Mysteries of the Mind: Dealing with the different worlds of autism

The first of four parts: Accomplished autistic people like Temple Grandin get lots of publicity, but many families shoulder the burden of caring for children with severe symptoms



Jeffrey is crying.

Standing at the Pittsburgh Zoo and PPG Aquarium one day in May, the stocky, broad-faced 19-year-old is bawling like a toddler, which in some ways he still is.

Jeffrey Maloney has severe autism. He does not speak, except for some short phrases. He is not toilet-trained. He cannot read or write. He suffers from seizures. And he is obsessed with certain objects and activities: animated Disney movies; GeoMagnets; and quarters, which he touches and stacks and lines up in precise, repetitive ways.

Growing up with autism: The Maloney Family

Lisa and Don Maloney have four children, two are young men entering adulthood with autism diagnoses. (Video by Julia Rendleman; 10/6/2013)

His routines govern his life, and when they are disrupted -- or he thinks they have been -- he melts down, as he is doing on this warm spring day. For some reason, says his mom, Lisa, Jeffrey didn't think this was the right day for the family to be at the zoo, which is one of their regular outings, and so he was distraught.

For people with autism, even those who can speak and score high on intelligence tests, changes in their environment can completely undo them. For Jeffrey, his mom says, it can be "as simple as someone taking his glasses off in a restaurant, because if you looked a certain way when he walked in and then you changed, he does not like people to change."

Two of the four Maloney children have autism. Jeffrey's older brother, Patrick, 20, has Down syndrome and a form of autism known as "pervasive developmental disorder not otherwise specified." Like Jeffrey, Patrick does not speak and is not toilet-trained.

Lisa and Don Maloney, who live in McCandless, also have a 25-year-old daughter, Stephanie, who works for the University of Pittsburgh after having finished a Peace Corps assignment in Jordan, and a 16-year-old son, Adam, who is in the 11th grade at North Allegheny High School and would one day like to become a forest ranger.

Jeffrey and Patrick are two of more than 1 million people in the United States who have been diagnosed with some form of this mysterious brain disorder, which is characterized by social difficulties, communication problems and repetitive behaviors and fixed interests. And they are also in a growing set of families with two or more children with autism -- one recent study suggested that 11 percent of affected families have more than one child with the condition.

Lisa, a fundraiser for the advocacy group Autism Speaks, and Don, a truck driver for UPS, say they are not aware of a family history of autism, and don't know how two of their four children ended up with it.

They also don't spend a lot of time worrying about that issue.

"I can't say I ever thought, 'Oh no, we're not going to live the dream life we would've had,' " Don said. "I think I've always been of the opinion you play the hand you're dealt and you make the best of it."

"Our life is severely impacted by autism," Lisa added. "Every part of our life -- mine, my husband's and our typical kids' -- is geared to run around what the boys need."

She said it was "a little nerve-wracking" to allow the Post-Gazette to follow her family, because "you don't know how it's going to come out in the story -- because I don't want people to think we're saying 'Woe is me,' because that's not it. You just go about your daily life and you trudge through."

How it began

Don and Lisa met at Lawrenceville Catholic High School and got married after he had gone to Marietta College and she had gone to Pitt.

Stephanie was born in 1987, and from the start, she was a precocious child. Patrick followed in 1993, and even though he had Down syndrome and then got an autism diagnosis, the Maloneys planned on having more children.

Then came Jeffrey, in 1994, and by the time he was diagnosed at the age of 2, she already was pregnant with Adam.

Looking back on it, Lisa said, she should have noticed the signs in Jeffrey. "He would crawl on his fists, and we thought it was the cutest thing. He looked like a little badger." But now she thinks it was an early sign of his extreme sensitivity to touch. "And so now I think, why didn't we think it was odd?"

He also didn't show the same curiosity about people around him as Stephanie had. "I feel like we were constantly asking Jeffrey did he want a drink or want something else." Looking back on his first birthday party, she remembers that "he did not want to rip open packages or want to see what was in them, but we thought he was just apprehensive or something."

