"No autism awareness at specialist dental appointment made on account of autism -"

My child has an autism diagnosis, as do I. Nevertheless, I've worked in and around the NHS at a national level for many years. Before that, I worked in education, and had a particular (special) interest in autism/neurodiversity. We're not incapable, but have specific challenges. This is my personal experience based on that background.

My son was referred to the NHSFV specialist dentist service at St Ninians to access a longer, autism-friendly appointment. The school pre-visit by the dental nurse was first class, and really helpful. (I wish the word count was longer so I could expand on this!) She went over and above, even rescheduling when my son was late/absent from school on her planned visit. She also phoned me afterwards to debrief.

By contrast, my son's first visit to the service felt rushed. It felt like they had a massive script to get through in the time available. Due to the layout of the room, the dentist initially sat directly between my son and me, blocking my view so I couldn't easily engage with him as he sat on the dental chair. They said we must have been given an egg timer (we haven't, but weren't given the opportunity to ask). The mirror they gave us will probably be helpful. They didn't really have time to build a rapport with him and I felt like I had to interrupt to get a chance to say anything. They didn't let him know in advance when the tooth brushing task would finish (challenges in task switching being common for autistic people); didn't engage with him over him being unhappy and trying to make them keep the print outs. (He's to tick a sheet every time he brushes his teeth for the next 8 weeks. Given his executive function challenges and his lack of responsiveness to star charts, I'm not sure this will work, but there was no discussion).

There was the usual info about not eating snacks - but without the nuance available on the first patient questionnaire that explains that often all he eats at school is 1-2 freddos and/or packs of smoothie melts and a couple of innocent smoothies. His diet is awful, and I've often approached the paediatrician without luck about a nutritionist referral, but he genuinely won't eat otherwise. There was no chance for me to explain about this until we were walking out the door in the corridor. Anyone who looks at him can see he's skin and bone in a jumper, and with his sensory issues, he has previously cut even chocolate out for months at a time, so by this point I was worried he might misunderstand and believe that all snacks are bad and he shouldn't eat.

By the end, I was a bit discombobulated, but I'm philosophical about the level of autism awareness out there, know what it's like to be a pressured front line professional, and wouldn't have said anything in the hope they'd have a better grasp on him next time - if it hadn't been for what happened next.

By the end of the appointment, my son wouldn't stay in his seat and was showing some signs of dysregulation. As we were about to leave the waiting area, me with my hands full of my son's stuff, the receptionist knocked on something, possibly the reception window (which had been shuttered the entire 35 mins we had been waiting but was now open) to get my attention and said that I needed to make a repeat appointment before leaving. This was embarrassing - I was expected to know this was the process without being told (it's not with paediatrics etc).

The reception window is directly beside the exit, which is a secure door. I thought I was between my son and the exit button, but I'm autistic and my attention was split, or maybe someone actually buzzed him out. When I turned around my son was gone, the door closed, and nobody in reception had mentioned he was leaving or tried to stop him. They didn't seem bothered at all, just saying that he'd left. I had to drop my stuff and go out looking for him in a panic. I found him a minute or so later outside the building on the pavement beside the car park (round the corner and through a couple more doors). He had thankfully just got out of the place and realised he needed to stop. Eighteen months ago he wouldn't necessarily have done so. He likes to hide, doesn't always appreciate when this is inappropriate, and escaped the school building a couple of times when dysregulated. Again, all autism.

When I came back there was no concern or empathy apparent from the staff, who just gave me the appointment card as if nothing had happened. Apparently getting that appointment made then and there was more important than the safety of the child it was for. (What's the chances I'll be phoned up to reschedule this one, too?)

I helped support the national adverse events review programme in a previous role, and I would hope that NHS FV would look on this as an adverse event, or at least a near miss which could prevent something worse happening in future. But it just didn't feel like they cared. No small child should be allowed to wander off through a supposedly secure door and out the building without comment by staff while their mother's attention is diverted by the staff. But when the appointment was made with the service specifically BECAUSE OF the child's autism and their mother has also disclosed her own diagnosis, it's farcical. I don't think the service is autism-or trauma-informed, and feel really anxious at the thought of taking him back for what felt like pretty limited gain.