May 16, 2020

One Girl's Voice on Her Autistic Life

Amanda "Pand" Milo takes a personal journey to discuss what more we can do to accept those with autism.

One Girl's Voice on Her Autistic Life

Below is a transcription of an interview with Isabella Milo, a 17-year-old person with autism. Her parents, Lynn Milo and Ronald Milo, were also interviewed to further discuss Isabella’s journey and experience; their interview is transcribed below as well. These words are true to the words spoken to me by Isabella and her parents, brackets are included by myself to provide more information and context.

Getting to interview my own family for a project like this makes for a unique experience. I was able to come up with questions that fit Isabella and yes - my parents. I was nervous to have a formal interview about something so personal. It was an emotional experience.

I of course have lived through Isabella’s journey. We are only three years a part. I was very little when she was diagnosed. My mom and I have together discussed our experiences and our emotions surrounding Isabella’s journey. And Isabella has never been shy when discussing how she feels being autistic and what life is like for her. She is a big advocate for herself and takes every opportunity she can to educate others on autism.

I always tell people, the autism is often not what’s most difficult – it’s other people’s reaction and lack of acceptance that makes it difficult.

I believe there is one big message to take from doing these interviews: acceptance of those with a developmental disorder is crucial. All three of those I interviewed wanted people to practice acceptance and to realize that autism does not define the person who has it. The world has surely gotten more accepting, but when my sister was first diagnosed almost 17 years ago, the world was much less accepting and much less knowledgeable.

I still believe the world has a long way to go in practicing acceptance and recognizing autistic people as people and not just as their disorder. However, I am glad to see so many more opportunities for autistic people and so much more love and acceptance in the past ten years. I can only hope that continues.

A FAMILY'S JOURNEY WITH AUTISM

Interviewer (me): So if you’d like to begin you can introduce yourself

Isabella: Hi. My name is Isabella. I have autism. I like to go to Dave and Busters, I have a computer in my room that I sometimes play, I like to watch TV in my room.

Int.: So we’re going to start with the first question, okay?

Isabella: Okay!

Int.: When did you know that you are autistic?

Isabella: When mom told me. Mom told me that I lost everything when I was a kid. She told me they had to reteach me how to talk, reteach me how to walk, reteach me how to sit, reteach me how to eat. And I was shocked. I didn’t know I have autism when I was very little. And I was nervous and I thought people were going to laugh at me, make fun of me, try to hurt me.

Int.: How do you feel now about being autistic?

Isabella: I feel a little nervous still. Because, you never know, people could make fun of me because I’m different.

Int.: Has anyone made fun of you?

Isabella: No. Nobody has made fun of me.

Int,: Well, that’s a good thing. So being autistic, Isabella, do you feel different from other people?

Isabella: I do. I think I feel different because I act different and I have a para [a paraprofessional works and stays with her while she is in school], I’m in special education. I laugh sometimes when I eat.

Int.: What are some things you find difficult or have a hard time with, being autistic?

Isabella: The work in school. I have a hard time talking to others. I would go to social group to help me talk to other people because I was anti-social back then. Back then I didn’t really talk to people that much.

Int.: What about now, do you talk to people more now?

Isabella: Yeah.

Int.: How do you have a hard time with school, what’s hard with your school work?

Isabella: Tests and the regents. I have a hard time with the regents and I’m nervous and I say “what if I fail.” I get stressed with homework. I want everything to be perfect

Int.: Speaking about school, how do you feel being in a regular education school and taking regular education classes? [for clarification, she is in a 15:1 program so the classes are smaller, so she is in special education but she still has the same curriculum as non-special education students and she attends public school, not a specialized school. She also wanted me to ask this question; she came up with it herself].

