Independent Perspective In-Depth Episode 4

Guest:  Loren Penman

Topic:  Autism Nature Trail at Letchworth State Park

Duration:  29:45

Published:  March 25, 2021

Host:  Welcome to Independent Perspective In-Depth, a program presented in the public interest by Western New York Independent Living family of agencies, courtesy of the Niagara Frontier Radio Reading Service. Using this long format, we will be exploring the broader issues affecting the community of people with disabilities in discussions with knowledgeable individuals from a variety of organizations and backgrounds.

We are delighted to have as our guest for today, Lauren Penman who is the volunteer Genesee County representative on the Genesee Region Parks Commission, although we will be speaking to her about her role in a particular project. We are your hosts, Jillian Moss Smith, and Ernest Churchville, welcome to the program, Lauren.

Guest:  Thank you so much for having me.

Host:  Although you've retired from that position now, you have a long history as an educator, please tell our listeners a little bit about yourself.

Guest:  My career started in the Cleveland, Ohio area as a high school English teacher. My husband and I worked in Western New York since then, we moved here in 1976, we're here for good. And I taught and was a school administrator in eight different districts in Genesee and Monroe counties, had a wonderful career, took three times to retire, but now I'm happily working on this project, pretty much full time as an unpaid volunteer.

Host:  Awesome. So, you're actually here to talk about the Autism Nature Trail which we understand you conceived after conversations with some neighbors who had young relatives with autism. Can you tell us how this came about and more about this innovative initiative?

Guest:  Jillian and Ernie, this was six and a half years ago, were having a conversation with a neighbor about Letchworth State Park, and she commented that her grandson was particularly fond of the park. One area of it, because they weren't comfortable taking in too many places within the park, because of his autism. And at the time he was seven, nonverbal, and pretty much in a constant state of agitation, except when he came from Albany where he lived, to visit his grandmother, and she took them to Letchworth. And I said they should try other places in the park, 14,000 acres, she was very reticent to do so. So, a couple of weeks later I happened to share this conversation with another neighbor, who happened to have a grandson in New York City, with autism, and she was struck by the comparison. Although her grandson was a little older and verbal, he also was often distracted, and in Letchworth, he seemed to be at peace, more relaxed. And we talked a little bit about oh the healing properties of nature, but it did seem odd that both grandmothers would make a point of saying they saw a marked difference in their grandsons in Letchworth. So, it sent us on this Google search on steroids, I like to call it, and just went in a million different directions to see what this might mean. And it led us to the research being done at Columbia University by Michael Terman. Dr. Terman studies circadian rhythms and sleep disorders, and the influence of light and dark on sleep patients. But he also is doing work with negative and positive ions, and what he's found is, cities, like Albany, and New York where these young men were from have a preponderance of positive ions from light and noise and pollution and crowded conditions, and that's not good for human wellbeing. And a place like a park, creates much more negative ions, beaches, parks, places of solitude. And he asked about Letchworth State Park, in particular, he said is there the presence of moving water. Absolutely the Genesee River runs right through the middle of the park. He said, How about pine forests. Yes, we've got just pine everywhere. He said his research had determined that where there is a preponderance of moving water and pine forests in combination, that is where we find the most negative ion concentration in nature. He said I don't know anything about autism, but it seems to me like it's probably a good place for everyone. Maybe in spades for those on the spectrum, and he advised us to look into it more, which is exactly what we did.

Host:  Wow. Boy, our kudos to you for putting all those elements together but the thought occurs, some of our listeners might not be aware of this, where exactly is Letchworth State Park located?

Guest:  It’s a great question, Dr. Terman asked the same one. It is located right here in Western New York about 60 miles south east of Buffalo, and about 55 miles south west of Rochester, so easily commutable from those two metropolitan areas. Interestingly, our data shows that most visitors come from the Erie Niagara region, followed by Toronto, followed by the greater Rochester area, and then everywhere in the world. The park gets up to a million visitors a year. It's been named the number one state park in the country by readers of USA Today. And the number one attraction in New York State by those same readers two years later, beating places like Niagara Falls, Broadway, the Statue of Liberty, think of all of the attractions in New York State. Once you’ve been to Letchworth, you understand why it's called the Grand Canyon of the east, why it has something for everyone. As I mentioned 14,000 acres is a big expanse and it is beautiful, beautiful countryside.

