autism speaks: transcript
ACTOR: I want to love you. I just don’t know how. Because when are parents are gone. I’ll be the only person who can take care of you.
YVONNE: This is Mouthful and I am Yvonne Latty. Every week I will be having a complicated conversation with a young person about the things that matter to them, things they have written about and shared on stages across the city. And then we will go out into the community and talk to teens, adults, experts anyone who can broaden the conversation.
Today’s episode is about autism.
What is autism?
Why don’t we ask a doctor!
DR. KATE WALLIS: Autism is a disorder that consists of deficits in social communication, so both the way that children and adults use language as well as use gestures, body language to communicate and the way they interact in a social way with people and the world around them. It also consists of differences in behaviors, and a lot of those behaviors are what we call restricted or repetitive in a lot of ways so this may be differences in how they sense the world around them or differences in some of their motor movements or in their speech patterns. And those two components together comprise autism spectrum disorder.
YVONNE: That’s Dr. Kate Wallis, she’s our guest on this episode, and we’ll get back to her in a bit. Thanks for the assist, Kate!
So: autism is short for Autism Spectrum Disorder, which means that it’s different for every affected person.
1 in 68 children, mostly boys, are affected. If you think about it, that’s 2 kids in an average kindergarten grade. And the rate of diagnosis is growing.
Every affected person is different, which means that every experience with autism is different.
Lisa Gardner's brother is autistic.
LISA: Yeah so my older brother he’s four years older than me, is on the autistic spectrum…
YVONNE: That’s Lisa. For Lisa, growing up with her brother was a challenge. Lisa’s perspective of autism is one you don’t hear or read much about in pamphlets or autism education websites. Her view is a raw, gut wrenching experience of growing up with a severely autistic big brother.
LISA: Growing up I definitely dealt with a lot of taking more responsibility in my family, um and definitely had a different experience with my sibling than some of my peers did, and I wrote the monologue at a time when my brother was about to leave our home to go a school for people on the spectrum and so he was going to be leaving basically indefinitely so it was kind of about saying goodbye and what that meant to me at that time.
YVONNE: Lisa wrote “Autism Speaks” in 2013 while she was a student at Lower Merion High School. I should mention that the monologue and this episode are not affiliated with the advocacy group of the same name.
Let’s listen to the monologue performed by Dana Kreitz.
ACTOR: I’m happy to see you go. I’m happy to see you go. You’re leaving today, and I don’t know what to feel, or how to say it to you.
I’m sorry? I’m sorry that you’re autistic, and I’m sorry that your life will never be as good as mine, but you can’t take mine away from me.
You can’t take my life away from me. You can’t complain when my friends come over that they’re too loud, but wake me up all night. You have to learn that they’re not your parents, they’re our parents. You’re an adult; stop acting like a child. You have to learn that the world doesn’t revolve around you. Because not everyone’s like Mom and Dad and me. People will try to take advantage of you.
And I don’t want that for you.
I just want you to be a normal big brother; to care for me, and protect me. I want my house to be full of laughter, instead of yelling. I want to be happy. I don’t want you to hold me back. I don’t want to have to hide my feelings. I don't want to love you when I don’t like you, but it's what I'm supposed to do. I'm supposed to be the supportive sister that holds the family together, when really all I want to do is tear it apart.
I'm selfish, I already knew that. You already knew that. And I guess this makes me a horrible person, someone I don’t want to be. I just want someone to tell me it's all right. I want you to say it's okay that I feel this way. But you can’t tell me. You can’t help me.
Do you love me? Are you capable of love? How can I love you when I can’t know if you love me? And how do you expect me to understand you when you can’t explain your feelings? I want to love you. I just don’t know how. I need to know how. Because when our parents are gone, I'll be the only person who can take care of you. Can I get a thank you? Some kind of acknowledgement that you understand what we’ve sacrificed for you? I guess that’s not possible.
Still, you’re a part of me, and I’m a part of you. You’ve made me who I am. You’ve watched me grow. Can’t I do the same for you? And maybe one day I'll be able to stop pretending. I will love you.
YVONNE: Producer Mitchell Bloom and I spoke with Lisa via Skype. She’s currently a student at Penn State, studying mechanical engineering. Growing up, Lisa struggled with the challenge of dealing with a sibling who she could not communicate with.
LISA: Definitely we didn’t really understand each other well. It’s a different experience for everyone because the spectrum is so broad I don’t want to generalize my experiences for everybody, um, but uh it was definitely difficult on my parents which strengthened my experience with them a lot and became an interesting thing as I became older to talk to them and realize that they didn’t sign up for this either and they didn’t really know what they were, no parent knows what they’re doing when they have a kid,. And since then there have been a lot more innovations and ideas and therapies and things like that that have come out, there’s been more government support and so they kind of pioneers in raising a child with special needs so yeah it was an interesting experience to be a part of, but also a very challenging one and then I think you can see that in the monologue.
YVONNE: And despite their separation and time, Lisa still struggles with her relationship with her brother.