Isabella: I feel like I’m like an immigrant because I’m trying to fit into their world and it’s like my anxiety gets in the way. Like, I take [a] culinary [class] and [a] music [class] and all that. That’s the one that regular education classes take. And like other autistic people, they take like trips and learning how to get a job or like go to school and they don’t know how to talk or be like in a District 75 class. But for me, it feels weird because most people are not autistic and like sometimes I’m quite active around people, regular people. And I feel like I’m an immigrant going to a school with a bunch of regular kids, trying to fit into their world, trying to fit into their shoes. But I’m not like those kids. I’m myself.

Int.: That’s a good thing, you should be like yourself.

Int.: We’ll wrap it up here – what do you want people to know about autism?

Isabella: I want them to know that it’s okay having it. You shouldn’t fear it. You should, like, don’t be scared of it. Be happy the way they are. And it’s okay for me to have it. Just don’t be scared.

Int.:  Is there anything else you want to say?

Isabella: I also want to say that kids like me who have autism. Be nice and be aware of it. Like think about it: how would you feel if you were different from other people? How would you feel if you were in their shoes?. That’s it!

Isabella’s Mother, Lynn, Interview:

Int.: You can introduce yourself if you want.

Lynn: Hi my name is Lynn. I’m Isabella’s mom.

Int.: We’ll start with the first question. At what point or how did you know that Isabella needed some form of help? Outside of just being a baby?

Lynn: Because after she was about 19 or 20 months, she started to regress which means she lost all her milestones. She stopped talking, and everything else. She had a hard time walking. So she regressed and lost it all. She was sitting on my lap and pointing to body parts on my face, she was pointing to my eyes, nose. She couldn’t do that anymore. And so I took her to a pediatrician and I told her that I’d like to get her tested because she lost everything. So they set it up and she got tested. She was diagnosed with, I think it was called at the time… I’m forgetting… PTNOS, that’s what they called it. They didn’t diagnosis her with autism at the time. And that was that.

Int.:  Do you know what age she was diagnosed?

Lynn: So she was about 20 months, so she was like two and half about.

Int.: And what was the journey like of realizing there was some kind of help she needed, and then going through the process of diagnosis, and all of that? What was that process like for you?

Lynn: You mean how did I feel when I found out or do you want to know what it was like getting her the help?

Int.: What was it like getting her the help but also how did you feel knowing that your child needed some kind of help and then knowing there was a diagnosis?

Lynn: Well, getting the diagnosis was heart breaking. I mean I cried and cried. I mean it was heart breaking for her because I knew her life wasn’t going to be easy. We didn’t know if she would be able to talk again or walk again, we didn’t know if she’d be able to hold a job or get married. And with all the research back then, it was basically saying that they wouldn’t be able to function in society. This was 17 years ago, so there’s a lot more information now and now we know that autistic people can get a job and go on interviews and more people are employing them and all that. But back then we thought, they were telling you, “well she’ll probably never be able to get married and have kids or get a job.” So it was like a loss for your child’s future, so it was very heart breaking. But my husband and I decided that our goal was to make sure that she was happy and that’s all we cared about. And we thought if we could make her happy then we really won. And we were just going to get her the help she needed. And we did.

Int.: So going off of that, what were the early years like with her? What was it like sitting in on the different types of therapy she needed?

Lynn: When she was diagnosed she had therapy. When she first had therapy, she had 40 hours a week of therapy. So that’s like a full time job right, at like two and a half. She had to have speech and oral speech because she wasn’t able to chew on one of her sides. So it was basically like if somebody had a stroke, her whole right side was weak. So her arm, her right leg, and her mouth so she couldn’t chew on that side. So she had to learn to chew to eat, so she couldn’t eat. We had to teach her how to chew. She ate very little in the beginning. Then she had her speech [therapy] to learn how to talk and say words. Which took her a year to say her first word and her first word was bubbles, by the way, because she wanted the bubbles that the speech therapist was putting in the air. So her first word was bubbles. And she had ABA therapy which is where they teach her how to sit in a chair, they had to teach her shapes and numbers and all that kind of stuff. But it was very heartbreaking because at first they don’t let you sit in in the ABA therapy. So I would be upstairs and she would be downstairs and I would hear my daughter screaming because they’re forcing her in a chair and I couldn’t help her. So that was really hard for me, I would cry in my room, that was heart breaking. But Bella’s a feisty thing and she worked really hard. She was a hard worker back then as a kid. A lot of credit goes to her with that one. But it was rough, it was rough, it was a lot. But I sat in with her speech therapy and I sat in when she had OT. OT was her motor skills for her hands. Physical therapy she had and I sat in with that also.

