The Autism Society Newfoundland and Labrador is urging people and families affected by autism to count themselves in on a provincewide needs assessment
“We want all persons with autism and their families to participate, not just those receiving services from (the government),” executive director Scott Crocker said.
“We want to get the best picture possible of service delivery throughout the province. The assessment, through online and paper surveys, telephone conversations and in-person parent interviews, will confirm services that are available, those that are lacking, and identify the gaps that exist — by rural/urban location, region and age group.”
The society wants to hear about all the needs, including concerns about early diagnosis and followup access to therapies delivered by applied behaviour analysis (ABA) workers, speech-language pathologists and occupational therapists.
Crocker also said there just aren’t enough resources in the school system to cope with an increasing number of students with autism spectrum disorder (ASD) and many are being forced into partial-day schooling or are being home-schooled.
As well, when people with autism become adults, they are at risk of losing access to supports and services if their IQ is above 70, a policy that is perhaps the most discriminatory and exclusionary of all, according to Crocker.
Someone with an IQ above that number may not be able to cope with everyday tasks and their intelligence has no bearing on it, he said.
When the autism society became a registered charity in the 1980s, one in 2,500 people were affected by ASD.
The current rate of autism among children aged 12 and younger is one in 68, Crocker said.
In 2013, there were roughly 700 students in the K-12 school system and 352 preschoolers who were to known to have autism and eligible to receive intensive ABA therapy.
Currently there are more than 1,000 children and youth with diagnosed ASD from birth to school-leaving age.
But the needs assessment — being conducted by Memorial University researchers — is likely to show a much more enormous need that’s hit a crisis situation, Crocker said.
Some things are happening for the positive — waiting lists for diagnosis are easing, Crocker said, but the autism society suspects there are many gaps in services. The assessment will shape its advocacy over the next serveral years.
“The service delivery has become a critical issue,” Crocker said.
While education officials will cite all the services that exist, those who have tried to access them or who have worked in education — Crocker was a principal for years — say the reality is there is not enough programming and specialized staff such as guidance counsellors, teaching assistants and special education teachers. Inclusion in the mainstream classroom is a wonderful idea, but the supports aren’t there, he said.
He said last year, 150 children were home-schooled — for reasons that may also include religious or other choices — and in many cases that means a mother or father may have to give up a career to provide that extra support for children with autism or other learning disorders.
Crocker said he suspects the needs assessment will show a lot of adults with autism are at home doing nothing because the support services aren’t there for them and that will also reach a crisis stage, as once they become adults and don’t meet the IQ threshold, their services are cut off. There may be gaps in employment opportunities for them as well.
He said professionals in the field estimate those with ASD may comprise as much as one per cent of the population, with or without diagnosis, but the lack of any epidemiological study in Canada leads to uncertainty about the true incidence rate.
The Public Health Agency of Canada, in consultation with the provinces, is embarking on such a study, he said.
Parents and caregivers can register to participate in the Autism Society Newfoundland and Labrador survey at autism.nf.net; or by emailing Crocker at firstname.lastname@example.org; or by calling headquarters at 722-2803 or toll-free at 1-866-722-2803, and providing your name and contact information.