Host:  Wow. That's insane. I, you know, it's funny, having that kind of in your backyard and just never realizing the depth of how much you know people actually like to enjoy it and things like that. I've been there multiple times myself but who knew. So, we gather that you have assembled an advisory panel to discuss what might be useful for the autism nature trail?

Guest:  Indeed, we started at the top, after our conversation with Dr. Terman, we made a phone call to Dr. Temple Grandin at Colorado State University, probably the best known person with autism and autism advocate I dare say in the world. And I had a chance to speak with, well, we sent a Hail Mary, email first, and then I had a chance to speak with her assistant Cheryl Miller, who clearly was vetting me, not really the idea that we had presented, and after maybe 15 minutes or so she said that Dr. Grandin was very interested in your email where you thought, perhaps, creating a special place in this park, specifically for persons on the spectrum was a unique idea and I think you'll hear from her. So, I thought, wow, that would be wonderful. Well, she's got my email address and about 20 minutes later my cell phone rang, and a voice said, this is Temple Grandin, and Dr. Grandin has been our first and, and certainly most direct advisor throughout this entire process. She is the one who gave us some precepts and asked us not to stray from them. For example, she said people will try to get you to move this location to a different place closer to populations, she understood we were between Buffalo and Rochester. She said, expect people to say oh come closer. Don't give up the deep nature, don't give up what you've learned from Dr Turman, this location sounds perfect. And, and I will always remember she said and don't build a strip mall nature trail. So that meant something to us, she talked about getting truly getting away from the sound of pop cans coming down the chute in a pop machine, a vending machine. Traffic, even if we could avoid air traffic and keep it as much deep nature as possible. She told us we needed to find persons to staff the trail, who were not only interested in nature, but who were trained with the special needs population, she said don't sacrifice one for the other. And she told us that if we were going to want to keep people engaged, we were going to need to create stops, she called them along the trail to interact with nature, but we'd also have to have places of refuge. Very often, families get going on some activity together. And this is true of any child who can have a meltdown, people feel like they've got to get out and families who have never completed a full grocery trip who have never sat through an entire church service, who'd never finished a meal at a restaurant. She said, give them an out. And have a safe place where they don't have to run to the parking lot. We took that advice very, very seriously. We thought that that was an important consideration. She talked about self-soothing activities so that young people, and any person who needed that break from stimuli could find an escape. And she said start with an orientation of some kind, that gives the visitor a view of what's about to happen. And if you can make the beginning and the ending the same place, so that it's clear that you're going to start and end safely in the same vicinity, and make sure the trail is well marked and predictable. That while you want to build in challenge and choice, you also want to make sure that any person with anxiety does not feel like they're going to get lost. So, we took all of that into consideration. And because we certainly did not want to be calling Dr Grandin every other day, we've also assembled a volunteer team of advisors of speech and language pathologist, occupational and physical therapists, autism experts. We had school psychologists, school social workers, administrators, counselors, it was a 17-member panel, and it also included family members and persons with autism as advisors as well. As we got closer to construction, we have engaged young adults in particular, with a voice at the table for our construction. The design was early on, and construction brought us into a new phase with new input. So we've, and then the design team itself these were the paid professionals included architects and landscape architects, it included two PhDs from the University of Rhode Island, who also have a business called Autism Level Up, and it included a natural playscape designer from Ithaca, New York. It was a just an amazing group of people and I said they were paid professionals. I want to go on record as saying you did not pay them enough, we paid them stipends, and they signed on for the entire length of that, they’re still a phone call away anytime we need them. So, I can't say enough of the depth and breadth of input we've had into this project.

Host:  My goodness, it sounds like you've marshaled quite an impressive array of helpers and experts to get this together, but it occurs to me that we should probably go even more basic for our listeners. I think most people have heard the term autism spectrum, but I suspect are unaware of just how broad that classification is. Let me give you an example that might surprise some people. For 15 years, the show Criminal Minds about the FBI’s Behavioral Analysis Unit played on network television. A memorable character present for the entire run was Matthew Gray Gubler, eccentric genius, Dr. Spencer Reid who was rarely at a loss for words. While it was never definitely stated in the dialogue writers have confirmed that the Reid character was a high functioning autistic. Can you educate our listeners about what all is included in autism?

