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Report identifies challenges for those with autism


Jimmy Everard’s job is pretty varied. As a ground assistant at the Elaine Dobbin Centre for autism, his workday consists of everything from snowclearing in the winter to gardening in the summer, as well as composting. He’s got plans to one day go to college and do a trade, perhaps heavy equipment operation or carpentry, but right now he says he’s happy where he is and wouldn’t change it for the world.

William Feltham also works at the Elaine Dobbin Centre. He’s been a custodian there for the past two years and enjoys everything about it. He has thought of being a trucker, he says, but is content to go with the flow, do what he loves and see where it takes him.

Everard and Feltham, both 25, were excited to attend the release of a report by the Autism Society of Newfoundland and Labrador and a team of researchers at MUN Wednesday morning, and interested to hear the findings.

They’ve got personal reasons for wanting to see changes in services for members of the local autism community: both men have been diagnosed with autism spectrum disorder (ASD), although their circumstances differ.

Everard was diagnosed as a toddler and received programming right away; Feltham, who had been diagnosed as a child with Tourette’s Syndrome, wasn’t diagnosed with autism until he was 16.

“I had a little bit of a problem in school,” Feltham explains. “I never really thought of autism until I got older and when they finally figured it out, my parents sat me down and talked about it. Then I went to the centre and learned more about it, and have learned even more these past few years, since I’ve been going to a support group (at the centre) with other adults.

“I have friends, we hang out, and it’s not like I’m spending my Saturday nights at home. I’m living a normal life, like any other 25-year-old.”

The report released Wednesday was compiled based on more than 40 interviews and 640 survey responses from people living with ASD, their caregivers, health service providers, educators and others, and identified significant gaps in the services provided to members of the autism community — gaps that in some cases have been ongoing for years, says Scott Crocker, executive director of the Autism Society of Newfoundland and Labrador.

“People have been advocating for improvements in the autism community since way back in the ’90s,” he says. “We’ve basically been advocating for some of the same issues. They keep repeating themselves over and over again. We’re talking about supports in schools, we’re talking about getting the wait times down for diagnosis, we’re talking about employment opportunities for adults, we’re talking about a health-care system that will assist an adult who is 24 years old and has an autism diagnosis. We need a lot of those changes to occur.”

The challenges faced by families and individuals dealing with ASD are huge, Crocker says, and growing.

One of the biggest concerns identified in the report — nothing new to those in the community — is the lack of services available for older individuals with ASD, once they have finished school and are too old for the pediatric health-care system.

Caregivers also expressed exasperation with long wait times for assessment and treatment.

Dr. Rick Audas, associate professor of health statistics and economics at MUN and one of the report’s authors, presented the information to members of the autism community, media and others.

“As a parent of children myself, any time you have to wait for access to services, it’s frustrating and something that causes a great deal of angst and can be quite debilitating in families,” Audas says.

Among educators, there were concerns about a lack of understanding of ASD. Some had the required expertise, but not all teachers or guidance counsellors reported having the needed exposure, Audas says.

The same went for family doctors. Educators also pointed to a need for better transition planning, especially when it comes to the transition out of school.

“Taking a child that’s been in the education system for 13 years and saying, ‘You’re done now,’ and not really having a transition plan to say what comes next … what are their options and how (they) can progress things forward into meeting that ultimate potential is an area where there is certainly not enough being done,” Audas said.

The report included 26 recommendations. Among them:

 • Identify lower-need/high-functioning adults with ASD and work toward skill development and job coaching with the goal of job placements.

• Development of mental-health services for children and adults with ASD, and treatment of ASD as a set of symptoms that can also include anxiety, depression, obsessive-compulsive disorder, oppositional defiance disorder and attention deficit disorder.

• Reduce wait times for assessment, diagnosis and intervention therapies.

• Implement mandatory in-service training on ASD for all school staff.

• Remove the IQ 70 criterion for service access.

Everard and Feltham both say they are pleased with the recommendations in the report.

Feltham is looking forward to reading the report in its entirety, while Everard took the opportunity to stress a point at the presentation for himself.

“Lower-functioning adults, when they graduate from high school, there’s not much they can do out there in the community, which is totally not acceptable,” he said. “There has to be some sort of service for them. I hope that the government provides services for people with ASD, especially the lower functioning. It desperately needs to happen in this province, and in the rest of Canada, too.”

