"An awful experience and one I hope I never have to repeat"

My 5 year old non verbal autistic son took unwell on an evening recently. He was vomiting, had a high temperature and was extremely lethargic to the point I was struggling to wake him. I phoned dalriada as I noticed a rash and mottled skin on his body. They rang back almost immediately and by that time I had made the decision to take him to A and E as his temperature was continuing to rise and he was practically unresponsive. The nurse on the phone agreed and advised me to phone the ambulance on route if need be. Thankfully, I didn’t need to. 

Upon arrival to A & E I checked in at reception whilst my husband carried my son into the waiting area. We waited to be triaged and were sent to the paediatric waiting area. By this stage, my son had started to come round from his lethargy and was becoming quite distressed from the new surroundings and possibly his pain.

I have to give credit to a really wonderful nurse who gave him anti sickness medication and asked us was he very sore considering how distressed he was. I explained to her in front of a full waiting area that he was autistic and non verbal and was unable to communicate his needs or pain levels. They were so lovely in that they organised a side room for us to take him and turn down the lights, this was the first time he settled and stopped crying. It meant so much to us and obviously to him. I find the fact that this nurse was the third person I had to tell that he was autistic and non verbal shocking, surely this information should be passed on so we as parents don’t have to to continually repeat our sons information to every medical professional we meet? It is distressing in an already difficult situation. 

We waited in this room with absolutely no communication from anyone for several hours. Approximately 4 hours into our visit I decided that we were going to take him home, his skin had returned to a normal colour, I felt his temperature had came down, he had stopped being sick and he was alert. I also have a 2 week old baby at home who I felt I needed to return to if my son was making a recovery. 

I went to a nearby station where I was met by a staff member on a computer. I explained that we were going to go home as my son was struggling to cope now that he was coming round. They said they were on their way to us. They arrived within 5 minutes and immediately started to question my son on his symptoms. I explained to them that he was autistic, non verbal and had severe learning difficulties so he would be unable to respond to the questions or communicate with them. This was now the 4th person I had to explain this to. They continued to ask him questions on repeat even though I continually reminded them that he would not be able to respond. It was extremely upsetting for us as parents as we were not listened to.

They decided that they thought it was a bug of some description. This was based on simply observing him and not completing any examinations apart from taking his temperature. I asked the doctor would they mind checking his ears and throat seeing as we were there and obviously something was causing this very high temperature. Yet again, they asked my son to open his mouth and say ‘ahh.’ I once again explained that he would not be able to do this so they said no problem his throat is fine. The could not have possibly known this. At this stage, I felt so upset that I literally wanted to run out the door. I could not wait to get my son home and away from this place. 

As an SEN mother, I do not make the decision to take my child to an A&E lightly knowing the distress and upset this might potentially cause. I feel we were failed by the A&E staff, there was simply no empathy or understanding of his needs or of Autism (apart from the nurse.) I think it is indicative of the lack of Autism understanding. It felt like there was absolutely no understanding towards our son. An awful experience and one I hope I never have to repeat.