SARATOGA SPRINGS — Saratoga Bridges’ 11th annual Autism Expo and Art Exhibit will be held April 23 from 12 to 3 p.m. in the Saratoga Springs City Center, offering a wide variety of resources for individuals and families with autism.
The event first began in 2012 at Skidmore College, and has continued to grow each year. Over 900 attendees are expected at this year’s Expo, said Saratoga Bridges assistant director of communications Pamela Polacsek.
The Expo also allows attendants to connect with each other, and share experiences and resources.
“I think that’s where you’ll get a lot of solid parental input,” said Mariah Hahn. “It helps you feel part of a community. You don’t have to be desperate, we’re going to figure this out.”
Hahn, who attended last year’s Expo, knows this well. She and her husband Juergen are the parents of Lucas, an 11-year old boy with profound non-speaking autism. The Hahns say that Lucas’ condition has been challenging due to a variety of factors, including a lack of research and treatments for profound autism.
“There are areas that we felt weren’t being explored,” Mariah Hahn said.
“The reality of a lot of medical research, including on autism, is they focus more on people who are actually least-affected by it,” said Juergen Hahn. “It’s much easier to deal with. If you have somebody who is nonverbal, you can’t really ask them the question, ‘How do you feel?’”
Both Mariah and Juergen Hahn are faculty members at Rensselaer Polytechnic Institute, studying biomedical engineering. They attempted standard therapies and treatments for Lucas, including applied behavior analysis, occupational therapy, physical therapy, and speech therapy. They also looked into supplements and medication for ADHD and mood dysregulation.
“Unfortunately, those have been non-beneficial, in fact sometimes have even been harmful,” Mariah Hahn said.
But a new method has given the Hahns hope. Called Spelling 2 Communicate or the rapid prompting method, it utilizes a letterboard to allow a person with non-speaking autism to communicate by pointing to letters on the board.
The Hahns say it is often assumed that because Lucas and other children with profound autism are non-speaking, their intelligence is also impaired. But the Hahns don’t necessarily believe that to be the case.
Many communication devices restrict speech to simple phrases, and Mariah Hahn is questioning if this is truly the highest level of communication possible, or simply a confine of the communication method.
“They really confine your speech. Like, he can say, ‘I want more fish,’” said Mariah Hahn. “Right now, they’re like, ‘Well that’s the level he can communicate at.’ Is it? That’s where we have to stop. We have to ask, is it? Or is it a confine of the situation?
“We never question, is the type of communication or the modality in which it’s delivered, combined with their own deficits, or their own struggles, preventing them from saying more? And, if they are present, is this really what they would want to be confined to?”
But the S2C/RPM method has also seen some resistance, with a lack of scientific evidence surrounding the method. Juergen Hahn even admitted he was a bit skeptical at first, before seeing Lucas utilize the method with
a practitioner.
“I can tell you, I was very skeptical myself,” said Juergen Hahn. “But I’ve seen my son work with this, with a skilled practitioner. I have no doubt that these are the things he wrote. And he wrote some fantastic things.”
“There is a lot of resistance to these methods, because the children show, on average, such high level of ability compared to what they’re believed,” Mariah Hahn said.
Since beginning the S2C/RPM method with Lucas, the Hahns are hopeful that word will spread and it will become more widely used. Mariah Hahn said she is “so excited” about a new documentary called, ‘Spellers,’ following the journey of eight nonverbal people who have learned to use the letterboard method to communicate.
“One gift that they can give Lucas and all those with profound autism is to go see it,” said Mariah Hahn. “I can’t tell you how excited these kids are about it.”
Local showings of the film will be held April 26 at 5:45 p.m at the Upstate NY Autism Alliance in Queensbury, April 29 at 1:45 p.m. at the Clifton Park Library, and April 30 at 2 p.m. at RPI.
Hahn said she knows of five other families in the area who are practicing the S2C/RPM method. She said she is hoping to start a homeschool group to teach children at grade level using the letterboard.
“What I’m trying to do is build a community where this is acceptable,” said Mariah Hahn. “There are other schools that have been started. There’s only three in the country, but they’ve been successful, and I’m hoping to start one here.”
This is where Saratoga Bridges’ Autism Expo factors in, allowing families such as the Hahns to meet, discuss ideas, and exchange valuable information. The Hahns said places like the Expo are valuable for finding services, support groups, medical and dental care, and more.
“There is a lot of collective knowledge among families who have children and adults with ASD, and it’s fantastic to tap into that knowledge,” Juergen Hahn said.
The expo will offer therapeutic opportunities, employment resources, recreational activities, academic programs, and more. This year’s Autism Expo features over 70 exhibitors and vendors, and will offer a children’s activity zone, a sensory room, an exhibit displaying works by artists with disabilities, and more. The Expo is free to attend.
“I’ve actually seen practitioners become inspired to do things, and open their practices to those with severe autism, profound autism, having attended this,” added Mariah Hahn. “In fact, one person in the area is actually being trained in S2C. … She’s now pursuing training in S2C because of what she saw when she attended the Autism Expo a year ago. It’s kind of an all-around community thing.”