The full report is available online on the Autism Society of Newfoundland and Labrador’s website at www.autism.nf.net.

tbradbury@thetelegram.com

Twitter: @tara_bradbury

William Feltham also works at the Elaine Dobbin Centre. He’s been a custodian there for the past two years and enjoys everything about it. He has thought of being a trucker, he says, but is content to go with the flow, do what he loves and see where it takes him.

Everard and Feltham, both 25, were excited to attend the release of a report by the Autism Society of Newfoundland and Labrador and a team of researchers at MUN Wednesday morning, and interested to hear the findings.

They’ve got personal reasons for wanting to see changes in services for members of the local autism community: both men have been diagnosed with autism spectrum disorder (ASD), although their circumstances differ.

Everard was diagnosed as a toddler and received programming right away; Feltham, who had been diagnosed as a child with Tourette’s Syndrome, wasn’t diagnosed with autism until he was 16.

“I had a little bit of a problem in school,” Feltham explains. “I never really thought of autism until I got older and when they finally figured it out, my parents sat me down and talked about it. Then I went to the centre and learned more about it, and have learned even more these past few years, since I’ve been going to a support group (at the centre) with other adults.

“I have friends, we hang out, and it’s not like I’m spending my Saturday nights at home. I’m living a normal life, like any other 25-year-old.”

The report released Wednesday was compiled based on more than 40 interviews and 640 survey responses from people living with ASD, their caregivers, health service providers, educators and others, and identified significant gaps in the services provided to members of the autism community — gaps that in some cases have been ongoing for years, says Scott Crocker, executive director of the Autism Society of Newfoundland and Labrador.

“People have been advocating for improvements in the autism community since way back in the ’90s,” he says. “We’ve basically been advocating for some of the same issues. They keep repeating themselves over and over again. We’re talking about supports in schools, we’re talking about getting the wait times down for diagnosis, we’re talking about employment opportunities for adults, we’re talking about a health-care system that will assist an adult who is 24 years old and has an autism diagnosis. We need a lot of those changes to occur.”

The challenges faced by families and individuals dealing with ASD are huge, Crocker says, and growing.

One of the biggest concerns identified in the report — nothing new to those in the community — is the lack of services available for older individuals with ASD, once they have finished school and are too old for the pediatric health-care system.

Caregivers also expressed exasperation with long wait times for assessment and treatment.

Dr. Rick Audas, associate professor of health statistics and economics at MUN and one of the report’s authors, presented the information to members of the autism community, media and others.

“As a parent of children myself, any time you have to wait for access to services, it’s frustrating and something that causes a great deal of angst and can be quite debilitating in families,” Audas says.

Among educators, there were concerns about a lack of understanding of ASD. Some had the required expertise, but not all teachers or guidance counsellors reported having the needed exposure, Audas says.

The same went for family doctors. Educators also pointed to a need for better transition planning, especially when it comes to the transition out of school.

“Taking a child that’s been in the education system for 13 years and saying, ‘You’re done now,’ and not really having a transition plan to say what comes next … what are their options and how (they) can progress things forward into meeting that ultimate potential is an area where there is certainly not enough being done,” Audas said.

The report included 26 recommendations. Among them:

 • Identify lower-need/high-functioning adults with ASD and work toward skill development and job coaching with the goal of job placements.

• Development of mental-health services for children and adults with ASD, and treatment of ASD as a set of symptoms that can also include anxiety, depression, obsessive-compulsive disorder, oppositional defiance disorder and attention deficit disorder.

• Reduce wait times for assessment, diagnosis and intervention therapies.

• Implement mandatory in-service training on ASD for all school staff.

• Remove the IQ 70 criterion for service access.

Everard and Feltham both say they are pleased with the recommendations in the report.

Feltham is looking forward to reading the report in its entirety, while Everard took the opportunity to stress a point at the presentation for himself.

“Lower-functioning adults, when they graduate from high school, there’s not much they can do out there in the community, which is totally not acceptable,” he said. “There has to be some sort of service for them. I hope that the government provides services for people with ASD, especially the lower functioning. It desperately needs to happen in this province, and in the rest of Canada, too.”

The full report is available online on the Autism Society of Newfoundland and Labrador’s website at www.autism.nf.net.

tbradbury@thetelegram.com

Twitter: @tara_bradbury

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