Parents of the Autistic Weigh Lifelong Care Options At 19, Joey Mazzafro is no longer a child. But his severe autism means he will never be able to live independently. So his parents are trying to construct a support system for their son that will last after they are gone.
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Parents of the Autistic Weigh Lifelong Care Options

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Parents of the Autistic Weigh Lifelong Care Options

Parents of the Autistic Weigh Lifelong Care Options

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Autism begins in childhood, and it doesn't go away, generally.

Children with autism become adults with autism, and many will never live on their own. For their parents, that can mean responsibilities that last a lifetime and beyond.

NPR's Jon Hamilton met one family struggling to create a future for a boy named Joey.

JON HAMILTON: The scene could be straight out of an old TV show, say, "Leave it to Beaver." A doting mom named Maryjean Mazzafro is making an after-school snack for her son, Joey. Today, it's pepperoni pizza.

Ms. MARYJEAN MAZZAFRO (Mother of Joey Mazzafro): So he's going to have this and he's going to have an orange. Now, he doesn't really like that but he does it because he doesn't eat vegetables. Ketchup is the only vegetable he eats.

HAMILTON: Joey's school bus pulls up at the curb.

(Soundbite of bus passing)

Ms. M. MAZZAFRO: How was your day?

Mr. JOEY MAZZAFRO: Oh, yeah, fine.

HAMILTON: Joey heads for the kitchen. He gulps down the orange, then it's on to the main course.

Ms. M. MAZZAFRO: Okay, Joey. This is going to be real hot so I don't want you to burn yourself.

Mr. J. MAZZAFRO: Okay.

Ms. M. MAZZAFRO: Okay.

HAMILTON: Here's the part that's not made for TV: Joey is 19. He is 5'10" and weighs about 200 pounds. He doesn't make eye contact much. He didn't start using a toilet regularly until he was 8. Pretty soon, the pizza is gone and so is Joey. He's down in the basement, relaxing.

Mr. J. MAZZAFRO: (Unintelligible)

HAMILTON: For Joey, that means singing along with the same five seconds of a favorite video over and over and over.

Mr. J. MAZZAFRO: (Unintelligible)

Ms. M. MAZZAFRO: What chant is that?

Mr. J. MAZZAFRO: Peter Pan.

HAMILTON: It's an odd life. But Maryjean says it's a good one for her son: He's safe, he's loved. Her great fear is that it won't last. In a couple of years, Joey will be too old to attend public school anymore. Then it will be up to his parents to arrange just about everything in his life, and Maryjean says they're worried about how long they can do that.

Ms. M. MAZZAFRO: He's getting bigger and stronger. We're getting older, weaker - things are going south rapidly. And I think my husband thinks, oh my God, you know, my mother died of a heart attack at 57, and I'm 52.

HAMILTON: There are institutions, of course. Some of the private ones can be quite fancy, but they are not like home. And there are relatives. Joey has a sister named Bobbie.

Ms. BOBBIE MAZZAFRO (Sister of Joey Mazzafro): I certainly want him to be close to me.

HAMILTON: But Bobbie is 21. She's still in college, and she's thinking about getting married someday and having kids.

Ms. B. MAZZAFRO: One issue is that he's not a fan of babies, so it would be very, very difficult for him to be in a house with me if I, say, have kids.

HAMILTON: Maryjean agrees with her daughter.

Ms. M. MAZZAFRO: Autistic children move what doesn't belong there, so if it happens to be a baby, you know…

HAMILTON: The challenges are daunting, but there are some people trained to help. The Mazzafros have been working with an estate planner named James Allotey. He's with Metlife and specializes in helping families with children like Joey.

The Mazzafros met Allotey through some workshops he gave near their home outside Baltimore. He says that for many parents, these talks offer the first glimpse of a way to take control of their child's future.

Mr. JAMES ALLOTEY (Estate Planner, Metlife): The typical response when people attend our workshop is, where have you been all my life?

HAMILTON: They often find their way to Allotey when their child is 17 or 18.

Mr. ALLOTEY: It becomes imperative that the parents do more for their adult children, because the government will be doing less once they're out of high school.