Int.: Fast forwarding to her age now, which is the high school age, how is it with her being in high school dealing with the education system in regards to getting her the services she needs?

Lynn: Well I have to say it’s been a fight her whole life to get her, even since she had home services, I always had to fight for her to get what she needed and what was right for her. It was always a fight and as a parent I would say make sure to know your rights. It’s very important to research and google your rights as a parent and have as much information as you can when you go into these meetings with the school or with people that are giving services in the early years because the more informed you are the more you can help your child. High school is a little.. it’s rough. They’re a lot better now then they used to, I have to say. I feel bad for the parents who don’t have the information and don’t know because they don’t know to go up and say “this isn’t right, you need to do this for my child.” They don’t know how to fight for what you need. And it’s a little difficult because they don’t really understand autism. They don’t really know. You know they have paras and the paras are great, and they try their best but they don’t really know. They take a six week course, they don’t really know what it’s like. So my thing is I always try to inform and help them and explain to them how Bella is because every child with autism is different and girls are a lot different then boys. And there’s not a lot of research done on girls so it makes it even more frustrating to deal with the education system that way.

Int.: Going off of that again, what do you notice she struggles with a lot not just being autistic but also being a high school student and being that age and being autistic?

Lynn: The thing is, high school girls, ask any parent, are a nightmare. I love my daughters to death but they are a nightmare, you know? Because they have a lot of social anxiety  and everybody hates high school because you’re at the age where you feel you’re old enough and you should be done with school. Nobody likes it. So she has those normal, teenage high school angst. But to her it’s magnified because of her autism. And her problem is, which is true with girls with autism and not boys so much, they are desperate to have friends and want to fit in where with boys it’s not so much. And she’s very aware. She wants to fit in socially, she wants to be like everyone else, she wants to be like all the other girls, she wants to fit in so bad. That seems to be what upsets her the most in high school is that she wants to fit in. She always wants to be like everybody else though I tell her she’s great the way she is and nobody should want to be like everyone else they should be who they are.

Int.: That makes sense for any high school student but you know adding that onto it. And so what was as a mom the most difficult part for you going through all of this and helping her and all of that?

Lynn: The most difficult part?

Int.: Or the most emotional, the hardest?

Lynn: I have to say feeling like… feeling like sometimes I’ve failed her. A lot of guilt that I’m not doing enough, I’m never doing enough, never helping enough. And when sometimes I don’t get something right. You always have to be on, you always have to be alert, you always have to be thinking of new things to help her. Your brain is always working on trying new things to help them and sometimes when I fall short. That’s hard for me, feeling like I didn’t help her enough or “oh man I messed up there, if I would have said this or I would have did that she wouldn’t have been upset for three hours.” Like that kind of thing, that guilt that I feel bad I did something wrong. That’s hard for me because I don’t want her to feel upset. And all through there was different periods that were difficult. I mean there was difficulty in therapy with her. The first years were really hard like I didn’t know if she’ll ever speak again or if she can go to school or go to regular education or be in a specialized.. I didn’t know what was going to happen. My main thing was I wasn’t sure if she would be able to tell me how she felt or have happiness or joy and she can and that’s the best thing. So I’m going to switch that around on you and say that the best thing is that she can tell me how she feels, she can tell me what she wants, she has things she enjoys in life. And that’s all I really wanted for her. So I’m happy in that way.

Int.: Wrapping it up for you, is there anything else you want to discuss or anything else you want people to know about autism or about Isabella?

