The lessons Daniel can teach us all about bringing up an autistic child

It was only when Daniel turned one that I realised there was something wrong.

Friday, 22nd November 2013, 12:00 am
Updated Wednesday, 14th December 2016, 1:57 pm

It was only when Daniel turned one that I realised there was something wrong. His language had not developed. It took his mother some time to come to terms with this - but, as he grew into a toddler, it was clear that something was wrong.

The local authority, then East Sussex County Council (ESCC), did its best to put obstacles in our way. Daniel did learn to speak at about the age of four - although he would ask the same question incessantly and no answer would satisfy him. At his nursery school, he was a shy boy and rarely participated in activities.

It was clear that he would need extra resources in order to cope with what must have seemed like a hostile and frightening world. We decided that, in order to access extra help, we needed to obtain a statement of special needs. Suffice to say, ESCC opposed Daniel obtaining a statement and it was only on the day before the Education Appeals Tribunal (as it then was) met that the council conceded.

Daniel was lucky in that his parents were articulate members of the middle-class who refused to take "No" for an answer. I know from my work at Brighton Unemployed Centre that there are many parents with severely-disturbed children who have been fobbed off by the authorities.

Daniel was assessed on numerous occasions, but nothing ever seemed to come of it. One particular educational psychologist diagnosed Daniel as "elective", as if children who are autistic elect to behave in a certain way.

Responsibility for children shifted to Brighton - although the same council officers were in place.

Once again, we had to threaten legal action before the council gave way.

When Daniel was five, he went to a mainstream school at first, but transferred to St Anne's special school in Lewes - which East Sussex soon closed, selling off the land.

Daniel was, despite his many problems a delightful child, who loved watching his favourite videos, especially Spiderman. I can remember one of his drawings resembled Edward Munch's "The Scream".

Daniel went to a charity school in Seaford until he was 16. With puberty, he became extremely unsettled, attacking his mother and passers-by. He moved to my house full-time and it was with difficulty that I could control him. But we were determined to keep him out of care. For the first time, we had a very good educational psychiatrist who diagnosed Daniel as a very anxious boy and he prescribed Prozac - which we consider a miracle drug, because it calmed him down.

It was during this time that New Labour decided to introduce "choice" into care. Instead of carers taking Daniel out and having a base to go to if it was raining, we had individual payments, whereby we had to recruit and then employ carers with a fixed grant. The carers had no facilities or backup of their own; we terminated this experiment at an early stage

We were very fortunate that Daniel was able to attend Varndean Link College, which had just opened. He spent three very happy years there. When he was 19, we were in a desert. Being an adult, he transferred to adult social services and there was very little available.

After attempts to have Daniel cared for during the day, by a number of ill-equipped charities, we managed to persuade the Sussex Autistic Trust to open a centre in Brighton. At first, he was the only child there. But now it is used by many local children and the support they give, from exercise and walks to using a computer, is second to none. Our fear is that this will also become the target of council cuts.

We were always hesitant to take Daniel to town. It was essential to have a blue-badge parking permit so that we didn't have far to walk to the shops, as there was always a danger that Daniel would break away (he is fitter than either of his parents).

For six years, we were granted such a permit - but last year officers refused to renew the permit. One said that if Daniel ran in front of a bus, it wasn't because he wasn't mobile, but that he was too mobile!

In vain, I argued that walking has both a mental as well as a physical component. I wrote to every councillor in the Green Party, but they failed even to respond.

I was fortunate in possessing a law degree and a legal practice certificate, so I was confident that I was on good grounds in threatening the council with judicial review. Eventually, the council called it a day - having wasted £20,000 or more in legal costs.

What are the lessons that I would impart to a parent in a similar situation? Never give up.  Don't accept excuses such as "we have to make cuts". Remember: it is the future of your child that is at stake.