Autism is a neurodevelopmental condition that affects around 1 in 36 kids in the U.S. Boys are four times as likely as girls to be diagnosed with it. While we still don't know what causes autism, huge strides are being made in helping people on the spectrum find ways to engage with the world.
The "Brains on Tap" series is a collaboration between the Brain Health Research Institute at Kent State University, the Northeast Ohio chapter of the Society of Neuroscience and Ideastream Public Media.
A recent talk at Bell Tower Brewing in Kent looked at building inclusive environments for kids with autism and neurodiversity.
It featured:
-Stacy Miner, Ph.D. Assistant professor of Nursing, Kent State University
-J.R. Campbell, Design Innovation Initiative, Executive Director, Kent State University
-Catherine Farina, Director of Administration, City of North Canton
-Lisa Audet, Ph.D., Director of the Neurodiversity Research Initiative, Kent State University
Below are some transcripts excerpted from the event:
Stacy Miner: You've heard the expression, ‘if you met one child with autism, you've met one child with autism.’ My research is on the different ways that autism presents. I found as a nurse, it's difficult to treat it clinically when there are so many different variations of it.
I actually started researching this 12 years ago when my son was diagnosed with autism.
My child with autism is so different than another child with autism who potentially has seizures or has no verbal skills. I would call my son's autism, ADHD and anxiety and sensory processing problems, whereas another child with autism could be GI disturbances and something completely different.
The challenge as a parent is to figure out which type of autism your kid has and how to help them.
I cried a lot.
I reached out to groups within my community. I fortunately met a mom whose child was neurodivergent and she was able to get me in touch with the speech therapy services. One of the one of the intervention specialists recommended music therapy, which was such a huge breakthrough for my son. He learned to talk because of music therapy.
Let me touch a little bit on sensory processing. My son could hear, but he didn't know how to interpret what was important to listen to and what was not. So if he's sitting in this room, he might hear the vents, he would hear some background noise, he would hear maybe even the lights, and he wouldn’t know which was most important to listen to.
But when he listened to it with music, he can hear that tone.
So our music therapist recommended that we sing everything in our home instead of saying it. (And whenever you're singing everything in your house, it's like living in a musical.)
We would sing books instead of read books. He would start singing the books as well, and he would mimic my tone. And we also used a picture exchange. If my son wanted a snack and couldn't find the words to tell me a snack, he could hand me a picture of what he wanted to eat.
One day he asked me why I sing, and I said, “because it makes me happy.”
I asked, “What makes you happy?”
And he said, “You not singing.”
So he has a very wide vocabulary now.
J.R. Campbell is director of the Design Innovation Initiative at Kent State University and former director of the KSU School of Fashion.
J.R. uses technology, art and design to innovate in a wide range of disciplines.
He recently led a design competition to involve neurodiverse college students in finding new ways to interact using play.
Campbell: What we proposed initially as a maybe a hackathon experience evolved and turned into this event that we co-designed together called ‘Let's Make the Rules.’
The idea was to use game design to allow the students to work together or to work on their own to make their own rules to a game that helps others understand their experience. We treated it as a pilot experiment because it's a new it's a really a new approach.
When we talk about rules, in the case of autism, is that one of the things that sometimes happens is that the understanding of rules of engagement or communication becomes a challenge. Games are a way to delineate some of those expectations to play with them in ways that address our experience.
We talked through the idea of games, gave them resources, and let them loose in our maker spaces to start making their own games.
There were two teams that worked on a kind of role playing games that had challenges for conflict and the ability to kind of level up and or to increase in stature and experience that. It was a complex playing board that was sort of a three dimensional. They wanted to create hexagon-based components that could be chips that could be laid down in different ways and literally also build up in 3D to create status for the players or the characters.
There was another who created a really interesting card game that was that was really about the rules, like the game was literally about playing it to understand or to experience the rules without much introduction.
Lisa Audet is the director of the Neurodiversity Research Initiative at Kent State University.
Audet: We also have a research component to see the impact that it has on the students. But one of the things that J.R. did was he asked the folks who the groups that were making the games, “What challenge about your experience does this game address?”
And one group said, “well, you know how you can't give up. You need to persist.”
Another young man made a game about dreams and talked about how if you cannot articulate your dream, then people can underestimate you and not understand who you really are.
Catherine Farina is director of administration at the City of North Canton. She is the driving force behind a newly open playground in North Canton that includes equipment designed to allow autistic kids to interact in different ways.
Farina: Possibility Playground in Dogwood Park is a very thoughtfully designed, 25,000 square foot, fully inclusive, adaptive playground. It started as a dream and a hope and a wish in 2017. It actually opened in 2022, and it's been very successful.
I got introduced to autism in 1999. I had a healthy little baby boy and he looked normally functioning, but around 15 months old, an age where they should be speaking and having good eye contact, he was a little different. Unlike my daughter who wanted to sit on my lap and read a book, he arched his back and screamed and fell on the floor. And he didn't engage with other children as much. I just thought, well, that's his personality, right? He's a boy. Boys are like this, right? He had little language. There was a little bit of I know now echolalic speech. He just echoed something, but it really wasn't functional speech.
But I got even more hopeful. We started with PECS (Picture Exchange Communication System). He was a visual learner. He was learning to read while he was learning to speak.
I did ABA Applied Behavioral Analysis, which is a also a therapy that you do with children, and it was an intensive 40 hours a week. We did OPT (Oral Placement Therapy)…so I have this personal connection obviously.
So flash forward 20 years and he's doing great. Thank God he's wonderful. He's graduated from college…
Now I'm working at the city of North Canton and a parent calls and says, “I have a child in a wheelchair and I cannot enjoy a playground.” And so I'd look into with our parks director - all of our playground surfaces are mulch. So you can't put a mobility device - crutches and wheelchairs don't do well on mulch.
So I started doing research. I wrote to legislators. I got a capital award from the state of Ohio for $750,000. Akron Children's Hospital gave me $250,000. The Hoover Foundation gave me 250,000. All in all, it's a $1.9 million project, and it's amazing.
Children should all be able to just play and have and just remove the barriers so they can all play together. And once they get in there, they don't know who has a disability.
The one missing piece was how to help kids struggling with a communication challenge.
So the Greater Akron Autism Society put me in touch with this wonderful group at Kent State…
Lisa Audet is the director of the Neurodiversity Research Initiative at Kent State University.
Audet: PECS (picture exchange communication system) is one way of facilitating communication with somebody who is non-verbal. You just touch the picture and your communication partner knows what it is you're trying to say. It can also go high tech, to devices that are to have dynamic screens. There's also voice output and it can do text to speech, connect to the internet. So it goes from very simple picture exchange, which is sharing a picture to something very complex. It all falls under the category of assisted communication, Augmentative Assisted Communication.
I did a research project where I had students come out to Dogwood Park and they recorded what the children were saying on the playground and they were at different stations and they moved around the different stations. We came up with a list of what kids are saying. For example, they crawled under one piece of equipment and they said it was a jail. And then they said it was a castle. So, we had all of this data, and then we did an analysis and we came up with what we think should be on the board.
A beautiful thing is, we recognized that there was an area in this playground where kids went to be quiet. Children need little withdrawal time, right? They get tired. They get hungry.
And we noticed that kids were going and spending time alone in this one area. And we thought, you know, kids need to communicate about what's going on with them when they're distressed or sad or hungry or hot. So we developed a board for that as well.
