When parents are told their children are on the autism spectrum they can turn to the Autism Society of Northwest Ohio for support and information. We chat with the executive director Kate Schwartz.
Staying in Contact with London Mitchell
Guest: Kate Schwartz, Down Syndrome Association
Let's take a few minutes away from the music to discuss issues affecting the quality of life in our communities and to introduce to you individuals working to address those issues. Staying in contact, I'm London Mitchell. Autism. There's a lot we know about the condition, but there is still a lot we do not know. My guest for this installment is the executive director of the Autism Society of Northwest Ohio, Kate Schwartz. What causes autism? That's the big question. There's a lot of emerging theories on it, but in reality, nobody truly knows what is the actual causation of autism, and so, you know, they're looking at a genetic component, so it is, you know, whatever is changed in our society and whatever has, you know, made autism grow astronomically is whatever affects the body in a different way. So I have two kids on the spectrum, and, you know, both present very differently. And there's just a biological component to autism that, you know, based on gender, based on how, you know, autism is affecting each individual person. The saying is, and it's an old Mark Shore thing. If you met one person with autism, that's just it. You've met one person with autism. That's why it's a continuum of a spectrum, because autism affects everybody differently, but even if you have the same diagnosis in the same family with the same genetics, environmentally things change. So it just is a difference of how autism affects every single person with autism. And you know, you can go from, you know, high support needs, where, you know, somebody is nonverbal and is unable to feed themselves and unable to toilet to some level. You know, there's, there's a theory that, you know, Einstein had autism, and if you look at, you know, some of the, the people that are wickedly smart, you know, your Bill Gates and your Elon Musk and, you know, those kinds of people that truly, you know, are brilliant in what they do. And you know, but that's why it's the, the spectrum and the continuum. When I was in school, and much younger, I don't know if the term autism was discussed very much. I guess I would have to assume that it's been around almost forever. You were talking about Einstein. But we talk about it more. Is it more prevalent now, or are we just understanding it or now? I think it's a combination of things. I think that there is a, you know, early detection through our pediatricians. I think that there is an ability to, you know, fine tune that diagnostic tool. You know, it, but I do believe it is growing. You know, when, when my children were born and my mom said, you know, when, when she was in school that, you know, they would have been quote unquote, the quirky kids. We've also changed our entire society, you know, your, your people with, you know, high functioning autism or low need support autism used to work on a farm, used to go out and do things with their hands, used to be, you know, we, we had bigger families. So you didn't have a choice but to be social. You didn't have a choice but to, you know, kind of sit in a different box. Now we have, you know, less kids in a family. We have less socialization as time has gone on. We have more and more technology. We have changed everything about our lives in, in two generations. So I don't think that it is quote unquote over diagnosed. I think that it is getting to a point of pure representation of how many people are affected with autism. But also, I, I really, I dislike the term affected with autism because it's really just who they are. And so I think when you use the word affected by, I think it feels like a communicable disease or it feels like there's something wrong. But if we embrace who people are at their core and if we, you know, realize that there are more things that we have in common with those with autism versus not having things in common, I think it goes a really long way towards a more inclusive society. I am a great believer in support groups. And I know that as a, as a parent, when you get to diagnosis, hey, your child is on the spectrum. That's got to be really, really devastating news to a parent. How do you reach out to parents? What do you say to that new parent? And what would you recommend? So I always recommend that they create a tribe of people around them. I can tell you when my child was originally diagnosed at 18 months, that my best friend drove over from Chicago, picked me up in Toledo and we went to Cleveland and we had Mexican and margaritas. And I lovingly say when you get that Scarlet A diagnosis for your child that it feels overwhelming and what I didn't know at the time was that it didn't mean that my child wouldn't succeed. It didn't mean that my child was, you know, going to regress. It didn't mean that, it didn't mean that it was a death sentence line, it meant that we had to rethink how we went about teaching. It meant that we had to rethink how we introduced social skills and about how we needed to break down tasks in a way that was meaningful for my kids. And it wasn't that my kids were going to learn by asmosis or by watching. It meant that my children needed tasks broken down and it meant that I had to change the way that I talked to them. I remember one time, you know, we had a conversation about homework and I said, well, you don't have to eat the elephant in one bite and my kids started crying and, you know, I don't want to eat an elephant, so I had to stop talking and, you know, riddles. I had to, you know, use plain language and really think about what I was saying. But when parents come to us, what I was saying is, it's going to be okay. You don't know how your child is going to turn out yet. You don't know what successes they are going to have and it may look different than somebody who is, you know, quote, unquote, neurotypical, but the successes will still be there. And those successes are more meaningful because you've worked a little harder for them. When people don't think that their kid will graduate or people don't think that their child will talk or their people wait a lifetime to hear, I love you from sometimes