After The Diagnosis: How Families Experience Autism sau|||như thế nào||| 诊断后：家庭如何面对自闭症

RACHEL MARTIN, HOST:

This is WEEKEND EDITION from NPR News. I’m Rachel Martin.

(SOUNDBITE OF MUSIC)

MARTIN: And this is For The Record.

Raising kids is rewarding. nuôi dưỡng|||thú vị And raising kids is hard. That work is compounded when you have a child with autism. |||càng trở nên phức tạp||||||| Ese trabajo se agrava cuando se tiene un hijo con autismo. According to the Centers for Disease Control, 1 in 68 children have been identified with ASD, or autism spectrum disorder. |||||||||||được xác định||rối loạn phổ tự kỷ||tự kỷ|spectrum| ASD is five times more common in boys than girls and cuts across all racial, ethnic and socioeconomic groups. ||||thường||||||và|xuất hiện||||dân tộc||kinh tế xã hội| El TEA es cinco veces más frecuente en niños que en niñas y afecta a todos los grupos raciales, étnicos y socioeconómicos.

There’s a lot of controversy about autism, what causes it and whether it can ever be cured, but that’s not what we’re going to talk about today. ||||tranh cãi||||||||||||chữa khỏi|nhưng||||||||| Hay mucha controversia sobre el autismo, sus causas y si alguna vez podrá curarse, pero no es de eso de lo que vamos a hablar hoy. Instead, we’re focusing on how families experience autism. ||||||trải nghiệm| For The Record today, caring for a child with autism. ||Ghi chú||chăm sóc||||| Para The Record de hoy, el cuidado de un niño con autismo.

CHRISTY HAMMETT: Francis is a sweet, loving kid. |HAMMETT|Francis||||| Francis es un chico dulce y cariñoso. He is just awesome. Es simplemente increíble. He is a big boy, and he is quite a lover. |||||và|||||người yêu Es un niño grande y todo un amante.

MARTIN: This is Christy Hammett. She lives in Bowie, Md., with her husband and two other children. Francis is her youngest. He’s almost 13 years old and in the seventh grade. |||||||lớp| He was diagnosed with autism when he was 2. ||chẩn đoán|||||

We’re also going to hear from Ronald Hampton. He also has three children - two adult daughters and his 31-year-old son. ông ấy|||||hai|||||||

RONALD HAMPTON: His name is Ronald Quintin Hampton, and we call him Ron. We called him Quintin. We call him Boo.

(LAUGHTER) (RISAS)

HAMPTON: He has such a personality, so I think that’s why he has these variety of names. HAMPTON: Él tiene tanta personalidad, así que creo que es por eso que tiene esta variedad de nombres.

He loves strings, and so he had a pet string that he would twirl around his fingers and whatnot, and he wanted that string all the time. Le encantan las cuerdas, así que tenía una cuerda de mascota que hacía girar alrededor de sus dedos y todo eso, y quería esa cuerda todo el tiempo. And he didn’t like it if you took it away or if he’d lost it. Y no le gustaba que se lo quitaran o que lo perdiera. He wanted to try to find - but it had to be a special string. It had to be a special texture for him.

MARTIN: Ron remembers back all those years ago when Quintin was just a toddler. |||||||||||||trẻ nhỏ MARTIN: Ron recuerda todos esos años atrás cuando Quintin era sólo un niño pequeño. He had been meeting all these developmental milestones and then he wasn’t anymore. anh ấy||||||phát triển|mốc phát triển||||| Había estado cumpliendo todos estos hitos del desarrollo y luego ya no. After a lot of tests and evaluations, the doctor called Ron and his wife into his office.

HAMPTON: You don’t never forget that day. That’s like the day you get married. That’s like the day, unfortunately sometimes, people pass. That day was a hard day.

MARTIN: Christy also remembers the day she learned her son has autism.

HAMMETT: We were at the neurologist, and I remember leaving there feeling so sad and so lonely and so lost. And I do specifically remember the long ride home. I remember that long road. And I just remember - and I don’t know if that was kind of, like, a subliminal thing for the rest of our lives like this is a long journey, you know? Y yo sólo recuerdo - y no sé si eso era una especie de, como, una cosa subliminal para el resto de nuestras vidas como este es un largo viaje, ¿sabes?

