A Quest on behalf of autistic children
So tired was I by my son's physical protests against going to a local authority special school that I joined a wave of parent-led schemes for autistic children. We set up our own behaviour therapy educational provision: the Quest school.
Now my son eagerly attends Quest each morning. He responds to the one-to-one teaching, the consistent behaviour management and intense language programme. At last, he is being motivated to learn. Happier, calmer and with his sleepless nights more or less history, finally we can actually relax in our home.
But the struggle to find him the right education has switched to a struggle to convince the authorities that his place at Quest is in everyone's best interests. First, I lost out in the postcode lottery because my local authority - unlike others - is set against paying for places at this independent special school, which is run as a charitable trust.
Appeals to the Special Educational Needs and Disability Tribunal (Sendist) have been similarly unsuccessful. Although an impartial tool to resolve disputes between local education authorities and parents, the system was not on our side. The local authority used public funds for a barrister to cross-question me as though I were a criminal, while as a parent I was not allowed legal aid.
Our hearing descended into more of a scrap than an honest discussion of the needs of my child. I cannot believe that the local authority's barrister went so far as to tell me I could face six months in jail for sending my son to the small but successful Quest school, viewed positively by Ofsted.
But I do know the law isn't doing my child justice. There is a legal duty only to provide my son with an "appropriate", not the "most appropriate school", which his educational psychologist thinks is Quest. What my son needs is the very best education if he is to talk, behave appropriately and enjoy a future living in the community.
Yet the argument used against us of "unreasonable public expenditure" is the most frustrating. In reality, the independent school fees are cheaper than his package at the local authority maintained special school, which includes a taxi to transport him. But because the local authority school place is "pre-funded", a strange logic is applied whereby its special school is judged to cost nothing at all.
There is also no account in the cost equation of how much his education and care will cost in the future if he does not go to a school now that can teach him to talk and behave. A place at a residential school for autistic children can top pound;100,000 for one year alone.
So, on distorted cost grounds Sendist has ordered my son's return to his former school - one that Ofsted identified as having "serious weaknesses"
when my child was last there more than two years ago. Those who understand anything about autism will appreciate that forcing an unwelcome change of school on my son now will inevitably trigger regression.
I'm not on my own in thinking that this is crazy. Spurred by a report in my local paper of "Mum fights to keep autistic son out of school she says he hates", a group of parents with similar tales to tell have got together to ask our local authority, Kent, to support some fundamental changes.
TreeHouse, a charity set up by parents to campaign for better autism education in the UK, has launched a handbook on "constructive campaigning"
to help parents to hold local agencies to account and bring their experience to the table.
The Government's new white paper, Higher Standards: Better Schools for All: more choices for parents and pupils, appears to be a mandate for much of what we are battling for. But its rhetoric will need to be replaced with the right legislation if the reality is to change, particularly for children who need a special education.
Constructive campaigning for autism services: the PACE parents handbook by Armorer Watson is published by Jessica Kingsley Publishers. Sara Pennington is a freelance writer and a parent founder of the Quest school for autistic children in Kent