My Life With Autism

What will life look like for my autistic child?It’s a fear every parent has. In this episode, we check in on Ethan Willform, a 19-year-old thriving as an adult with autism. After years of treatment, he has learned valuable skills that help him navigate a neurotypical world. We even hear some of the music he wrote and produced.Ethan is a great guy, with a great story of inspiration and normalcy – whatever “normal” means.

Gene 

What will life look like for my autistic child? That, in some ways, is the most important question that parents have. Well, today we’re talking to 19-year-old Ethan about what his life looks like living with autism. I think you’re going to love Ethan and his story about his journey with his mom and his autism. Ethan has many talents, including music. In fact, he wrote, produced and performed the music on today’s episode. This is An Introduction to Autism. A compassionate, evidence-based series that provides solid information, guidance, and hope. You’ll learn about the signs your child might have autism, and how early diagnosis and treatments lead to the best outcome. I’m your host, Gene Gates, and this series is produced by Dr. Jane Howard and Coleen Sparkman from Therapeutic Pathways

Ethan, welcome to the show. I want to start with asking you, how do you explain to people that you have autism? 

Ethan

Honestly, I never bring it up. I guess until I really trust someone. I guess you never really realize until someone tells you that you are. And with that comes a lot of negative, I don’t want to say judged. But in a sense, you kind of get looked at different. In my case, as someone who has always done things that never let that define me.

Gene

Do you have any characteristics that might lead you to tell somebody, “Oh yeah, I’m on the spectrum”? 

Ethan

Yeah, of course, I had a harder time communicating, being a bit awkward at times, or just being a bit like seeing the thing at the wrong time. When I was younger, only knew three words, like mom juice, and wherever I was trying to point out. And just being able to communicate, it’s really hard not going to lie. I don’t really know how to compare myself to, quote on quote, a normal person. 

Gene 

I assume now at 19. It’s not as hard to communicate. Is that true?  

Ethan

Yeah.

Gene 

You and I are talking and there’s nothing about this conversation that would lead me to wonder if you’re on the spectrum. You have this great rich voice. We’re maintaining great eye contact. There’s nothing that would make me think, “ wow, this guy’s probably on the spectrum”.  Because you said it was really difficult. It’s hard to learn how to communicate. 

Ethan

It’s hard because you learn how to being with Coleen and speech, learning all this speech stuff. It was just difficult because I struggle with maintaining eye contact. Like It’s hard to even try to keep a conversation. I’m always thinking about like, you know how when you play chess, you think like 20 moves ahead? 

Gene

Yeah.

Ethan

Exactly what’s going through my head. I think like if I can’t say the wrong thing, or not saying “um” a lot or meeting your voice, or eye contact, just being able to interpret information. 

Gene 

And these are all things that you learn?

Ethan

Yeah, and I guess I always had a struggle with this. But last year, end of my first semester in college, I had this professor. She actually put it into words. “If you’re able to interpret information, you have all the playing cards. In a sense of what to say in a conversation, of what a book is telling you, of what someone is telling you, of what the situation is at hand”. Like let’s say, for example, if I was a radiologist, or a doctor, and I have all these scans. Once you’re able to understand what you’re reading, then you’re able to make a decision based on that. And you’re able to calculate the best possible outcome. Although I just learned that last year. I should have learned that early on. Like in schools, that would have helped so much, because I didn’t have all the playing cards. I’m using cards as a metaphor. Just throughout time, like you get this other card, and you get this other card. And altogether, once I figured out, I have a good stack of cards, then I’m able to use that and be able to play the game. 

Gene 

What I think I hear you saying Ethan, is there are several things like let’s say maintaining eye contact when you have a conversation. For the majority of people, that is something that feels like they already know that that’s intuitive. In your case, that’s not something that you already knew. That’s something you had to learn. That’s something you had to remember. That’s something you had to work to make as part of your routine. It’s something that even when it was difficult, you had to force yourself to do it. And so now you maintain eye contact. But none of that was intuitive in nature. All of that was learned through practice and through hard work. Did I say that right?

Ethan

Yeah, it was just something that I had to do myself. I want to be the best communicator that I can be. Because I feel like I have good ideas and I feel like I want to be able to communicate better for myself. People, I guess have different thresholds as to which offends them and what not. Once you’re, I guess cool with someone, you’re able to let that slip a little bit. But then if you slip too far, then it’s going to be bad news. 

Gene

Yeah, you were diagnosed around 18 months. So, your parents were really paying attention to your development. And they obviously got some intervention pretty early and got some tools to help you pretty early. You know like you said, you don’t want it to be defined by autism, but I’d love to know some things that maybe we should know about autism that you think are misunderstood by people.

Ethan

Yeah, I actually found one of those things last night from a friend. So, I was telling him I was doing this. And they’re like, what the heck, this is like a huge bomb, you just dropped.