Once she knew that Jeffrey was autistic, she prayed that her fourth child would be a girl, and when Adam was born instead, "I was overwhelmed, because I thought we would have had much better odds [of avoiding autism] if he had been a girl." As it turned out, Adam developed typically, except for speaking a bit later than normal.

Don said their decisions about having more children might have been different if Patrick and Jeffrey had been their first two. "If we had had two children with handicaps in a row, I think we would have asked, 'Should we do this again?' "

Two worlds of autism

To spend time with the Maloneys is to realize that there are two different worlds in autism.

Of course, many researchers in the field now say that the symptoms and abilities of autistic children vary so widely that we ought to be talking about several different "autisms."

On a practical level, though, the picture the Maloneys paint is much different than the image people get when they see highly talented autistic people like Temple Grandin or John Elder Robison.

Among many who occupy the higher-functioning realms of autism, including those with Asperger's syndrome, there is resentment toward any talk of "curing" autism. They want the condition to be recognized as a special set of differences and gifts.

As a fundraiser for Autism Speaks, whose mission statement says it is "dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism," Lisa constantly hears from people who hate the term "cure."

"In families with autism whose kids do really well, they get almost angry at people who say we want a cure or want a change. I say to this one young man who always brings it up to me, 'Look: if my son could be you, that would be a cure.' "

"As a parent who has a child on the more severe end of the spectrum, I think that's a very different thing than someone with high-functioning Asperger's.

"I want that for my own child, to tell you the truth. I would think I had gone to heaven if my child could be an Asperger's child. But even for the Asperger's children, it's not normal. You can ask everyone to accept you for who you are, but you are not in that straight and normal part of the world."

Still, where people with Asperger's are apt to be viewed as awkward or geeky, autistic children like Jeffrey and Patrick are the object of often pitying stares.

Jeffrey "will hit his head with his hands, or bang his head against the wall or table, or pinch himself," Lisa said. "And people will stare, and they should stare, because he's a big kid. That I can be OK with. But it's the people who stand there a long time staring that get to me."

One time on a shopping trip, Jeffrey lay down in the middle of a mall, "and there was a woman who just stood there and stared at us like we were the circus. Yes, look; yes, be sympathetic; but then, move on, or offer to help."

While the negative encounters stand out, the Maloneys also appreciate the people who have been extraordinarily kind and patient with their sons, whether it is the Giant Eagle employees who allow Patrick to order food from pictographs on his computer tablet, or the women who cut the boys' hair at a Great Clips near their home.

The impact on siblings

When a family has a child with special needs, let alone two, it can radically change the landscape for the remaining siblings.

For Adam Maloney, it made him grow up faster and quickly take on the role of helper to his older brothers.

"He's a remarkable child," his mother said. "Very level-headed, very responsible. Sometimes I would try to tell him, you know, things won't fall apart if you just be a young child sometime. Three or four times teachers in elementary school called me in to say, 'He's too serious,' but I would say, 'Well, he has a very serious life.' "

His father said Adam "realized from a young age that he's got to sacrifice, and pitch in a little more, but in the long run, it's going to be beneficial because he knows it's hard for any family to function well, and he's got a basis of knowing what it takes to keep a family going."

Adam helped with Jeffrey's intensive therapy when Jeffrey was young, and now, he will even do his homework in the bathroom so he can watch while Jeffrey takes a bath to make sure he doesn't have any seizures.

How does he feel about all this?

"The No. 1 lesson I've learned is: Always be on your toes. That's pretty much the basis of everything. Everything revolves around Jeffrey, and paying attention to him at all times."

And while that may seem to ask for a lot of self-sacrifice, Adam said that as a result, "I think I'm a lot nicer to people and I'm more understanding. I'm also a lot more aware of other people than some are. Even with my sister, she won't have to say anything and I'll understand how she is feeling based on her body language."

