I love a good, positive story and yesterday I had cause for celebration.
Taking my son for a check-up at the Royal Cornwall Hospital we experienced – probably for the first time ever – healthcare that demonstrated real respect for how my autistic son experiences the world. That experience has left me hopeful that, with more autism advocates in the world, we can really help shape our society to better reflect the needs of our wonderfully neurodiverse companions.
My day kicked off with a call from my GP late the previous evening to say that I needed to take my happy, lively son for a hospital check-up. He’d been experiencing pain in his leg, which I’d put down to hypermobility and to be honest, I wasn’t overly worried. Quite rightly my GP urged me to get it checked with some X-rays and blood tests to rule out any more serious underlying cause.
Now, even the mention of a bath or teeth cleaning episode in our house is usually the cause of a big meltdown. Visits to the small GP surgery in our neighbouring village can entail a good hour or so of calming to get him out of the car. My boy has sensory processing issues including sensitivity to even the slightest noise – and so what I take for granted can feel simply overwhelming to him. So, approaching this trip to a major hospital with a great deal of trepidation, I did what I needed to do. I stayed calm and composed, but deep down I wondered how on earth we would cope. Would he actually be able to have the blood tests done that day? How would he manage having been at home for so long during lockdown where social communication has been less of a challenge for us? Would I even be able to get him into the hospital without extra help?
The truth is, I needn’t have worried so much. The paediatrics team at the Royal Cornwall Hospital in Truro were utterly superb, supporting us through a difficult experience. They did this, not just with understanding, but with real respect for the way my son experiences the world. Support staff specialising in autism guided us through the day and made sure that each and every member of the team dealing with him knew his likes and dislikes and a ‘play and stay’ nurse worked with him as we had the blood taken. We could not have asked for better support. It wasn’t simply the support – it was a true sense that the team wasn’t merely accommodating someone with autism, but that they were genuinely guided and learning from him how best to make the experience as easy as possible for both of us.
So what did we both learn? That actually we can cope with a lot more than we think if we have the right kind of support and care in difficult situations – it helped me to stay calm and in turn, kept him calm.
The second thing that we learned was that he really, really doesn’t like plasters – and not because of the way they feel, but because ‘they smell funny’! It might sound obvious that a child who experiences sensory processing disorder might experience this, but actually, I did not even think to talk to him about plasters – it’s always the little details you’ll forget that can easily derail things.
Thirdly, I realised that my experience of supporting my son is invaluable and I need not question whether I’m ‘fussing’. As parents or carers of autistic people, all too often it is easy to think we’re being overprotective or ‘fussy’. We worry about what others will think as we push to have adaptations made. When we first entered the hospital, we were given a quiet side room to sit in. Unfortunately, renovation work outside meant it wasn’t quiet at all and so my first interaction with the team was to say we needed another space in that busy, paediatrics ward. As a parent of a child with autism our sensitivity about asking for what we need becomes less important. Our instincts about the people we’re caring for are usually not overprotective – they’re based on years of caring and listening out for what they need.
It transpired after what was a long day, there were no serious or worrying test results. But even with that wonderful end result, the experience itself could have, if handled badly, have led to a lifetime aversion to hospitals and tests for my son.
So finally, here’s a really big cheer to the amazing staff at Royal Cornwall – for making sure that this did not happen, for demonstrating just what ‘excellent’ looks like. I left feeling inspired and hopeful that a world that meets the needs of neurodiverse people is well within our reach!