A 24-hour helpline for Rochester-area families with children on the autism spectrum will be place by July 1. It's one of the responses advocates say is needed after the death of Trevyan Rowe.
The 14-year-old, whose family said he had autism, died in the Genesee River after walking away from School 12 in March.
“As the parent of children with autism, that story really hit home hard,” said Andrea Francis of Farmington. “I think the community is still shaken up over it.”
Francis’ 5-year-old twin sons, Keegan and Aiden, were diagnosed with autism when they were 3-and-a-half. Aiden has a mild form of autism and Keegan falls on the moderate to severe end of the spectrum.
Francis can envision taking advantage of the helpline once it’s operating. It will be staffed by trained information and referral specialists who can connect families with the right services. In a true emergency, callers will be directed to 911.
"With children on the spectrum, as much as they love routine and they thrive with it, there is so much unexpected,” Francis said. “You don't know when you're going to be in a situation where someone walks away or wanders off or there's an outburst and you just need additional resources ... professionally trained folks to help you out in navigating through those special services and needs."
Mary Walsh Boatfield, board chair of the Golisano Autism Center, says Rowe’s tragic death makes it clear that there is an urgent need for more services in the community.
In addition to the helpline, the center and its leading partners are also placing an autism navigator at the Boys and Girls Club on Genesee Street in Rochester. This will be a parent of a child on the spectrum, an employee of AutismUp, who has special training to provide one-on-one advice and support to families and individuals facing the challenges of autism.
"Our hope is to reach the 10,000 individuals in our community with autism and to help make that connection with the right services as easy as possible," Boatfield said.
Although the Golisano Autism Center won’t open until the fall of 2019, Boatfield said they want to establish these services now to both raise awareness of autism and ensure that people on the spectrum and the families are getting the services they need.
This story is reported from WXXI’s Inclusion Desk.