He also has created his own space by joining track and soccer teams in school, which allows him to decompress from pressures at home.

"My friends will say they've had a really bad day, and I'll ask why, and they will say something like, 'Oh, my TV was broken and I couldn't watch my TV shows' and in the back of my mind I'm thinking, 'Well my brother screamed for eight hours today and I was trying to sit in my room and have peace and quiet and I couldn't do it.' Other people's problems aren't really problems in my world anymore."

Lisa Maloney said her family life has changed how she views other problems, too.

"I don't feel like I get as crazy angry with people, because you don't know what they're going through. If someone cuts me off in traffic, that's OK, because maybe that person has to get home because their son is having a seizure -- you don't know."

Facing the future

One reason the Maloneys agreed to talk about their lives is that they realize they are in the first big wave of parents whose autistic children are entering an uncertain adulthood.

Under special education laws, children with disabilities can remain in school until they are 21, but after that, the structure and interactions that school provides will go away, and the Maloneys worry about what will replace that.

She is ambivalent about group living, not only because of concerns about the quality of programs that are available, but also because of her desire to keep Jeffrey and Patrick safe and happy.

"One day I'm thinking I'll never put them anywhere, they're going to be with me until the day I die, and then another day, I'll think 'Oh, this is not fair to them or me or anyone, and we're going to start making a plan about where to put them.' "

Right now, her dilemma is moot, though, because Patrick and Jeffrey are still on the waiting list for a "consolidated waiver" from the state of Pennsylvania, which provides funding for day programs, group living and other extensive services.

Even when families get those waivers, there often are not slots available in group homes for the number of people applying.

"I know they need to be able to transition to some kind of adult life without me, but it's scary," Lisa said.

Don said that his dream would be to buy the house next door in their leafy neighborhood and move Jeffrey, Patrick and one other special needs adult in with them, with a trained staff. But right now, the money for that is simply not there.

"One of our big fears." he added, "is that Adam and Stephanie, if something were to happen to us, that they would have to take care of their brothers. Lisa and I have said that we wished we had someone else in the family that we knew, if tomorrow we were both in a car accident and died, that this person would take care of Jeffrey and Patrick, and we don't have such a person."

Adam admits that he has mixed feelings -- he wants his brothers to be taken care of, but he is not sure about shouldering that burden himself. When his mother voices concerns once again about the quality of group homes, he adds: "Well, I think we just have to accept the fact that no group home in the whole nation is ever going to be perfect."

As they try to see the way into their future, the Maloneys also try not to burden others with their present.

"People in my family comment all the time, 'Oh, you just handle it all so well,' " Lisa said, "and we do trudge through it, but I don't go into my office and say I've been scrubbing poop for four hours, or if I get into my office and my boss says I thought you were going to be here at 8:30 and it's 10 to 9 and we have to go to a meeting, I don't say 'Well, I had to get the last load of laundry in or we wouldn't have had clean sheets tonight.' "

Their work lives revolve around their sons' needs in other ways, too. Don has worked for UPS for 25 years, but he switched to a nighttime truck delivery job several years ago to help care for the family. Each evening, he drives two trailers to Columbus, Ohio, and then returns a trailer to New Stanton before coming back home in the morning.

He sleeps intermittently during the day so he can help with supper and chores before heading off to work again.

"I couldn't have done all this without him," Lisa said.

And even though she knows what a burden she and her husband face each day, Lisa believes that in the end, the task of caring for Jeffrey and Patrick has made her family better and the other children more compassionate.

"No one would ever say to me, 'I wish I could wake up in your life,' " Lisa said. "But I think a lot of people would like the relationships we have in our family unit -- and it is because of the boys."

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Mark Roth: mroth@post-gazette.com, 412-263-1130 and on Twitter @markomar; Julia Rendleman: jrendleman@post-gazette.com. First Published October 6, 2013 4:00 AM


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