Fiona Mylchreest reflects on what she’d really love for Mother’s Day next year during World Autism Awareness Month.
Mothering Sunday is one of those weird things that I don’t really approve of but it’s still rather nice. It’s horribly commercial, but I love the cards my children make at school and the soggy bunches of daffodils they fight for in church.
The timing of Easter this year meant that World Autism Awareness Week followed straight on from Mothering Sunday. This was in my mind as I looked at my wonderful card: a flower made of petals coloured in crayon, roughly cut out and stuck round a scribbled yellow circle, with a green pipe-cleaner for a stem. My gorgeous 17-year-old made it for me, and he was so proud. He is very autistic and so much more. He is gentle and funny with the deepest big laugh and capable of the purest joy at the simplest things. Sadly he needs incredible routine and security as he is also capable of terrifying meltdowns, and epileptic fits, brought on by stress. His first big fit was when the school bus took him to the wrong address. His second was when his ancient Teletubbies video wouldn’t work.
We try and try to manage and plan every situation. We have lists and back-up plans and people to call in emergencies. But sometimes things just go wrong, sometimes because I haven’t
understood what he needs, sometimes because volcanic ash clouds close airports. We can’t manage everything.
This year the campaign is Autism – Too Much Information (TMI) – which is so appropriate. Children and adults with autism hear things more loudly than we do, they see more details, more colours, than we do, they smell things more strongly, a million mixed scents. Their whole lives are information overload with a tired, stressed brain trying to process all that information, unable to prioritise it. There’s a good film about it on the NAS website.
Nobody knows what causes autism. There are lots of theories, some heavily publicised with very little evidence. We know there is a link with prematurity, so since my beautiful big boy was born at 27 weeks, it stands to reason that could be a factor. We know a little more about what causes epilepsy. Roughly speaking, your chances of having epilepsy increase by one quarter if you are born prematurely, and by another quarter if you have autism. So if you were born prematurely with autism, your chances of having epilepsy are, to abuse the statistics, 50:50. How terrifying is that?
So for autism and epilepsy and all the accompanying problems, from food fads to allergies, from communication issues to sensory overloads, the only common factor is prematurity. And what causes prematurity? We don’t know. Prematurity is the biggest cause of infant death and lifelong disability worldwide and we don’t know what causes it.
That’s why Borne has a role, a crucial role, in finding the causes of preterm birth and how to prevent it. Before we get to epilepsy research and special pillows so children don’t suffocate if they fit in their sleep, before we get to medication and blood tests, before anything, we need to know why babies are born too soon. Why mothering starts too soon.
That would be the best Mothers’ Day present ever, if mothering started at 40 weeks.