LISA: Currently I don’t really have much of a relationship with him because I don’t live at home and he doesn’t live at home either. So I only really see him on family holidays. And it’s been a little bit of a relief in some ways to be able to focus on myself and I’m in school and I’m a very ambitious person so I’m trying to get a lot of cool opportunities and things but I always kind of know that he’s there and at some point, I think I mentioned this in the monologue, I’m going to be the only one left to take care of him. So there’s this very, like I don’t really see him right now in my present but I know that he’s there especially there for the future.
YVONNE: Lisa’s brother is currently doing well at his school.
LISA: So he’s currently at the same school. But he is living with a roommate and somebody comes from that school and checks up on him everyday to make sure that he’s taking his medicines that he’s going to work. He’s working with a janitor at night and he has a job coach who goes with him to help him do the job. And he also volunteers at a hospital.
YVONNE: Lisa is trying to work on their relationship even though she does not see him much.
LISA: Every time I try to see him I try to get a little bit better at handling it because I just got a point where it was just really hard to even just talk to him and so I just wouldn’t. And that’s kind of why I wanted to write the monologue because there was just so much that I wasn’t saying because I knew that he either wouldn’t understand it or like well first off he definitely wouldn’t understand it, but it was stuff that I didn’t want my parents to hear or I was kind of ashamed to admit. And I still have a lot of unresolved feelings but every time that I see him, now that I know that I see him for shorter periods of time, I try every time to be a little bit more accepting, to be a little bit better in my interactions with him. Um I’m not always better at it, but I try.
YVONNE: When Lisa’s parents saw her monologue performed, they were moved.
LISA: Um my dad cried. I think that um they were really supportive of it. My parents have really both always demanded of me that I try to be more accepting because I should be. And everyone should be. But you can’t always do what you’re supposed to do I guess. When it comes to feelings.
YVONNE: And, Lisa never wanted to say those words, but she needed to.
LISA: It was good to hear it because I never wanted to say the words, but having someone else say them was just kind of what I needed. And to also express them in the way that I would’ve expressed them was really really powerful and um yeah I was really really glad that I got to see it, the entire process I used to joke that it was like a therapy session every time that I went um to work on it, but it was really, I hadn’t really thought about it too much um because I try to shut down thoughts like that but to really just own up to it, this is how I feel and I’m trying to get better and I’m trying to change I think did help me get some closure in that part of my life.
YVONNE: Still, Lisa’s relationship with her brother has shaped who she is. She’s studying mechanical engineering because she’s interested in medical technologies and using it to help people, like her brother.
LISA: I’m really interested in social good. And I think a lot of people go and they say I’m going into mechanical engineering because I want to build a place and I personally have no desire to build a plane. I’m really interested in technologies that help people, and I’m sure that some of that is influenced by the experience I had growing up with my brother, but I’m really interested in medical technologies and I’m also really interested in designing things for human use and kind of understanding who your user is going to be and then building a product around them instead of building a product and then saying okay now learn how to use it. How do we with all these new technologies build things that people can intuitively use.
YVONNE: Our next stop was a conversation with Dr. Kate Wallis, a pediatrician who specializes in autism.
YVONNE: So in its extreme state what does autism look like?
DR. KATE WALLIS: So, every, we say in the autism community, that if you meet one child with autism, you’ve met one child with autism, because given that it is a spectrum there is a wide variety of severities that we can observe in that individual’s experience. This can be everything from really being non-verbal and not being able to talk, being very socially isolated to just having some differences in how they perceive the world, what we would call some quirks potentially.
YVONNE: What does having a child on the spectrum do to a family?
DR. KATE WALLIS: So we love to talk about the strengths of different children. Every child that I see with autism brings special strengths and qualities and love and affection to their families. I think there’s a misperception out there that children with autism don’t learn to love don’t have affection don’t show emotion, and that’s really false, um but there are challenges and struggles and I think that this monologue really speaks to not only what having a child with autism means to parents but what it means to siblings, and I think that’s a really important perspective for me as a clinician to to take into account whenever I interact with these families.
YVONNE: In the monologue, the it’s basically written by a sister, a sister of someone who has autism and she’s clearly struggling a lot with intimacy, closeness, sort of typical sibling relationships is that something that you see?
DR. KATE WALLIS: Again, because there’s a spectrum and a variety of severities, the individual she’s describing sounds like he has a lot more difficulties with engagement, and that is something that we see in some of the populations and I’m sure she often have ambivalent feelings about this child, it’s important to recall that every child has strengths and trying to see those, but it can be really challenging because as part of the difficulties with social communication there are differences with how these relationships form and how individuals with autism interact with their family members and those around them. And that can be really really challenging for for family members.
YVONNE: Do you have any advice for siblings who might feel that way because it does seem like if you have a child who's on the spectrum that it is going to take a lot of energy from the parents in trying to figure out what’s the best course of action to give that child a happy life. But the sibling can kind of fall to the wayside. Do you have any advice for these kids?
