motor skills because really because of the handwriting and because of the inability to get changed.

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.

There was a time when reception parents were invited in to watch the children singing a song. And there was a particularly loud line, and before the loud line came, he put his hands over his ears. Another thing that I remember is. He used to have raspberries in his lunchbox. I usually put five in, and one day I put six.[00:10:00]

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?

Victoria Bennion: He was under the speech therapist and occupational therapy [00:11:00] certainly until year two and at the end of year two, the occupational therapist went to observe my son in the classroom, and I remember it really well. She called me because she was so concerned and she asked me if I knew how much he was struggling at school.

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.

At that time, this had to go via the gp, and the GP wanted to do a referral to the core diagnostic pathway. I had absolutely no idea what that meant. And the occupational therapist told [00:12:00] me it was for neurological conditions, which she didn't believe my son had. And at the time, the school said they didn't think he needed this either.

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?

Victoria Bennion: started becoming aware of what autism actually was because of you and what you were going through with your son and how it had been. Suggested that that might be a possibility. All this was happening at the same time. And I do remember thinking we were probably the [00:13:00] most awkward family that the school had to deal with at the time because both our boys were there, but they were in different year groups.

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,

he spent the appointment talking to me about autism and he recommended some [00:14:00] books. It's clear he could see that. That was what was going on. My son was autistic. I went home and I bought the books on the reading list that he gave me, and one of them was Tony at Edward Asperger's syndrome. And there's a checklist right at the beginning and I read through it I remember saying to my husband, look at this. It's all there. Every single thing. And this social aspect I think had been one of the reasons why me and family had said, but surely he's not autistic. And I think it actually says in the list shyness at gatherings such as parties. And I thought he ticks that box.

. 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.

At that point he was in crisis. He was [00:15:00] unable to cope at school at all. My first point of call was CAMHS, where is he on this list? And I remember when I phoned and finally got through to somebody, she said, he's not on our list. And that was what I was pinning everything on. Some support from CAMHS

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.

I called the pediatricians fairly frequently to ask where he was on the list because we were all struggling by this point. , he had three weeks off school where I really wasn't sure what we were going to do, he was so distressed. I just didn't feel I could send him in anymore. And I really felt like there was nobody to ask. I wasn't really aware [00:16:00] of what happens if you don't attend school.

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.

Who we didn't know existed until we started struggling. One of my friends I'd worked [00:17:00] with, her daughter was autistic, and she said to me, you need to come along to a group. So she took me along to this group called a ASDivas and Dudes and. I received support from them, from friends

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.

We did do the Early Birds Course, which as I said before, like you, I found a godsend, but that wasn't until later. That wasn't until after my son [00:18:00] had his diagnosis. We were lucky though, the school had involved TADDS Outreach, which are a team in our area who support schools with their pupils who are autistic.

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.

That was two hours with me taking all the history. And then we just had one more appointment, and that was in the May of 2023 with the clinical psychologist and another pediatrician who gave my son the diagnosis [00:19:00] of autism. So all in all, it was 12 months from the time we realized that he was on the core diagnostic pathway to receiving the diagnosis,

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

Victoria Bennion: It was May, 2023 that my son received his diagnosis. He was approaching the end of year four and is in the middle school system. So we were battling on all fronts. It felt that time to try to get the appropriate provision set up for him from September. , so it was mainly relief

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.

Natalie Tealdi: And is there any advice that you would give to parents who are currently navigating the [00:20:00] diagnosis process for their children?

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.

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 [00:21:00] www theautismmums.com

until next time. Take care.