A new service from the National Autistic Society offers training and support in helping parents of children with autistic spectrum disorders. Faced with the day-to-day problems of living with an autistic child, many parents have neither the time nor emotional energy to take on the LEA and master the intricacies of SEN Law.

With new legislation and the new Code of Practice coming into force next year, teachers who train as Advocacy for Education volunteers will be able to offer parents more support.

Alex Stanyer has taught children with special needs for 20 years and is now setting up specialist pre-school provision for children with autistic spectrum disorders and other complex communication difficulties. She says: “Parents should be their children’s own advocates, but they have to struggle.”

Alex Stayner has just trained as an Advocacy for Education volunteer with the NAS. Its programme of distance learning and weekend training courses covers autistic spectrum disorders, SEN law, and telephone advice-giving. Parents may need help in obtaining more support at school or changing schools, asking for statutory assessment or challenging a proposed or amended statement. More than 1,000 families have been helped in the first year and demand is growing. The service is supported by Clifford Chance (Solicitors) and sponsored by Lloyds TSB and Haberdashers’ Eleemosynary Charity.

Many volunteers staffing the Advocacy for Education Service and its follow-on Tribunal Support Service are parents of children with autism. They have had to battle their own way through the process of obtaining diagnoses and appropriate educational support for their children and want to help others in the same situation. Parent volunteer Rachel Riding says: “I am a trained lawyer and I know how difficult it was for me.” Many parents must give up, defeated by the complexity of the system.

Freya Gregory teaches autistic children with severe learning difficulties. “When they reach secondary-school age, many of these children need residential provision, but it takes some parents two years to get the right school.”

Mark Souter has legal qualifications and 12 years’ experience teaching autistic children, so he is well equipped to support parents through the tribunal process, which he sees as the only chance for parents to have their children’s needs assessed objectively. “LEAs hold all the cards and make all the decisions,” he says .

Legal advice is only available to people on low incomes who qualify for legal aid or those who are rich enough to pay lawyers’ fees. Parents often have to represent themselves and the support of trained volunteers can give them the confidence to do this.

Miriam Taylor is a teacher whose own son has Asperger’s syndrome. He was not diagnosed until he was 21 and she says his experience of mainstream school without appropriate support was horrendous. “No family should have to go through what we went through” she says. Like all the other NAS volunteers, she is trying to ensure they do not have to.

To find out more about training as a volunteer, contact Angie Lee-Foster, tel: 020 79033763. Advocacy for Education Service, tel: 0800 3588667, Tribunal Support, tel: 0800 3588668. NAS general helpline: 0870 6008585.

* Families of Autistic Children Embrace (FACE) is a voluntary support group offering advice and information for individuals and families in west Essex and surrounding areas. To join or find out more, contact FACE, 20 Ford End, Woodford Green, Essex IG8 0EG. Tel: 020 8504 7407.