Guest:  Ernie, you know, there’s an expression when you've met one person with autism, you've met one person with autism, or when examined one case of autism, you've examined one case of autism. And I think, to tie back to our volunteers, and the professionals interested in working on this trail, everyone seemed to know, have some perspective on autism, and they, the uniqueness of the disorder was important in making the trail, unique, as well. And having a range of persons with various experiences with autism has really made this nature experience so much richer. Autism is a broad, broad spectrum, and can range from behaviors that can actually be advantageous in maintaining certain jobs. For example, sometimes there are persons with autism who are somewhat fixed on tasks that are repetitive and might be considered boring to other employees but are fascinating and present the just the right balance of structure and repetitiveness, that is needed. All the way to persons who will need full time care for their entire lifetimes. It is a disorder, but it's not necessarily always handicapping. Very often, persons on the spectrum are able to self-regulate and Dr. Grandin is a wonderful example, where she had early intervention. She was diagnosed in the 50s, when not a lot was known about the diagnosis and her parents were advised to institutionalize her immediately. She didn't speak until she was four. Her mother would have none of that and pushed very hard, had the means fortunately to provide lots of early intervention. And as a result, Dr Grandin who would tell you that she is clearly on the spectrum, has a PhD in Animal Science, maintains a position at a State University and is a world renowned and sought-after consultant and speaker. So it is indeed very individual, very personal, and trying to capture the needs, or strengths or abilities or proclivities, for any person with autism, on this trail was a monumental challenge, and we don't pretend that we've done that, but we certainly have always kept in the back of our minds that everyone can enjoy this trail, with or without autism, and we hope that we've hit some of the needs and interests of a person who had that diagnosis. Interesting that you should mention television, a just, the most recent episode of The Good Doctor, and ABC television show about a young surgeon on the spectrum. He, in the most recent episode he encounters another doctor that he's certain is on the spectrum who has resisted his entire life, the diagnosis, and there is some of that as well. And people say, why is there so much incidence of autism now. I think that there's always been autism it's not so much a disease, it isn't a disease, as it is a different way of being, a different way of thinking. And sometimes that's tremendously advantageous. But I don't want to minimize those families who are living with the disorder when it can be debilitating and when it can be stressful. It's a full, full range, and I hope that we've given some, some attention to where everyone is on the spectrum when they come to visit.

Host:  Thank you so much. That was really great information. So, I guess where we want to move next is what makes the trail especially engaging for people with autism, what are its unique features?

Guest:  Some of the unifying factors in diagnosing autism are around sensory perception and integration. And those are, those have been the two watchwords if you will, of our planning for the trail. Each of the stations will address a different kind of sensory need. But it’s beyond, and this is what we have to explain to a lot of people, you know, why is yours so different. I know that there's a sensory garden in New York City, isn't it just like that. And that is something that is designed to appeal to the five senses. This is a little different and let me give you an example. I'd like to be able to talk about each of the stations but let me jump ahead to the playful path, which was developed based on a story that we heard from a mom with a little girl who was on the spectrum and nonverbal, but generally a very happy, compliant, cheerful, child, except when they went to one particular home of a relative. And every time they pulled in the driveway, she screamed, they would have to take her kicking and screaming out of the car. When they got in the house, she was fine, and they couldn't imagine what the problem was, until they happened, and it was trial and error and it took months, they realized that the driveway of this particular relative's home was gravel. And it was the only opportunity that this child ever had to feel gravel underfoot and the feeling of it, that proprioception was distasteful to an extreme to her. And now, when they visit this particular relative, they pull up on the grass, open the car door, the child jumps out runs across the grass to the front door, and all is good. So, while we certainly didn't want to be either diagnostic or prescriptive with this trail, this is about outdoor recreation for everyone. We certainly did want to incorporate that kind of idea into one of the stations. So, the playful path is the main trail, going down the middle with segmented serpentine like pieces of different material underfoot. Now, for any child or any individual, it's kind of a fun little thing to try how this feels different than how pine needles feel different underfoot than gravel does or how sand feels different than mulch or how woodchips is slightly different than typical garden mulch. So, we'll have about a half a dozen different forms of trail surface in addition to the fully ADA compliant main trail that is made out of stone dust. So, you'll be able to tell right away when you step off that trail onto one of these segments. You can hop and skip right on and off, if it's something that doesn't appeal to you, you're back on, you just hop right back on the main trail. And I think for some children, it's just going to be a delight to feel something different underfoot, and for others it may be, it may be a little diagnostic for a parent or a teacher who was wondering, why can't I get this child to engage in this particular setting. So that's a specific example, but each of the stations really does have something that is unique to this sensory processing and integration concept.

