Loving an Asperger's Child

A mother relates the challenges of raising a child with Asperger's.

March 12, 2008— -- Cherie Tiffany felt there was something wrong with her baby soon after he was born. Instead of being comforted by his mother's hugs and kisses, Austin disliked being picked up. He was extraordinarily fussy, screaming and crying for no clear reason. When Tiffany tried to comfort him, he grew more agitated. She soon figured out the best way to deal with his upsets: wrap him up in a cozy blanket, put him in his crib, and let him be.

Tiffany's baby was born with Asperger's Syndrome, which, in lay man's terms, is a mild form of autism. Today many of us know about Asperger's from T.V. -- last year America's Top Model featured a contestant with Asperger's, and Boston Legal features an eccentric and brilliant trial lawyer with Asperger's. But 11 years ago, in De Soto, Iowa, Asperger's was not widely understood.

Today we know that the behaviors Austin exhibited are textbook symptoms of a baby on what doctors call the autism spectrum. Nevertheless, says David Beversdorf, Assistant Professor of Neurology of the University of Missouri, diagnosing a pre-verbal child is very difficult.

Baby Austin was the result of a summer fling, and Tiffany, now 45, felt blessed when he was born. She was a successful insurance sales agent and saving to buy her own home. Yet there was a predictable void. She'd always wanted to be a mother.

But as Austin grew his upsets worsened. He was terrified of the vacuum cleaner. He howled when she used her hair dryer. Any sort of loud noise got under his skin, and she had to wait until he was fast asleep before turning on any household appliance.

In spite of his tantrums, Tiffany knew she had a precocious child on her hands. From pre-K to first grade he showed unusual scholastic aptitude, particularly in math. She says he went through computer learning games at lightening speed. "He ate them up something fierce! In first grade, out of 100 kids, only he and one other child were put into the gifted program. He was doing triple-digit addition."

Still, there were persistent signs that all was not well in Austin's head. For one thing, he chewed up the collars of his shirts. He'd come home from school and the fronts would be soggy with saliva. Sometimes he'd gnaw holes and she had to throw them out.

Then there was the school conference. It was recess, and Tiffany watched as his classmates played. Her child, on the other hand, seemed to be in his own world. Austin was just walking around the playground talking to himself. "He was talking to his hands, he was sort of making puppets with his hands. I thought, that's strange."

At the same time, life grew more difficult at home. Austin feared and loathed spontaneity. If, for example, Tiffany announced an emergency grocery store run, Austin would have what she calls a melt down. She would later discover that her son's despair was born not simply out of a desire to continue playing his video game, but anguish over what he perceived as an abrupt change of the day's plan.

The first half of second grade was the worst. He couldn't tie his own shoes or pull up his own zippers. His friends had zoomed ahead both in motor and social skills. Gym wasn't fun for the child whose (undiagnosed) Asperger's is characterized, in large part, with poor coordination.

Even his schoolwork suffered -- he was no longer the math star. Plus he developed extreme anxiety over tasks involving language arts or penmanship.

It didn't help, says Tiffany, that Austin was placed with an instructor whose teaching style proved a poor fit. She'd clap her hands and shout "go!" as a signal to begin timed math tests. For some kids, the approach made math fun -- like a competitive sprint in P.E. class. But for Austin, the noise and pressure felt like an assault.

Then came the open house. "There was a lot going on, a lot of stimulation. Parents and kids all talking at once. Austin was literally under the desk starting to cry. I was just like, 'Stop it, what are you doing?' I had no clue."

But Tiffany realized her son needed her intervention. She fought to have him moved to a different classroom, where he made some progress. But they still couldn't pinpoint the source of his distress and behavioral quirks. Then the school's social worker did some research and brought up the possibility that Austin suffered from Asperger's. Tiffany went straight to Google.

What she discovered was revelatory, and she haunted the bookstore near her office and read everything she could on Asperger's. Many of the symptoms and traits fit Austin perfectly, but not all. She compares putting together the sometimes conflicting data to piecing together a jigsaw puzzle. When Austin scored high on the Sohn_Grayson -- a diagnostic test created by a child psychologist and a special education teacher to help parents determine if their child might have Asperger's -- for Tiffany the puzzle was complete.

Regrettably, says Tiffany, Austin's psychiatrist had a different opinion.

Tiffany says the doctor determined that Austin suffered from clinical depression, as well as "Pervasive Developmental Disorder Not Otherwise Specified". It was a puzzling diagnosis for the mother. "I just decided that PDD/NOS is just a catch-all. What they call it when they don't know what's wrong,' she says.

