"Winter vaccines for an autistic child"

My young son is autistic. He was unable to cope with getting his flu vaccine at school so I arranged to take him myself.

I called my GP who directed me to my health visitor which gave me a website which gave me a list of times and places. When we arrived I was told we needed an appointment and given a number to phone so we left.

I phoned and managed to book an appointment for myself and my son. The operator confirmed this was for both his flu vaccine and primary COVID vaccine. She then provided me another number to arrange the flu vaccine for my daughter. The flu vaccine sessions for her were taking place at the same location and date of my son's appointment.

We arrived and booked my daughter in and asked if my son could be seen for his appointment at the same time, as he doesn't cope well with queuing. When this was refused we asked if he could just get his flu vaccine now and we'd come back for the COVID jag. Again they said no, we would need to return in an hour for his appointment, which we did.

I arrived 10 minutes early as requested but was not allowed in until 5 minutes past the appointment time. At this point my son was unsettled but coping. I booked him in and confirmed the vaccines he was getting then joined another queue. The longer we stood the more nervous and overwhelmed he became but we were managing as we had put strategies in place to comfort him. 

When we finally sat down with the nurse we were told it was a COVID only clinic and he could not get his flu vaccine. I explained that I had confirmed the vaccines he was getting 3 times, once on the phone and twice with the person who booked us in that morning. I also explained we had asked to get his flu vaccine at the earlier clinic and had been refused and told to come back in an hour. They spoke to their supervisor who said it could not be done. I explained again that he was autistic and there was no way I would be able to get him to do this again. They went away again and their supervisor agreed to allow us to get both vaccines and directed us to a booth. We were there for at least another 30 minutes attempting to get him to accept the vaccines.

These are the points I would like to highlight about this experience:

1. It took a long time to arrange these appointments for the 3 of us, after going back and forward from one department to get misleading information online, to phoning back on the Monday to speak to someone  listening to multiple long recorded messages to ultimately be redirected back to a website.

2. I appear to have been given wrong information several times, online, on the phone and in the vaccination centre.

3. Since my son is autistic with social communication, emotional regulation and sensory issues as well as a potential demand avoidant profile I knew this would be difficult and spent a long time preparing both my son and my family for the inevitable trauma. We elected to get him vaccinated to protect him as well as others but we did not take it lightly as we were well aware he would be upset and this would be very stressful and upsetting for us as his parents as well.

4. At no point was I asked if we needed any extra assistance or reasonable adjustments despite stating he was autistic several times to multiple members of staff and wearing our sunflower lanyard. We were in a privacy booth only to separate us from other patients due to him receiving the live vaccine, rather than from any consideration for him.

5. The amount of time I had to queue with his was ridiculous considering I was asked to be there 10 minutes early. Due to his stress levels he insisted I carry him so he could hug me the whole time and would not let go. I stood like this with an upset child for 45 minutes which was physically difficult for me.

7. The facility is large and intimidating as well as echoey and this caused him additional sensory distress.

8. When I began to get upset I felt very judged, as if I was being an unreasonably demanding or entitled person. I was not listened to and was interrupted when I attempted to express my frustration. There was no apology for the misinformation I was given and it felt as though they considered they they were doing me a huge favour.

9. It was very clear that the staff we dealt with had little to no experience of dealing with autism. They caused him additional distress during his full blown meltdown by constantly speaking to him and repeating his name.

10. When we sat down the staff sat back and left me to do everything. They made no suggestion as to how best to go about it, even when it was clear I was struggling and had to call my husband over, who was waiting outside with my daughter, as I was getting no support. This meant my daughter had to watch her big brother in distress which we had tried to avoid.

11. This was not only upsetting for me as his mum but also as an autistic adult. Neither he nor I were given any support and I felt judged by the staff. I feel very let down by the lack of care and consideration he received during this whole process. There was clearly no understanding of the difficulties we faced as a family or what he would go through as a result of his disability. I never expected this from a health care service.