I was hesitant to come to talk on a subject which I now know a great deal about: my son, Danny, who is 10 years old and autistic. The reason I was hesitant is not because I am worried about speaking in front of you lot; it's because I'm speaking in front of Danny's mum, who knows even more about Danny than I do.
Danny's condition is such that his mother's expertise goes way beyond what one would normally expect from a mum. In the past month Danny has been seen by a paediatric gastroenterologist, an eye specialist, a speech and language therapist, an occupational therapist, he's received an updated Statement of Special Educational needs from the LEA (with reports from two educational psychologists), he attends a special school with the input of a behaviour analyst, and in all he has a team of eight teaching professionals working with him at school and at home.
What has shocked me most is the inescapable sense that many of the professionals that parents have to deal with are regarded as the enemy, and that if parents are to get anywhere, the enemy has to be defeated. I don't believe that these people are bad, so what is going on here? The answer is that they have been forced, by circumstances beyond their control, to turn into gatekeepers: gatekeepers who have always to be thinking of how little they can get away with providing, rather than how much the child needs.
If there was adequate funding in the system, this wouldn't be happening. No parent is going to fight to access speech therapy just for the hell of it. We need speech therapy because we want our children to speak - to say their own name, or to ask for the toilet, not because we want our kids to go to Rada. Professionals become gatekeepers because there isn't enough to go round, not because parents are demanding too much.
Parents of children like my son really don't need enemies, believe me. We need all the friends we can get.Reuse content