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As parents, we are always on tenterhooks. Nowadays I’m worrying about my sons disappearing into the London traffic on their push bikes, or heading off for a teenagers’ camping week. But when they are new-born we just want them to be OK, don’t we? When I was pregnant I was often asked, “Do you want a boy or a girl?” to which I always replied with feeling: “I really don’t mind as long as it’s a healthy baby.” Most of us are the same, and we mean it. Who cares if our baby is the brain of Britain or grows up to be an Olympian? All we want is for them to be ‘normal’.
So what do you do when your little one appears not to be developing at the same speed as your friends’ babies, or when those milestones are supposed to be achieved but they just don’t seem to be happening? I’m told time and time again by friends who have children who are different that they knew in their heart of hearts that ‘something was wrong’. My friend and very close neighbour in France, had a stunning little girl who smiled and smiled and was the most beautiful and happy baby in the world … but she just would not walk. Everyone kept telling my friend not to worry – easier said than done. For months and months she knew her lovely little girl was different, but still nothing was diagnosed. The reasons for her not walking were numerous: “she has two boisterous elder brothers and was frightened of being pushed about”; “she was a little tubby”; “she was a late starter”; “some children don’t walk till they are 2 years old” …and even to add insult to injury; “You are just an overprotective mother”. That really got her going!
Despite these soothing words from friends and medics, my friend always knew that something was not quite right. Eventually, after much heartache, this stunning little girl was diagnosed with Cerebral Palsy. She continues to delight everyone who meets her and is a joy to spend time with, but the ‘not knowing’ was terrible for those who loved her.
With Autism, this non-diagnosis can last even longer. This is partly because research is chronically underfunded (600,000 children are affected by the syndrome with just £3 million in Government spend invested in research), leaving a huge vacuum. Symptoms of this vacuum are that it takes an average of 3 years to diagnose a child with Autism and that 85% will not get the right treatment. The father who brought this to my attention told me that his son was diagnosed after 5 years, and that’s not uncommon. I’m sure you, as parents, can imagine the pain of that uncertainty or maybe some of you have been through it yourselves?
And diagnosis is just the beginning of a lifelong struggle.
Have any of you heard the fantastic translation of the The Reason I Jump, by Naoki Higashida on Radio 4? This amazing translation explains so much about how it feels to be Autistic, such as why sufferers cup their ears – due to the agony of sounds that the rest of us can’t hear. About why an Autistic child does not react when talked to – because time has no meaning to someone with Autism – a second can feel as long as a day. It’s an incredible insight into these people and I thoroughly recommend listening or buying the book, whether you know a child or adult with autism or not.
To learn more about autism or support ground-breaking research to change lives, go to Autistica: www.autistica.org.uk - a great charity which has a very important job to do. You can also find out more by reading Autistica’s latest report, One in a Hundred.
And finally, a thank you to Mark who is Autistic himself and emailed me a lovely letter after watching my interview with the Dragon, Peter Jones, last week. His email lead me to think a little more about Autism and how shocking the underfunding into both research and care is. Please help us to campaign and forward on this blog post.