Ontario’s Auditor General will launch an unprecedented review of children’s autism services at a time when huge public interest has focused attention on services for a growing number of children with the neurodevelopmental disorder.

News of the audit, which will examine autism programsfunded by the Ministry of Children and Youth Services, comes after the government struck a blue-ribbon panel of experts in December to provide advice on autism policies and programs. It also follows Ontario Ombudsman André Marin’s decision to investigate the dire lack of services for adults at risk of ending up in homeless shelters and jails because there is no one to care for them.

Autism rates have climbed steadily to an estimated one in 88 children, who face a range of problems with communication, social interaction and behaviour. The disorder has no cure and lasts a lifetime.

In the past decade, the children’s ministry has tripled spending on autism to $186 million, including $116 million for intensive behavioural intervention (IBI), the only comprehensive treatment funded by the province.

But the Star’s Autism Project late last year found parents in despair, children languishing on wait lists for up to four years, and families overwhelmed by paperwork and bureaucracy. Many remortgage homes or borrow from relatives to pay for private therapy, which can cost as much as $60,000 a year or more.

“It’s becoming an increasing expenditure, it’s in the public interest and we haven’t really touched on the whole issue in a good seven or eight years,” Auditor General Jim McCarter said in an interview. “We felt it was time to have a look at it.”

The auditor has referred to those services in past annual reports, but only within the context of more expansive audits looking at children’s mental health services or special education.

This is the first extensive “value for money” financial review of the sector.

“This would be a more focused audit than we’ve done in the past, strictly focusing on autism as a separate issue,” said McCarter.

Recommendations will be included in his 2013 annual report delivered in early December. Typically, audited programs are also subject to follow-up reviews two years later. Other ministries including health, education, community and social services also serve people with autism, but those ministries aren’t part of the audit.

The Star series documented a severe shortage of services and supports for people of all ages on the autism spectrum. But intervention in the early years is considered key because young brains are more malleable. Research has shown treatment has the most impact between ages 2 and 7.

Yet childrenwait between one and four years, depending where they live, for intensive behavioural intervention covered by the province, the Star found. It means too many don’t get treatment when it is most effective.

In Toronto, it can take two years before an eligible child gets a spot. The average starting age is 5.5 years. In Durham, York and Simcoe, children wait an average of four years and typically begin therapy at age 7.6.

The “diagnostic odyssey” — from the time a parent raises concerns with their physician until an autism diagnosis is made — can also take years because of the shortage of experts trained to identify the disorder, which ranges in severity and behaviours.

Parents and advocates welcome the audit.

“I’m thrilled,” said Laura Kirby-McIntosh, a Thornhill mother of two children on the autism spectrum and founder of Ontario Autism Coalition, a parent advocacy group.

“We’ve been calling for some sort of financial accountability… and advocating for this since 2005.”

She is among many parents who have complained about the seemingly arbitrary process that decides which children get treatment and for how long. Many wonder about the costs of administering the program. They also question the effectiveness of a new $25-million initiative that provides just a few hours of applied behaviour analysis treatment (ABA) over several weeks or months to focus on a specific skill.

Some families also want the right to receive funds and make their own choices about therapists and treatment options. They argue it is more cost-effectivethan being forced to go through regional agencies. But too often they say they aren’t given that choice.

Kirby-McIntosh said the audit is important because children who don’t get early treatment are likely to cost the health, education, social services and criminal justice systems more when they reach their teen and adult years.

It’s a case of “you pay now, or you pay later,” she said.

Loading... Loading... Loading... Loading... Loading... Loading...

The lack of investment in early treatment doesn’t make sense, said Simone Papernick of Whitby, who was told in 2011 that her son, then 2, could wait six years for a provincially funded spot.

“I’m hoping they will realize they get better bang for their buck, the earlier intervention is given.”

Families are constantly raising questions about how funds are spent and why waiting lists move so slowly, said Marg Spoelstra, executive director of Autism Ontario.

“So if some of those questions can be answered in a public and transparent way, that’s good news.”

Spoelstra said she hopes the audit will pinpoint ways to save money “so more kids can be served (and) to make the programs more effective.”

Dr. Wendy Roberts, a leading expert at Holland-Bloorview Kids Rehabilitation Hospital and Toronto’s Hospital for Sick Children, and a member of the new blue-ribbon panel, praised the move.

“I welcome the audit and hope it helps guide future policy and funding to help families that most need it.”

However, Ottawa parent David Hurd expressed reservations.

“The thoroughness of this audit will depend on the expertise of the team,” said Hurd, who has spent two years fighting a ministry decision to discharge his son from therapy at age 5.

He also noted the children’s ministry is only one piece of the autism puzzle. The multiple ministries involved exacerbates the confusion, service gaps and lack of efficiency and consistency, he said.

“This is a lifelong medical condition,” said Hurd, who argues the health ministry should be in charge of co-ordinating all government services.

The increasing public pressure is also evident at the office of the provincial Ombudsman, which has received more than 400 complaints “and counting” about the desperate situation for young adults, said spokesperson Linda Williamson.

Families have been asking Marin to expand his investigation to include autism services for children. But Williamson said the ombudsman typically waits until any audits are complete to avoid duplication.

This year is the first time McCarter has disclosed audits in advance. Autism services are among 11 audits for 2013 posted on his website. Others include a program for violence against women to the healthy schools strategy, Ontario Power Generation and civil and family courts.