Host:  You've already mentioned that the activities in the park are designed for all people. Those of us in the advocacy business have long noted that accommodations for people with disabilities ultimately benefit others such as the wheelchair ramp, that's also used by mothers with strollers, maintenance personnel with equipment wagons and seniors with personal grocery carts. How can the trails serve park patrons who are not autistic?

Guest:  We've kept it what would a study at Stanford University called the curb cut effect. If you remember back in the 80s when universal design was introduced, and curbs were cut to do exactly what you just mentioned, Ernie, it was designed for wheelchair use, and yet every mother with a stroller, every athlete nursing an injury, every musician trailing a cello or an artist with a portfolio, ended up using or bicycles or skateboards or scooters, all used the cut curb. And exactly as you say, whatever we do, that accommodates one group, very often accommodates all of us. There's a wonderful cartoon of, clearly it's an elementary school on a snowy day, and the person charged with removing snow is busily shoveling the steps, while the ramp remains covered in snow. And a little boy in a wheelchair sitting at the end of the ramp waiting and all the other children who are mobile are at the bottom of the stairs, and the snow clearer is saying, let me just get these steps cleared off for all these kids, and then I'll get to the ramp. And one of the little boys at the foot of the stairs says if you clear off the ramp, first we could all go in, and it makes perfect sense. A ramp does not mean that an able-bodied person cannot use it. So, that and we have some choices like that on the trail that for example, if we had to be within ADA compliance for the pitch and elevation of walking into stations and out of stations, and the design area, which is actually right before the playful path is in kind of a sunken area. So we have a rounded way in and out, that kind of loops a couple of times to make the grade safe and compliant for wheelchairs or strollers, or walkers, but there's also some steps that if they rather walk up the steps, you can do that as well. And throughout the trail we have tried to take into consideration persons with vision and hearing difficulties as well, and to have things that will, we hope that we will continue to get input from people and maybe add on to the trail. We've talked about something called a listening poem that amplifies the sounds of the forest, which would be helpful for those with hearing disabilities, kind of a natural hearing aid. We have just recently made a decision that the signage at the station markers will also be in Braille. So we, there's been considerations that the trail surface probably is the most universal, because if you have vision problems you'll still be able to feel the surface and if you stray from it, you're going to know it, it will immediately feel different. If you have mobility issues, the stone dust compacta, and it will accommodate any kind of wheelchair, stroller, walker. And all of the stations too have that access to get to areas beyond just walking the trail. We wanted also people to engage even if their disorder may not be autism, we think everyone's going to find the station's just fascinating, and unique.

Host:  Lauren, we were all prepared to ask you about each of the stations in particular but you've done such a thorough job of describing everything. We only have time enough to ask you, there are probably additional questions our listeners have about the autism nature trail. How can they contact you to learn more?

Guest:  The best way is to go to our website, and there's an easy, fill out at the end if you keep scrolling, and someone monitors that reply every day. We can get, we can answer individual questions very easily that way. We also have a Facebook page, the autism nature trail at Letchworth State Park, and that's monitored daily, if there are questions or you want to start a conversation that includes more people that works as well. We're on Twitter, and that's even more immediate where someone gets a ding, and we know to respond to someone's query or suggestion. We get lots and lots of great suggestions from people that way.

Host:  Lauren, we and those listening are grateful for all the trail promises for citizens with autism. Thanks for being with us today.

Guest:  Thank you so much for having me.

Host:  You’ve been listening to Independent Perspective In-Depth, a program presented in the public interest by the Western New York Independent Living family of agencies, courtesy of the Niagara Frontier Radio Reading Service. Our guest has been Lauren Penman, a volunteer Genesee County Representative on the Genesee Region Parks Commission who is spearheading development of the Autism Nature Trail at Letchworth State Park.