Lynn: Well, about autism, there’s a lot more awareness now when back when she was little people used to think it’s contagious which it’s not. Just for people to understand that she’s like every other teenage girl. She likes to go shopping and out to eat and she likes to listen to her music and be on her phone an texting friends. So you know, she’s like every other teenage girl. And she has feelings like everybody else. So people don’t understand that, they feel the same things everybody else feels. They have sadness and joy and hurt and guilt and all that stuff. That everybody else feels. Just their brain works differently than other people and they might have a hard time socially or things might upset them more than they would somebody else or things that wouldn’t upset somebody normally would upset her. And Bell, she’s the best person I’ve ever met. She’s just the sweetest heart, the best person. She will stick up for anyone, she is there for everyone. She’s just a great girl, although she is too hard on herself. I wish she wasn’t but so is my other daughter. I love her very much.

Isabella’s Father, Ronald, Interview:

Int.: You can introduce yourself if you’d like.

Ronald: I’m Ronald, Isabella’s father.

Int.: We’ll start with the first question. At what point or how did you know that Isabella needed some kind of help?

Ronald: When she was little and she wouldn’t move regarding noises around her.

Int.: When was she diagnosed?

Ronald: About between a year and a half and two years.

Int: What was that journey like, getting her help and getting her diagnosed, how was that for you? How did you feel once you found out?

Ronald: Finding out was devastating. I couldn’t talk for a couple of days. Getting the help seemed to alleviate some of the stress because at least we were going in the right direction. It was very frustrating in the beginning trying to get the right people to help and getting them into the house and see if they actually work with Bella. So it was good to start therapy but it was extremely crushing to find out that she was autistic.

Int.: And so what were the early years like with her? What was it like putting her through therapy and that kind of thing?

Ronald: Very stressful in the early years with the therapy. Because you were hoping something would come from it and sometimes there would be strides and sometimes there wouldn’t be any strides. And it was tough to see down the road how she would be better.

Int.: And so fast forwarding, how is it at her age in high school dealing with the education system in regards to getting her the services she needs?

Ronald: Actually she’s been very fortunate and she’s had some really good teachers along the way. It seems that junior high was maybe more in tune with what she needed than high school is. But I’m very fortunate in where she is education wise. I never thought she’d be a student with a 90 average.

Int.: What struggles have you seen her go through being autistic throughout the years?

Ronald: Some social. Being one of the very few girls in her class and not having friends. Mostly in a class full of boys, it’s only been recently that she has a number of girls with her in class. That and just the ability to socialize. She’s come a long way in learning how to start a conversation and make eye contact.

Int.: And what were some symptoms you noticed early on with her?

Ronald: How early?

Int.: Like when she was little, kind of like, right after diagnosis or during the diagnosis process.

Ronald: Her speech was a struggle, her ability to climb up a couch. Everything she had was delayed and it wasn’t just her being her and marching to a different beat, it was she didn’t have the ability to do what other children were doing at that age.

Int.: As a parent, what was the most difficult part for you dealing with the fac that she is autistic and going through that whole journey of helping her and getting her the help she needs?

Ronald: You want it to be fixed right away but it’s not, it’s an extremely long journey. Which is tough to see in the beginning. And it just takes it’s toll on the family. It’s heart breaking to see her struggle when you’d like to see her get better and be like other kids and enjoy things like other kids do. Luckily now, she does have a lot of enjoyment in life.

Int.: That’s good. And so just wrapping it up, is there anything else you want to discuss or anything else you want people to know about autism or about Isabella?

Ronald: Just that autistic children are like every other kid. They want to have fun, they want to laugh. They want to see superheroes, they want to go to the movies. They still want to do, they just may not feel great in a social setting. So just have patience.

Amanda "Pand" Milo is a sophomore working on her Bachelor's in English with Creative Writing and Literature and Media concentrations. She loves to read and write but also knit in her spare time. Pand plans to go into literary publishing after finishing her bachelor’s degree.