Our Experience Piloting a New Autism Assessment Style: What It Looked Like and How It Felt
Billie was officially placed on the pathway in October 2022, when she was just 2 years and 3 months old. Between me, her health visitor, and a few other professionals, we noticed pretty early on that she had some sensory sensitivities and was a bit behind on her milestones. Looking back now, I can see she was already showing stimming behaviours—like hand flapping and rocking—but at the time, I didn’t really know what it all meant.
Since Billie was placed on the pathway, we’ve seen a Speech and Language Therapist, a Physiotherapist, and Occupational Health. I’ve also been on so many courses to try and better understand how to support her—because let’s be real, parenting doesn’t come with a manual, and parenting a child with Autism and a PDA profile takes the whole “I have no idea what I’m doing” feeling to a whole new level.
It was exactly 31 months after we were first referred that we finally had Billie’s assessment. At the time, we were told the wait was around 28 to 30 months, so it was pretty much in line with that. It turned out we were part of a pilot program trailing a new way of assessing children on the pathway. So I wanted to share our experience, just to give you a bit of insight into what it looked like for us—especially if you’re anything like me and have been down the Google rabbit hole trying to figure out what to expect!
The appointment letter explained that we were part of a pilot, testing out a new, more child-friendly and efficient way of doing the assessment. Me and Billie were invited to a joint appointment with her Paediatrician and a Child Psychologist. They’d be observing how Billie responded during the session—both with me and the clinicians—and would also be asking me more about what Billie’s like day-to-day. The letter mentioned they’d be contacting her school and any other professionals involved in her care to get a fuller picture too.
On the day of the appointment, we got to the hospital about 15 minutes early to give Billie a bit of time to settle in, ask questions, and for the nurses to check her height and weight. The appointment ended up running a few minutes late, but that was totally fine—Billie was more than happy playing in the waiting room. When it was time to go in, both her doctor and psychologist came to meet us there, and we made our way to the assessment room—well, I walked… Billie insisted on crawling! Her doctor was brilliant—he even cheered her on, which made her giggle. From what I understand, the assessment actually started right there in the waiting room. They were already observing how she transitioned from playtime to the appointment, along with a few other things.
Once we got into the room, Billie really took the lead on how things went. There were toys laid out on the bed and floor, and a few chairs dotted around. She checked with me first to see if she was allowed to play, and once I gave her the nod, she was off—completely in her element. For about 50 minutes, they gently asked her a few simple questions about school, like “What school do you go to?” and “Who’s your teacher?” but mostly, they just followed her lead.
At one point, she got into full-on pretend play, turning the session into a game of doctors and patients—apparently, she had a broken leg haha! They also asked me a few questions about Billie—mainly what my biggest concerns were and what I see as her strengths. Towards the end of the observation, I was given the chance to share anything I felt I hadn’t already mentioned. I’d brought along some notes to help jog my memory, just to make sure I gave them as full a picture of Billie as possible. After that, we were asked to head back to the waiting room while they had a chat. I already knew from the letter we’d received before the appointment that there were three possible outcomes: either Billie would be given a diagnosis, they’d decide she didn’t meet the criteria for Autism, or we’d be asked to come back at a later date for further assessment.
After a short wait, we were called back into the room—but by that point, Billie had had enough. She crawled under a chair to hide, but honestly, the staff were amazing. They met her exactly where she was at and still made the effort to speak to both of us. As soon as we sat down, they shared the outcome—which was such a relief. They told me that Billie did meet the criteria for an autism diagnosis. I was then given some time to ask questions, and they shared a few helpful resources along with what the next steps would be. For us, that just meant receiving a copy of her report in the post, and continuing as we were with the other services already involved.
After we left, me and Billie headed to her favourite soft play. While we were there, we chatted a little about the appointment and what the doctor had said—just casually, giving her the chance to ask any questions if she wanted to. Since then, I’ve heard she’s been sharing bits with her friends at school and even trying to answer their questions—which, if you ask me, is just the cutest thing!
Looking back, the whole appointment felt calm, supportive, and centred around Billie’s needs—which made such a difference. The team were kind, patient, and really took the time to understand not just Billie, but our journey as a family. I know every experience is different, but I hope by sharing ours, it helps take away a bit of the unknown for anyone else waiting for their child’s assessment. It can feel overwhelming at times, but having kind professionals and knowing what to expect can make it that little bit easier. You’re not alone—and you’re doing better than you think.
