After The Diagnosis: How Families Experience Autism

Jan 17, 2016
Originally published on January 19, 2016 7:16 pm

Raising kids is rewarding and raising kids is hard. That work is compounded when you have a child with autism. And each of these families experiences the disorder differently.

On Saturday, we heard four parents share the moment they learned their children had autism, and the signs that led them to seek a doctor's opinion. Now, we learn their experience following the diagnoses, the resources they found and help they still need.

Hear more from two of these parents about the trying journey that follows the diagnosis.

This week on For the Record: caring for a child with autism.

Ronald Hampton (Washington, D.C.) on son Quintin, 31

Quintin was diagnosed with autism when he was 2 years old.

"His name is Ronald Quintin Hampton," Ron Hampton says. "We call him Ron, we call him Quintin, we call him Boo. He has such a personality so, I think that's why he has, these variety of names."

Christy Hammett (Bowie, Md.) on son Francis, 12

"Francis is a sweet, loving kid," says Christy Hammett. "He is just awesome. He is a big boy and he is quite a lover."

She's been learning how to navigate the behavioral challenges of autism for more than a decade now.

Everyday Challenges

"That's terrible when they start taking off their clothes like in the middle of like the store or school or anything," says Hammett. "Francis's biggest thing was the shoes. The shoes would come off and they'd get thrown across the classroom or thrown across daycare."

Ron Hampton's son is 31 years old and things like this still happen.

When Ron took Quintin to the ENT clinic recently, he needed to go to the bathroom, so he went in his diaper.

"The Depends caught most of it, but some of it came out, you know ran over, and so he was standing there once he realized and felt the wetness on his leg he took his stuff off," he says. "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."

Ron says he doesn't get frustrated or embarrassed by his son's behavior. It doesn't help because it doesn't change anything.

Beyond emotional pressures, the financial pressures are also very real. Christy had to leave her job for a while to cut costs. She carries a flip phone and for a while her family didn't have Internet at home. Ron and his wife worked full-time while caring for Quintin.

Finding A Routine

But both the Hampton and the Hammett families had to get outside help to deal with the pressure of the daily routine. It goes something like this.

After Francis picks out his own clothes, Christy makes him breakfast.

"I make him a waffle, maybe sausage bacon salmon cakes, he likes to put it in his oatmeal sometimes," she says. "Usually the bus comes around 7:30-ish. So he goes to a service center so he's not sitting in the house all day doing nothing. And then he's usually home between 4 and 4:30. And then he's ready for bed. So then we start all over again the next day."

Christy says it's not easy for her and her husband to accept that her son may need this kind of supervised routine forever.

"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," she says. "I don't know what else you know he could do."

These pressures have weighed on the Hammetts' almost 22-year marriage.

"[My husband and I] need each other and we depend on each other far more than I think we even realize," Christy says. "We're getting through this, because this is what God has given us and we were designed to be Francis's parents."

Savannah Logsdon-Breakstone (Venango Co., Penn.), 28

Another Perspective

Like Quintin and Francis, Savannah Logsdon-Breakstone, now a social media contractor, struggled a lot as a child. But she didn't get her diagnosis as quickly as they did.

"I would do things like charge at people, not intending to hurt them, but because I wanted to get past them," she says. "I would tap my head on walls, I would hide under things ... I was what some parents describe as 'scary kids.' "

While the signs were there, it took a while to figure out what was going on.

"They were changing mental health diagnoses about every six months," she says. "And it got to the point where I did not really feel attached to any specific diagnosis because I knew it would change. I was put on a lot of different psychotropic medications and that would change every three months."

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 and moved back home into her own place. Still, having her parents nearby is a big help.

"When I am not getting help, my kitchen becomes dangerous. There ends up being garbage everywhere, and dishes don't get done," she says. "My family will come in and help clean and help organize things, they'll make sure the garbage goes out, that sort of thing. My mom's current husband actually manages my finances because it is not something that I am able to do."

She has some ideas in mind for her future, too.

"I know I want a big enough yard so I can have chickens," she says. "I hope that I can have a significant other who compliments 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."

We'd like to hear about your experience with autism. If you're willing to share, you can add it here.

Copyright 2016 NPR. To see more, visit http://www.npr.org/.

Transcript

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. And raising kids is hard. That work is compounded when you have a child with autism. According to the Centers for Disease Control, 1 in 68 children have been identified with ASD, or autism spectrum disorder. ASD is five times more common in boys than girls and cuts across all racial, ethnic and socioeconomic groups.

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. Instead, we're focusing on how families experience autism. For The Record today, caring for a child with autism.

CHRISTY HAMMETT: Francis is a sweet, loving kid. He is just awesome. He is a big boy, and he is quite a lover.

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. He was diagnosed with autism when he was 2.

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

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

(LAUGHTER)

HAMPTON: He has such a personality, so I think that's why he has these variety of names.

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. And he didn't like it if you took it away or if he'd lost it. 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. He had been meeting all these developmental milestones and then he wasn't anymore. 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?

MARTIN: Christy has been on that journey for more than a decade now. 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. Like, in the middle of, like, the store or school or anything. And Francis's biggest thing was the shoes. The shoes would come off, and they'd get thrown across the classroom or thrown across daycare.

MARTIN: Ron's son is 31 years old now, and things like this still happen, even just the other day.

HAMPTON: We took him up to the ENT clinic.

MARTIN: Ear, nose, throat clinic, yeah.

HAMPTON: So standing there, he had to go, and he did. It just so happened that the Depends caught most of it, but some of it came out, ran over. And so he was standing there. Once he realized and felt the wetness on his leg, he took his stuff off. He took his pants and Depends off. 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.

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. 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.

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...

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. 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?

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. This is your water. Here. Fran, no, no, no. Sit down. Can you go get a tissue? 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.

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. 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. 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. 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. There ends up being garbage everywhere, and dishes don't get done. 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. 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. Transcript provided by NPR, Copyright NPR.