New 1:68 US autism prevalence data released amid persisting services gap

March 27, 2014

In the week leading up to World Autism Awareness Day on April 2, the US Centers for Disease Control issued a report pegging autism rates at 1:68.

"Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010" generated a flurry of social media discussion upon its March 27 release, amid concerns about what may underlie the apparent jump from 1:88 children to the new prevalence figure, as well as persistent problems with lack of access to services.

"The number reported today is within the range of the Canadian number," says Dr. Evdokia Anagnostou, NeuroDevNet investigator, and a clinician scientist based at Holland Bloorview's Autism Research Centre. "The range for the American report is huge," adds Dr. Anagnostou, "from 1/45 in New Jersey to 1/175 in Alabama. The southeastern Ontario numbers for the same year for the same age range is 1/61 and the Manitoba numbers are 1/100. I am not panicking with these numbers."

Dr. Anagnostou notes large geographic variability in the data, and that 2/3 of the children diagnosed now are high functioning.  "Unfortunately," she adds, "the age of diagnosis has not budged for either country, it's still at four to five years. The other interesting note is that the rate correlates with availability of services.  As services improve, numbers go up."

Availability of services featured heavily in a Q&A on the prevalence data with Autism Speaks Chief Science Officer, Dr. Robert Ring. "Behind all these numbers are real people – millions of children and adults affected by autism," Dr Ring states. "These numbers also represent a huge and growing unmet need for services. This includes the need for medical, education, social and employment services and supports."

The numbers are "real," adds Dr. Ring - "we are getting closer to uncovering the true prevalence of autism spectrum disorder (ASD) in the United States. However, the indirect method the CDC uses to detect ASD is no doubt missing some, perhaps many cases. This is because it counts cases by reviewing records of autism-related services. So it only captures children who are already in the system and receiving services. It misses all those who have autism but remain undiagnosed or who otherwise cannot access services."

Lively controversy erupted in January in Quebec's French language press. Dr Chantal Caron, head of the autism program at l'hôpital Rivière-des-Prairies in Montreal was quoted in La Presse acknowledging increasing prevalence of autism in the province. Rates, she said, had doubled twice in the last ten years, but more expansive criteria for diagnosis was placing more stress on services and the budget, and early intensive therapy (20-40 hours a week in pre-school years) was "horrifying," rewarding children's every micro-achievement. The article provoked a strong response from eminent researchers and clinicians

"We find we are alarmed by the increase in prevalence in the number of children affected by autism spectrum disorder," they wrote, "a preoccupation we share with numerous parents, rightfully so. We have the opportunity to act preventively, at a young age, which will help prevent emergence of severe behavioural and mental health issues in adulthood." 

In the meantime, 1300 parents have signed a petition presented to the Quebec National Assembly seeking a $12.2M increase in funding for autism services. The waitlist for the West Montreal Readaptation Centre sits at 500, creating long delays for assessment and treatment. Parents signing the petition said this forces 40 percent of them to pay for their children's treatment out of pocket.

"In order to achieve success across the autism spectrum, we must intervene early intervene often and intervene across the life span," observes Tom Collins, president of the Sinneave Family Foundation, which is playing a leading role in autism service provision and research partnerships through its child organization, the Ability Hub. The Calgary-based Ability Hub offers a range of evidence-informed programs, focusing on transition planning as well as life and work skills that will help the growing number of children, youth and adults on the autism spectrum build on the gains made as a result of intervention in the preschool years.

Canada’s leading role in early diagnosis and cross-lifespan intervention will be highlighted April 2 on Parliament Hill. "World Autism Awareness Day is moving public knowledge and government policy forward around the globe," said Margaret Clarke, the Foundation’s senior vice president of policy and programs. "The Ability Hub supports this global movement, and members of our team will be showing their support in a number of activities across Canada."

Click here to access the full CDC report
Morbidity and Mortality Weekly Report Surveillance Summaries / Vol. 63 / No. 2
March 28, 2014
U.S. Department of Health and Human Services
Centers for Disease Control and Prevention