MARTIN: Christy has been on that journey for more than a decade now. Christy ha estado en ese viaje durante más de una década. And she has learned how to navigate the behavioral challenges of autism. Some of them are particularly hard.

HAMMETT: That’s terrible - when they start taking off their clothes. HAMMETT: Eso es terrible - cuando empiezan a quitarse la ropa. Like, in the middle of, like, the store or school or anything. Como, en medio de, como, la tienda o la escuela o cualquier cosa. And Francis’s biggest thing was the shoes. Y lo más importante de Francis eran los zapatos. The shoes would come off, and they’d get thrown across the classroom or thrown across daycare. Se quitaban los zapatos y los tiraban por la clase o por la guardería.

MARTIN: Ron’s son is 31 years old now, and things like this still happen, even just the other day. MARTIN: El hijo de Ron tiene ahora 31 años, y cosas así siguen ocurriendo, incluso el otro día.

HAMPTON: We took him up to the ENT clinic. Lo llevamos a la clínica de otorrinolaringología.

MARTIN: Ear, nose, throat clinic, yeah.

HAMPTON: So standing there, he had to go, and he did. HAMPTON: Así que de pie allí, tenía que ir, y lo hizo. It just so happened that the Depends caught most of it, but some of it came out, ran over. Dio la casualidad de que los Depends atraparon la mayor parte, pero parte se salió, se atropelló. And so he was standing there. Y entonces él estaba allí de pie. Once he realized and felt the wetness on his leg, he took his stuff off. Una vez que se dio cuenta y sintió la humedad en su pierna, se quitó sus cosas. He took his pants and Depends off. Se quitó los pantalones y los Depends. And so just fortunate, for me, there was a bathroom nearby so I rushed him into the bathroom, wiped him up a little bit and I put the fresh stuff on him and then we went to our appointment. Así que, por suerte para mí, había un baño cerca, así que me apresuré a llevarlo al baño, lo limpié un poco y le puse las cosas frescas y luego fuimos a nuestra cita.

MARTIN: Ron says he doesn’t get frustrated or embarrassed by his son’s behavior. It doesn’t help. It doesn’t change anything.

Those are some of the emotional pressures. The financial pressures of autism are also very real. Christy had to leave her job for a while to cut costs. Christy tuvo que dejar su trabajo durante un tiempo para recortar gastos. She carries a flip phone, and for a while, her family didn’t have Internet at their house. Ron and his wife both worked full-time when Quintin was growing up. Both the Hamptons and the Hammetts had to get outside help to deal with the pressure of the daily routine. It goes something like this.

HAMMETT: Fran gets up. Usually, he gets up between 6 and 7, and...

HAMPTON: He can pick his clothes because he likes certain things. Certain things he don’t want to wear, some things he do, so he’s...

HAMMETT: Then I make him a waffle. HAMMETT: Entonces le hago un gofre.

HAMPTON: Maybe sausage, bacon, salmon cakes. He likes to put it in his oatmeal sometimes (laughter)...

HAMMETT: And usually the bus comes, you know, probably around 7:30-ish.

HAMPTON: So he goes to a service center, so he’s not sitting in the house all day doing nothing... HAMPTON: Así que va a un centro de servicio, por lo que no está sentado en la casa todo el día sin hacer nada ...

HAMMETT: And then he’s usually home between 4 and 4:30.

HAMPTON: And then he’s ready for bed. So then we start all over again the next day.

HAMMETT: My husband and I are under the understanding that Francis will be with us, you know, for the rest of our live, you know, which is a hard thing to swallow. I just - I don’t know what else, you know, we’ll do. I would hope that he could make it into a group home eventually and that he could be able to get a job, you know, something that he would enjoy, maybe working at a pool because he likes water, or - I don’t know what else, you know, he could do.

HAMMETT: You know, it would be great if he had friends, but that’s really - that’s really, I think that’s one of the hardest things is that when these kids - you know, because they have limited language, that limits their availability to be social.

So it’s not like Fran has, you know, a group of kids or guys down the street who are saying hey, come play basketball with us. That doesn’t, you know, happen. We don’t have that for Fran, so we are his friends. We are his squad. We are his buddies, so somebody’s with him all the time, you know.

MARTIN: That’s a lot of pressure on you.

HAMMETT: It’s a lot of pressure. It’s a lot of pressure.

What are you doing? Don’t pour the water in the sink, honey. No viertas el agua en el fregadero, cariño. Do you want more water to drink? Here, give me that bottle.