DR. KATE WALLIS: It can be really hard and siblings can often feel a real sense from a young age of responsibility for even protecting that child who has an autism spectrum disorder. I think it’s really important like I had mentioned to recall the strengths of every child and to really try to see them for what they can contribute and to build on those relationships. So often children with autism may have a particular interest and trying to share in that interest as opposed to seeing that as just a negative but it really is a time consuming process to really to find those areas of bonding for siblings.
YVONNE: And if you have a child that has autism, what can be done to make them have a good life?
DR. KATE WALLIS: So, we talk about early intervention and early therapy so the earlier that we identify the condition the earlier that we intervene and provide therapy to work on some of the foundational skills that are more challenging, the better the outcome. So we’re working on things that may be difficult for each individual child such as engaging in eye contact, and eye contact is something that’s really foundational and that allows them to learn from their environment um working on their engagement with others so that they can really learn from the teachers and the individuals around them, but we know that kids can have really good outcomes and we expect all children that we make a diagnosis of autism in to make progress over time.
MITCHELL: Um, the writer when we spoke to her last week mentioned and I think I certainly notice it as someone outside of the community I guess is that a fair thing to say of an increased awareness around autism and the prevalence of a community. Can you talk a little bit about that? Of how autism awareness has increased over the last couple of years, is that the case?
DR. KATE WALLIS: Yeah, autism awareness I think has really increased, which I think has been a fantastic thing. I first became interested in autism when I was in high school about 15 years ago and since that time the awareness the understanding has really increased. I think this is crucial for families because I think previous to this they would bring their child who is affected with autism out to a place like a playground and families, other families, would potentially give them bad looks and comment on their parenting, um when a child would have a difficulty like a tantrum or something um and now I think there’s a lot more understanding for the differences and difficulties that these children experience. We’re still not there all the way there are still a lot of judgment of families but I think that this is really improved in the last 15 years as I’ve observed it and I think this has been really crucial to creating that sense of community, understanding. In addition what’s gone along with that is an increase in funding to try to understand the condition to try to figure out treatments for the condition and so research has really focused on all of those things and I think the results from this increase understanding goes hand in hand.
YVONNE: Do you ever suggest that the families ever seek therapy?
DR. KATE WALLIS: Yeah, we actually know and we know a lot more about parents and in particular mothers that the rate of clinical depression is actually a lot higher in this population um some pre-existing before the child was born with autism but also as a result of receiving that diagnosis and working with a child who really has some difficulties. I don’t think we know as much about that that diagnosis of depression in siblings, but I can imagine and I recognize the responsibility and the toll that that can have on the entire family unit, um I think families that are struggling definitely should seek support. There are also support groups for families and for siblings we really encourage family members to take their kids to sibling support groups and real clinical therapy when needed. I think that this monologue really brings to mind that level of responsibility that families may not even recognize that their children are perceiving from a young age but feeling that they need to both protect their sibling who they may see on the school bus being bullied or see them interacting and recognize that they can be a protector for them and then ultimately potentially from a young age recognizing that they’ll go on to have more financial and personal responsibility for them as they age and as they grow up and become adults. And that can be really, really challenging. Um, we do advise families, so much time and effort can be focused on the child with autism because of their needs but I think it’s really important to keep in mind that there’s still a family and that they can take a break from that and try to step away and spend some quality time with other siblings and we really remind families of that from the get go.
MITCHELL: Um, so for people who don’t often get an opportunity to engage with someone with autism, what advice do you have for them?
DR. KATE WALLIS: Remembering that they’re people they have the ability to form relationships sometimes it’s finding one of those particular interests that they have and kind of connecting over that and we can encourage teens and older individuals with autism to connect with people on the basis of those interests, so if you’re really into some sort of game or some sort of sport or team really trying to connect with people who share that passion can be really helpful, but just for people observing and thinking that they may be interacting with someone on the street or in the community who has an autism spectrum disorder just remembering that they’re people. They interact with the world a little bit differently but that doesn’t mean that they’re not interested in other people and that’s really the basis of it. They’re people. They have their own strengths and really playing to those and kind of connect. I don’t know if that answers your question.
YVONNE: I mean in some way she has no idea she has no idea the effect she’s had on her brother and it could be profound.
DR. KATE WALLIS: Absolutely, and it should be celebrated. It’s not always easy to see that and I’m sure there are harder days and less difficult days um but enjoying those moments of connection when they exist and celebrating them is a great thing and this sounds like it was written at a time when she was really introspective and thinking about the burden but I don’t want to put words in her mouth but I’m sure there are days when she can celebrate and enjoy that relationship and what she has been able to learn from caring for another person in that way as well.
YVONNE: And that’s our show.
Thanks to Lisa Gardner for sharing her honest and brave monologue.
And Dr. Kate Wallis for the conversation.
"Autism Speaks" was performed by Dana Kreitz.
So folks! This is the tenth and final episode of our first season! All ten episodes are available online, so if you missed one go back and listen. Our website, www.mouthfulpodcastphilly.com is packed with images, media, and episode extras.
We’ll be back in July for our live show as part of the Philadelphia Podcast Festival. Save the date for July 23rd and visit www.phillypodfest.com for more information about the Festival.