Gene 

Mean that you’re on the spectrum? 

Ethan

Yeah.

Gene 

They had no idea that you were.

Ethan

No. And then one of my friends were saying, “oh well, there’s people who are more severe or more”, I get what they were saying. I thought it is like levels not in the sense, like someone’s at a higher level. But just someone who hasn’t figured out their next step. And that’s not anyone’s fault. It’s your own race. In a sense. It’s not a disease. I’m not sick. I’m a regular person. Another thing is that I’ve learned that there’s people who live hugely successful lives. Whatever they define their success to be, that will never tell you they’re on it, come out about it. They will never even mention it. And I feel like sometimes I’m one of those people. I don’t want to say I run away from it. But it’s been so I don’t even know that I know. That’s what separates me, I guess from a regular kid. And when I released that video in high school, I had about 300 views that night. 

Gene 

Okay, so tell me about this video. I don’t know about this video.

Ethan

Oh, I apologize. So, in my junior year of high school, the district was involved in helping students out. And they were saying that they were putting autism awareness video together. Me who hasn’t really told much people, if any at all. I don’t really think I told any of my school friends. The people in the district, we went through this whole idea. They’re like, you can direct your own video for the Awareness Month. We’re just going to sprinkle it in there. Nothing really too major. It’s like a huge step in your life. I don’t want to say accepting. I have to put into words how I feel. I guess I never really had an opportunity to do that. And I directed the video. I planned out. This video is actually a really successful video, I’d say. And so, when I uploaded it, I shared it. I was like, I just made this video for people. If anyone wants to notice, please share. Got to like 300 views that night. People were calling me, people were messaging me. Like, “oh my God, I didn’t know this”. And I was like, I must be doing something right. So, in the classroom, where they were giving the presentation. They’re like, Autism awareness. And then the main part, the meat of the presentation is live video. Because this one lady presented to me that my video is just going to be sprinkled in there. It was something little. She had this big thing planned, I guess right? But in real life, it was just my video. And then I think the next week, it got to a 1000. It just resonated well. And that was a huge acceptance point in my life. Like I’m accepting myself a bit. Not like I didn’t but it’s like another part of myself who I never thought I was.

Gene

How do people react both positive and negative? There are always trolls. So, you must have got some negative as well as some positive feedback.

Ethan

Surprisingly, no. In school, I always played sports, I was nice to everyone. Like I was just a good person. Everyone just had something nice to say like, “Hey, I’m dealing with this”. People were telling me about their lives, their family members that they’re doing with it. There are people that had some misconceptions that I had to tell like “ oh, no that’s not really what it’s like”. 

Gene 

Give me some examples of misconceptions.

Ethan

I guess someone who might think it’s like a disease. It doesn’t really offend me, but it might be offensive to someone else.

Gene 

Did you ever have moments when you were really young, where your autism was really bad and you had trouble?

Ethan

Of course, like having meltdowns. Meltdowns are a huge issue when I was young. I used to just express how I felt all the time.

Gene 

What would a meltdown look like? I don’t know what that means.

Ethan

I guess let me define it a bit more. When I was younger, I would cry, and I would just shut myself out. Just mentally, like I’m done, quit. I’d leave the room. You have to, I guess live through it in order to be able to be better. 

Gene 

That sounds really hard though Ethan, to go through this. 

Ethan

Really hard. Yes. I feel like it’s just my life and I don’t really ever complain or talk about it.

Gene 

You are older, do you not have those same challenges that you had when you were younger?  

Ethan

I feel like the challenges are a bit different. Being able to be in a room with a lot of people was very hard. The hard part is just telling my mind, I’m doing this. And I could physically be there. But be actively listening. Probably not. Being in a college class was kind of hard in a sense.  

Gene 

Because you really have to pay attention be in the moment earlier. And I think this is a great description. You look at so many things like you’re playing chess in your mind. Its 20 moves ahead of your life. And in college, you really have to be present. How do you do that?

Ethan

I’ll say, instead of 20. I go 10 moves. No, I’m kidding. For example, I get very anxious, if the teacher were to call on me. I know the answer. I can’t say it. I guess, in a sense, it’s like putting my mind to do it. Like I have to tune your radio or something like a certain channel, I have to do this. I just have to understand what it’s like to feel nervous. I have to understand, like, I have to put myself out there. That was one thing that my mom always emphasizes. 

Gene 

You think you have a lot of anxiety? Do you know what anxiety is?

Ethan

I feel I do. I feel like at this point, I have to work on my anxiety a lot. And I feel like with the lockdown and stuff like this. It’s not as an excuse, but it’s a bit harder. I just think about like, I have to be back with people, I have to do this, I have to do that. I feel like my anxiety has put hand in hand with everything.

