Gosh – feeling emotional after watching the ITV documentary Girls with Autism on ITV Player just now.
‘How could I possibly be human?’ asks one of the girls, ‘when my own species won’t accept me.’
It’s devastating to hear a child talking like this; as a mother of a child with autism, the main thing I want is for my son to be accepted, to have friends and meaningful relationships. It’s acceptable now for him as a five year old to talk in a robot’s voice and to chew his sleeves, but what about when he gets into year seven? I worry about what the future may hold.
Girls with Autism follows life for pupils at Limpsfield Grange in Surrey, the only state school of its kind in the UK. We met Katie, who has Asperger’s Syndrome and is obsessed with boys, and Beth who had been educated in mainstream school until her anxiety had made her suicidal.
One girl really struck a chord with me though – Abi, who did not speak at all at school, but communicated verbally at home. Abi’s mum, Sarah, had just been diagnosed with breast cancer; Abi laughed and said, ‘You may die.’
I have Crohn’s disease and when I get sick my son laughs and hits me and says, ‘Do more sick, Mum.’ However, I can’t imagine what Abi’s mum was feeling at that point; her eyes filled with tears, ‘They don’t understand it. You have to just accept them the way they are,’ she said. ‘You have to accept an autistic child. I think a lot of people who didn’t understand autism would be angry with what she sometimes says, you know. I accept it and I love her no matter what.’ Such a courageous woman and a fantastic mum!
Whatever views you may have on the whole mainstream vs. special education debate – and I still don’t know quite what mine are – it is shocking that all the girls were weekly boarders; in some cases they were hundreds of miles away from home. What a difficult decision for a parent to have to make. For many children with autism, coping with a new smell or a new noise can be traumatic, so to go to a new school, with strangers, away from your home and family would be monumental. There simply aren’t the special school places locally for most people and the choice is taken away. So many children I meet are struggling in mainstream schools and some have been excluded or are being home-schooled by their parents. A lot of it comes down to funding; I don’t know what the answer is.
It was also interesting hear more about Pathological Demand Avoidance, (PDA) in the programme as it is still a condition that lots of people still know very little about. After doing extensive research of my own, when I asked some of the professionals working with my son about PDA, I was shocked to find that some of them did not even know what it was.
I have heard mixed reactions to the programme but it is good to see ITV raising awareness of autism and giving some insight into the challenges faced by children and families every day. I haven’t watched television for three almost four years, (apart from CBBs), but I shall definitely be tuning in next week. If it leads to better understanding of our children I think it can only be a good thing.