autismParents of autistic children and young people in East Sussex face long waits for a formal diagnosis – often several years – and receive only patchy provision in schools, a survey has found.

The report, The East Sussex Autism Survey, by parent-led autism support group iContact, which included responses from 100 parents of autistic children across the county, also found that there is little or no support in some of the greatest areas of need: social, emotional and general life skills.

The findings reflect poor experiences nationally, where 17% of autistic children have been suspended from school, only 15% of autistic adults are in full-time paid employment and there are high rates of suicide.

But the findings have already led to positive collaboration between the group and East Sussex County Council to effect change.

The report sets out a number of recommendations, and iContact shared an early draft with East Sussex County Council. Their response includes plans for new initiatives and a commitment to work with families to continue to improve provision.

Some of the parents’ comments in the report included: “I feel I wasn’t listened to for many years. My concerns dismissed and made to feel my son’s problems were "all in my head". Finally at age 9 (we’d been with the paediatric unit since he was 20 months old!!) and with a new consultant we’d never met before, we had a diagnosis.”

Also: “The class teacher knows even less than the Senco about high-functioning autism. The lack of understanding is beyond frustrating, my views are given little or no consideration, I feel talked at and dismissed.”

An iContact spokesperson said: “The report clearly shows anger among some parents whose experiences have been far from ideal. But there is now a growing sense of optimism and even excitement about what we can achieve. Some schools are already delivering excellent support for children and their parents. Others are doing their best but lack resources and training. We are heartened that County are keen to incorporate the experiences of children and parents in future decision making, and to provide schools with increased support.”

Councillor Ruth O’Keeffe MBE, added: “The East Sussex Autism Survey is a very well researched and carefully presented piece of evidence showing the state and nature of provision in East Sussex as told from the perspective of some of the least acknowledged experts in this field, those living day-to-day with children and young people with an autism spectrum condition, with everything that this means for family life. The struggles, aspirations, trials, triumphs and tragedies of real families are all there to be used for good.”