Gene 

That makes sense, because so many of us, myself included, are dealing with anxiety at different levels at different times. We all have levels of this OCD characteristic. I think these are all part of our family tree. And different times has those different issues. Sort of create new or different challenges. I’m trying to think back to your mom. You’re an 18 month old, they’re noticing that you’re developing just maybe a little bit differently than the other kids that are in the neighborhood. And they start to go, I think something’s different. I don’t know what it is. But I think for a lot of people that are listening to this podcast series, this is for young parents’ child who’s either recently diagnosed or they’re still trying to figure out what’s going on. So, they’re trying to discover Autism as one of those possibilities. So, obviously the good news is I’m looking at you. You’re 19 years old, you’re going to college, you’re pretty fly. There’s no way to know that you’re even on the spectrum, you’re an awesome guy. So, I wonder what kind of advice could you give to a parent who is trying to discover if their child is learning different? Or if they’re going through a different experience than some of the other kids around them? 

Ethan

I guess this is more of a question for my mom. But just some things I’ve noticed with my mom. I think one of the deciding factors my mom told me was they wanted me to live a toy car. And I ended up getting frustrated and throwing the car at the doctor. So, my mom was like, “yeah okay this happened, let me learn about it”.  And she put me in a position to force myself to do a lot of things. Because she said that I could either be very complacent. I could just sit home and play video games all day, or actually play a sport. I feel like she more emphasized me to be more social. And she emphasized me to be more willing to do things. I guess for a young mother listening to this, I guess just one thing. Everyone’s different in a sense, but I don’t want to say force your child to do things. I’m not the one to give parenting advice, I don’t have a child. But just make sure that they have an outlet or avenue to do something that is connecting with other people. You never know what connections your child could build with another person.  

Gene 

You talked about sports, but maybe in another kid’s case, it could be acting. Or it could be the game of chess. But some kind of activity somewhere to put their focus.

Ethan

Yeah. My mom put us in a lot of stuff. I guess, Boy Scouts. Anything that allows your child to just be themselves. Like my mom kind of like, “you’re going to practice”. Good thing, I was a decent build. I was pretty taller than the kids. 

Gene 

You talk about this moment with the doctor where he wants you to move the car and eventually you get so frustrated you throw it at him. Did you have the similar kind of things as your mom’s pushing you to go to practice for sports?

Ethan

Of course. We have arguments all the time about that. Growing up, there’s so many arguments that we had about, like baseball. I did not want to play baseball at all.  I just felt like it wasn’t for me. But I was pretty good at it. And like she’ll drag me out of bed, I was like in eighth grade. So, the same height, I’m 6.4 now. I don’t think that she’d have an easier time dragging out of bed. But there were times where I wanted to do other things, and mom was like “No, you’re doing this”. 

Gene 

How in the world did your mom know when you’re saying no to baseball? That she’s going to force you to do it and you’re going to be in the end, you’re going to be happy you did. How do you possibly know?

Ethan

You have to understand the type of person she is. There are a lot of people that would say, “Oh, I have to point at a book”. Going back to me only having three words, If I wanted to communicate, I’d have to carry this book. “Oh, point at what you want”. My mom was like, “ No, he’s talking at home, he’s doing this, he has ideas, he’s able to process things, he’s able to explain, not necessarily in terms of words, but he’s able to express his ideas. And I guess she kind of put me in hard mode, not going to lie. It was just one of those things where I don’t want the easy route for him. He needs to be put in this hard mode. 

Gene 

What would you say about your mom? Sounds like you really were blessed with a great mom who was patient and not afraid of trial and error to figure things out. How would you describe her?

Ethan

I am very thankful that she’s the person she is. I feel like in our life like my dad too, I don’t want to say pessimistic but exact opposite of a mom in terms of when it comes to me. He didn’t really understand, my mom didn’t either. Like there’s going to be parents, there’s going to be people who think outside, like I don’t want anyone to make fun of him. And that’s a form of protection. Like I don’t want my son or my daughter even to be in a position where they are getting targeted. They probably witnessed that growing up special need’s student getting bullied. They see autism, that special needs. I don’t want my son to be picked on or bullied. Because he’s not that type of person. I guess for the parents. It all goes to who you listen to. You could listen to someone who’s telling you how to parent your child. But, at the end of the day it’s your child. I’m not a parent at all, but I feel like there’s some parents who probably would just know.

Gene

Be sure and tell your mother that I think she did an incredible job of helping you on your path. And I hope one day to meet her too.

Ethan  

Thank you. It means a lot. 

Gene  

That’s 19-year-old Ethan. This is An Introduction to Autism. A show for parents who are wondering if their child has autism. If you want to stay in touch with best practices to give your child their fullest life, just subscribe to this podcast right now. You’ll also find great resources in the show notes and at http://www.tpathways.org/ . The show was produced by Dr. Jane Howard and Coleen Sparkman from Therapeutic Pathways. And the music for today’s episode was written, produced, and performed by Ethan. 

Until next time, I’m Gene Gates.