01:14, December 31 179 0 theguardian.com

2019-12-31 01:14:04
Parents' three-year battle to win support for their autistic son

Like many nine-year-olds, Gyan Pansar lists riding his scooter, swimming and playing football among his favourite things to do. He is cheerful and inquisitive, and loves to be physically active.

But it took three years of extreme will and determination for his parents to help Gyan, who is severely autistic, get to this stage. “Previously we couldn’t take him into any social situation because he’d just cry and flop on the floor. He was not a happy child,” said his mum, Anoop Pansar, 37, in the family’s living room in the West Midlands.

Although Gyan had a learning assistant at his mainstream primary school between 2013 and 2016, the family soon learned she had only undertaken an hour’s worth of autism training. “He was out of the classroom from nine until half three – there was no education. If he screamed or if he threw tantrums, he’d be taken outdoors. He developed so many negative behaviours through those three years,” said Anoop.

As an alternative, Walsall council offered the IT consultant and her husband, Gurdit, a placement for Gyan at a special education school an hour and a half away but, convinced he should remain close to home in a mainstream school with adequate support, they launched a legal battle.

While jointly working up to 120 hours a week to supplement the expense, they hired a solicitor and an educational psychologist, and paid for a report from an occupational therapist. They also employed a consultant in applied behaviour analysis (ABA), a therapy designed to increase communication, improve social and academic skills and decrease inappropriate behaviours.

A video that shows clips of Gyan during his initial ABA sessions, which the family had planned to play during the tribunal in 2016, is testament to his development during the therapy. But it still was difficult to convince the council of its worth.

At a mediation meeting in February, six months before the hearing, Anoop describes their interaction with the council as “not like a normal discussion, it was intimidation”.

“They said they were providing us enough,” she added. But with mounting pressure from the evidence, the council budged just two days before the tribunal was set to take place, by which point the couple had spent £65,000 and remortgaged their house.

Gyan’s education, health and care plan (EHCP), which was implemented last year, specified ABA among his needs. He now has a learning assistant who is trained in the therapy. Evie Smith teaches Gyan at home as well as taking him to accessible classes at school, such as PE and music, so he can spend time with other children.

She also attends extracurricular activities with him – including a rangers club at the school – to bolster his social skills. “I think he’s much more confident since I started. At first, he was hand-biting and stressed to be in school to begin with but now he’s excited to go,” said Smith.

After the sacrifice the Pansars have made – including deciding not to have another child so they could focus on supporting Gyan – the council’s concession has lifted a heavy emotional and financial burden from their shoulders.

“For three years we were crying every day. It’s integral he has support from people who are qualified to offer it – it took me years to learn about the condition because it’s so complex,” said Anoop. “We’re hoping that we will be able to make him independent one day so he’s not dependent on the system for the rest of his life.”

Each year, the EHCP will be reviewed, allowing Walsall to withdraw any support they deem unnecessary. But the Pansars are prepared to fight.

“What happened for all of those years is wrong, I don’t have any doubt in saying that. There are dark days as well,” said Anoop. “There has been positivity now because we’ve got this plan in place.”

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