My son was first diagnosed with Asperger syndrome at the age of eight, after five long years of wondering why he was different, why he was not the same as his friends. His diagnosis came as a huge relief and I thought it would get us the help we so desperately needed. But, oh boy was I wrong, it was just the start of an even longer struggle!
I have fought a high court battle and an educational tribunal and spent over £60,000. I have had to sell my house and my car, nearly ruined my own health and many relationships in the process.
Misunderstanding of autism in a mainstream school
I begged for help from educational institutions to social services and lost all my dignity only to be turned away. I found the Disability Discrimination Act (1995) didn’t mean an awful lot: whenever my son raged in class the teachers always commented they were sorry but "had to protect all the other children". Whilst I understood their position, it left me with no other help to turn to and my son kept wondering what he had done so wrong.
We both felt very lost, depressed and confused and most of all let down.
My son was at least four years behind his peers, often sat outside the classroom and was even excluded from the playground. He was so anxious that he pulled his hair out and punched his arms. The school would not accept his condition and classed him as naughty and me as a bad parent, instead.
Making progress and finding a specialist school for my son
The good news is that after a two year educational battle which tore every last shred of us both, we won and he was awarded a placement in a special needs school that provides the specialist help he so desperately required.
He is now 11 and has been in the school for six months. The progress he made with the right input in this a short space of time has been amazing. Never before has he had the confidence to pick up a pen and write, and he is not afraid of getting his work wrong.
He is learning for the first time in his life and is greatly enjoying it. He no longer pulls out his hair and has so much confidence. He is in a school that understands him and he now has a great future ahead. He is no longer classed as "that naughty boy" but a child that is "good at art and woodwork", the boy that has a "great sense of humour", not "the odd boy".
Advice for other parents
My message would be to never give up fighting, there is light at the end of the tunnel and it is very, very much worth while. You will get there but unfortunately, it is a long and rocky road. I just wish there was more help out there for ASD parents, adults and children and really hope the government realises that having an autism spectrum disorder is hard enough, let alone fighting for basic needs.
What I can’t figure out is why the government does not invest in ASD early on as they will end up paying a lot more at a later stage. Failure to invest in good specialist education only means that individuals are forced to live off benefits and are much more likely to be a burden on the healthcare system when mental health issues arise as a consequence of the lack of adequate care and education.
Good luck to you all, keep on fighting it will be worth it in the end!
You can get impartial, confidential advise from our highly-trained Autism Helpline advisers.