FRANCIS HAMMETT: Give, give.

HAMMETT: Let me have that. You have this. Are you thirsty?

FRANCIS: Thirsty.

HAMMETT: Yeah.

FRANCIS: (Unintelligible).

MARTIN: I want to be able to let you go because he’s home, but I do have to stick one more personal question - they’re all personal questions. But if you don’t mind me asking, what has the effect of Francis’s diagnosis been on your marriage? Pero si no le importa que le pregunte, ¿cuál ha sido el efecto del diagnóstico de Francis en su matrimonio?

HAMMETT: (Laughter). It’s very hard. It’s very hard. It’s not only hard on our marriage. It’s hard on our family. It’s very taxing mentally and emotionally. It’s very, very hard.

Don’t pour the water out, sweetheart. No viertas el agua, cariño. This is your water. Here. Fran, no, no, no. Sit down. Can you go get a tissue? ¿Puedes ir a buscar un pañuelo? Go get a tissue for your nose. Get a tissue. Go get...

FRANCIS: Go get tissue.

HAMMETT: Yeah, you get it.

FRANCIS: Go get it. Ve a buscarlo.

HAMMETT: It’s in the bathroom. Go in the bathroom and get it.

It’s very hard, and there are moments where it’s much more difficult than others, I will tell you. But my husband and I have been together over 20 years.

FRANCIS: (Vocalizing).

HAMMETT: It’ll be 22 years this spring. HAMMETT: Será 22 años esta primavera. I do need my husband to do what we do here. We need each other, and we depend on each other far more than I think we even realize. But - but we’re going to do this, and we’re getting through this because this is what God has given us, and we were designed to be Francis’s parents.

MARTIN: That was Christy Hammett talking about her son Francis. We also heard from Ronald Hampton talking about his son Quintin.

That’s the story of two parents caring for children with autism. Now, another perspective.

SAVANNAH LOGSDON-BREAKSTONE: I’m Savannah Logsdon-Breakstone. I am 28. I live in Venango County, Pa., and I am a social media contractor.

MARTIN: Savannah struggled a lot as a child.

LOGSDON-BREAKSTONE: I would do things like charge at people, not intending to hurt them but because I wanted to get past them. I would tap my head on walls. Me golpeaba la cabeza contra las paredes. I would hide under things. I was what some parents describe as scary kids.

MARTIN: It took a while to figure out what was going on.

LOGSDON-BREAKSTONE: They were changing mental health diagnoses about every six months. And it’s got to the point where I did not really feel attached to any specific diagnosis because I knew it would change.

MARTIN: With a lot of help, Savannah graduated from high school. She was eventually diagnosed with autism. She tried college, but it was too hard to be on her own. Intentó ir a la universidad, pero era demasiado duro estar sola. After a few years back at home, she got a job and was able to move into her own place. Her family is nearby, and they visit often, which is important.

LOGSDON-BREAKSTONE: When I am not getting help, my kitchen becomes dangerous. LOGSDON-BREAKSTONE: Cuando no recibo ayuda, mi cocina se vuelve peligrosa. There ends up being garbage everywhere, and dishes don’t get done. Acaba habiendo basura por todas partes y los platos no se friegan. And so my family will come in and help clean. They’ll help organize things. They’ll make sure that the garbage goes out, that sort of thing. My mom’s current husband actually manages my finances because it’s not something I’m able to do.

MARTIN: Savannah’s doing pretty well now. She loves her job working as an advocate for people with autism. She’s got a dog named Molly, and she’s got good friends in her life. I asked her what she wants for her future.

LOGSDON-BREAKSTONE: I know I want a big enough yard so that I can have chickens. LOGSDON-BREAKSTONE: Sé que quiero un patio lo bastante grande para poder tener gallinas. And I hope that I can have a significant other who complements me in ways so that I’d be able to have children someday. So I mean, those are pretty vague goals for the most part, but you know, that’s what I want my future to be.

MARTIN: For The Record this Sunday morning, we heard from Savannah Logsdon-Breakstone, Christy Hammett and Ronald Hampton. We’d like you to share your experience with autism. You can do that on WEEKEND EDITION’s Facebook page and at npr.org.

And stay with us. We’re covering all the news about the U.S. prisoner exchange with Iran and the decision to lift economic sanctions on that country. We’ll have more of that unfolding story coming up.