Mr. J. MAZZAFRO: (Unintelligible)

HAMILTON: After an hour of his Peter Pan video, Maryjean Mazzafro takes Joey on a walk around their neighborhood. She knows that Joey will always need supervision, but she is trying to make sure he also has some basic survival skills.

Ms. M. MAZZAFRO: Joe, wait at the corner. Good boy.

HAMILTON: It's a slow process.

Ms. M. MAZZAFRO: Can we cross?

Mr. J. MAZZAFRO: We can cross.

Ms. M. MAZZAFRO: No, we can't. Look at that big car. You have to look.

Mr. J. MAZZAFRO: What's wrong?

Ms. MAZZAFRO: Anybody coming?

Mr. J. MAZZAFRO: We can cross.

Mr. JOE MAZZAFRO SR. (Father of Joey Mazzafro): Can I have a (unintelligible) because I look really good.

HAMILTON: Around 6:00, Joey's father gets home.

Mr. J. MAZZAFRO SR.: Can daddy get a huggy bug?

Ms. M. MAZZAFRO: (Unintelligible).

Mr. J. MAZZAFRO SR.: Okay. How are you?

Mr. J. MAZZAFRO: (Unintelligible).

Mr. J. MAZZAFRO SR.: All right. No huggy bug. How are you buddy?

HAMILTON: Joe Mazzafro used to be a captain in the Navy. He retired to the private sector so he'd be able to do more for his son.

Mr. J. MAZZAFRO SR.: Joey, how are you?

Mr. J. MAZZAFRO: I'm fine. There's snow.

Mr. J. MAZZAFRO SR.: It's not snowing. How was your day, Joe?

HAMILTON: Joe, Sr., says one of his fears is that his son's odd behavior will get him in trouble someday when his parents are no longer around to help. What if Joey were on his own and had a run-in with a police officer?

Mr. J. MAZZAFRO SR.: Hey, come here kid, you know, just looks blindly, walks away. Hey, I'm talking to you.

Mr. J. MAZZAFRO: (Unintelligible).

Mr. J. MAZZAFRO SR.: Keeps on going. Next thing, you know, having been a police officer, this turns the police officer violent. He will now go after that person and physically, you know, wrap him up. And that's what cops do, and rightly so because usually these are bad people. Joey is just going to look like, to him, a surly teenager.

HAMILTON: Even though in many ways Joey is still a child and always will be.

Mr. J. MAZZAFRO SR.: When do I stop child-raising? When do I stop doing that? When do I stop being responsible for this? Well, the answer is, clearly, never.

HAMILTON: Not even after he and Joey's mom have died. The Mazzafros have been planning for that day. A few years ago, they bought the house they're living in now. Maryjean liked it because she thought Joey would enjoy the pool in the backyard.

Mr. J. MAZZAFRO SR.: When I looked at this house, immediately saw the basement and said, aha, a place for him to live.

HAMILTON: Perhaps for the rest of Joey's life.

Mr. J. MAZZAFRO SR.: I'd like to think that I'll accrue enough money somehow or another that maybe we can fund this house with another kid or two, you know, where you have several families contributing. Because the hard part is not the house. I got that. It's the care. It's the persons. It's the people. And I got a guy, I got somebody in mind, I know who I want. I don't know if I'll get him. Have him, you know, you live here. We'll give you the house. The quid pro quo is take care of Joe.

HAMILTON: The Mazzafros are not typical. James Allotey says they are better off than most families and better prepared.

Mr. ALLOTEY: Sometimes families don't even have a guardian picked out for their children. Then they have to worry about the physical environment itself. Then they need to worry about, well, who's going to take care of the money? But maybe the most important thing is: Who is going to love him like they did?

HAMILTON: The Mazzafros know that money and paid supervision are only part of the answer. Joe says that without a person who cares deeply for them, adults with autism can end up isolated in an institution, or even living on the street.

Mr. J. MAZZAFRO SR.: I used to be one of these guys, panhandlers, homeless people, you know, come on. Give me a break. Get yourself together and figure this out. I don't think that way anymore because I think a lot of those people are people like Joey who have not found or could not live in these institutional settings.

HAMILTON: The Mazzafros want to make sure their son has other options.

John Hamilton, NPR News.

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