from my kid with autism and sometimes you just need to rethink how I love you comes out. Sometimes it might be through writing or through an alternative, augmentative communication device. It might look a little different, but it's still there. I'm London Mitchell. We're talking with Kate Schwartz, the executive director of the Autism Society of Northwest Ohio, or as it's commonly called, ASNO. What do you say to the parent who is frightened, who believes I can't do this? I don't know what to do. I talk to all of those parents a lot. And usually we are, after diagnosis, we are one of the very first phone calls that, you know, parents make. And usually they, they call in tears and say, exactly that one, I don't know what to do. Okay, let's talk about it. Let's talk about it. This isn't rocket science. This isn't doom and gloom. This is, okay, let's have a conversation. Let's build a network around you. Let's build up through support groups, through phone calls, through online support groups, through just reaching out to friends and not necessarily isolating yourself, especially as a parent of a kiddo with a disability, that there's an entire world, I have an entire social network that I wouldn't have had unless my child had a disability. Because some of my very best friends, to this day, 16 years later, are the people that I've met in waiting rooms that rehab dynamics and people that I've met that have crossed my path who are on a similar journey. And so I truly tell parents, find your tribe, it is so critical. No shame, no shame in reaching out for support and asking for some understanding and for some help. Quite the opposite. It's more sad to me if you don't reach out. I will talk to you at 10 o'clock at night. My latest phone call was three in the morning and it was a friend who was at a bar who said I have a mom here who needs IP help. And we, although are not a crisis hotline, we desperately try to meet the needs of people where they are and when they are. And at the end of the day, there's no shame in reaching out. But there is a sadness and I think I can do this by myself and I feel like I have to do this by myself. Because I can tell you, I can't tell you how many parents have come into our spear and into our circle. It's not even a circle long, it's a you. Because there's always room at the end for that new mom to come in. There's always room for that new mom or dad to say, "Hannied help." But the sadness is the, "I'm embarrassed" or, "I got a phone call from a good friend who said, 'I can't tell anybody else's but my kid is wiping poo on walls.' And I've laughed and I was like, 'Yeah, yeah, my kid did it too.' It's gross. But here's how you handle that. You get a little cleaner, you wipe it down, you know, if it's stuck, then you put some kills on it and, you know, then you repaint and you move on. But there's no shame in this. There's no sadness in parenting our kiddos. There's just a different way to look at things and a different pathway to handle things. You're doing remarkable work and I know there are scores of parents that are so grateful that you're there and you have programs. Let's take a look at the calendar of events coming along for the Autism Society. You've got the big walk for Autism coming up later this month. We do the last Sunday of the month at 10 a.m. at Franklin Park Mall. If you would like a t-shirt, we just ask that you pre-register by the 13th. We are very lucky to partner with Franklin Park Mall yet again. The great part about having the walk at the mall is that it's indoors and we can control the weather and we can control the lighting and we can control the sound. It is an amazing pep rally for those with Autism. But rarely do we see a pep rally and excitement around our kiddos and so it's really important for us as the Autism Society to do that pep rally and to say, let's celebrate this. Let's make connections amongst each other, the joy and happiness and seeing the balloons and we always do a balloon arch and then we always take pictures and to see my favorite day, my favorite day is when Kurt Nelson sends me the role of all of these pictures. I go through all of them and I get a little emotional and I have tears in my eyes because of the joy, the pure joy of celebrating families and the celebration of each other and the celebration of Autism because again, it is just a difference in how we perceive the world but it doesn't have to be sad. Other activities might be coming up, Kate. So we do a parent support group at Green Options for Autism. That will be in November, we're currently setting the date. We also have a team group that meets once a month and they are doing their Halloween party and if somebody is interested in joining that group it is a closed Facebook group specifically for security reasons, a conversation with me and then we add you to the group so your kiddo can come and enjoy activities. And you can reach me anytime by cell phone at 419-490-0111 or email at executivedirector@asno.org to have a conversation about what's going on, how to get involved. We are currently looking for some new board members. We have some board members who have had some life changes and are ready to say thank you and we're hoping to recruit some new, amazing board members who want to get involved who want to help the organization. We've been around a long time, we have great brand recognition and you get to work with me and a little exuberant and a little extra better than guacamole and at the end of the day what we get to do is we get to help people and we get to take that crying mom or that crying dad who feels really overwhelmed and really hopeless but usually by the end of the conversation there's laughter, there's lividity and there's a light that shines that just and in all of these phone calls it's like thank you for just listening, thank you for listening. Kate Schwartz is the executive director of the Autism Society of Northwest Ohio. If you are the parent of a child on the autism spectrum or would like more information about autism logon to sno.org that's A-S-N-O.org. I'm London Mitchell inviting you to join us next week as we continue staying in contact. Previous episodes of staying in contact with London Mitchell are available on Apple Podcasts, Amazon Podcasts, Podbean, the Suite 419 app and London Mitchell dot news. [MUSIC PLAYING]