Tiffany says she is angry the doctor didn't seem to take her opinion seriously, but that at the time she felt at a loss. "I kept being told that he was the best in Des Moines. And when you're being told that this is the greatest guy since sliced bread, you begin to doubt yourself."

Austin's former doctor did not respond to repeated requests for comment, but Beversdorf is one of several experts (none of whom have ever met Austin) who is of the opinion that it may have been Austin's co-morbidity that caused the confusion. Austin's current medical team has determined that Austin suffers from an unspecified mood disorder in addition to Asperger's. Says Beversdorf: "Sometimes when doctors come to a diagnosis, they think, 'there, it's solved!' and then go to work on alleviating the symptoms."

Whatever the case, the 7-year-old was prescribed one antidepressant after the other, including Paxil and Zoloft. Nothing helped. When the eighth antidepressant proved ineffective, Tiffany decided enough was enough. "It got to the point where I felt honest-to-god, my son is just a lab rat. It was like they had a dart board and were just trying to hit the mark."

Third grade was difficult. He continued to act strangely, and to react to others in unpredictable ways. Linda Berch, his special education teacher, remembers that he once went into what's called the "crisis-cycle" due to the smell of broccoli cooking in the cafeteria.

Austin's classmates, many of whom have been in class with him since kindergarten, learned to move to one side of the room when Austin hit the floor, or, on at least one occasion, to clear out completely.

Happily, Austin has had the loyalty of classmate and fellow math enthusiast Claire Walker since kindergarten. Claire's mother, Jolene, says that teachers have remarked that Claire's ability to joke with Austin and make him giggle when he felt overwhelmed has made a huge difference over the years. Sometimes Claire would just sit with him quietly and talk him off the ledge, so to speak.

Claire, who speaks honestly but guardedly about her eccentric friend, remembers how badly she felt last year when she had to tell Austin he wasn't invited to her 10th birthday party. "It's an all-girl's party," she told him. She and a handful of classmates planned to watch Hannah Montana, talk about boys, and eat cake.

But Tiffany says Austin was inconsolable. She tried to make him understand that sometimes girls just want to be with other girls, but he couldn't make sense of it. There was an additional component.

"I was also afraid they wouldn't be nice to him," Claire admits.

The prepubescent years are tough for those with normal perceptive abilities, says Beversdorf. For children with Asperger's, it can be excruciating. "He's getting to the age where the social rules change. Imagine what it's like if your insight is impaired."

That was the year Austin suffered a prolonged emotional crisis. Tiffany had to help him up the school stairs each day, giving him a pep talk every step. "I told him, 'you can do it. You can do it, Austin.' "

But on the day he said he wanted to die, she checked him into the hospital for a third time. Only this time she chose a different hospital to get a second opinion. It turned out to be the best decision she could have made: in less than 24 hours, Austin was finally diagnosed with Asperger's.

A polite, soft-spoken kid who seems a little bored with predictable questions, Austinis now being treated with memantine -- the generic name for a drug most commonly used for Alzheimer's patients. Small studies have indicated that memantine can be effective in treating Autism as well, and Dr. Beversdorf (Austin's current doctor preferred not to go on the record) says that a large study is currently underway. He is also on aripiprazole, a drug used to treat the symptoms of autism as well as other psychiatric disorders.

Besides medication, Austin has a team of experts working to make sure he succeeds in school. Berch teaches him social and coping skills for 20 minutes a day in special education class.

Social worker Lindsey Moran sees him twice a week, sometimes taking him to museums and libraries after school. Her main goals include helping him to better navigate his world and to clearly communicate his needs to others. To encourage him to initiate conversations, she might, for example, prompt him to ask the librarian to help him locate a specific Pokemon book he loves.

Moran describes Austin as exceptionally bright, which is unremarkable: most people with Asperger's are said to have average to above average IQ's. More notable is what she describes as the "people-pleasing" aspect of his personality -- unusual for those on the autism spectrum.

Austin is able to stay in function in school with the help of what's called an "associate" (paid for by the state of Iowa.) She's sort of a personal assistant who watches for signs that he's feeling over-stimulated. Sometimes she has to intervene when she suspects he headed into crisis mode.

Berch says Austin scrunches up his face, holds his head, or makes tell-tale noises that sound like small gasps for air. That's when the associate asks if he wants to take a few minutes in the "take-a-break" room. More often than not, Austin says he does.

His mom says DeSoto Intermediate School has done an incredible job converting a large janitor's closet into a comfortable escape. It's furnished with a bean-bag chair, a desk, a favorite picture book, soft carpet. It's Austin's safe-haven from overwhelming internal and external stimuli -- noise, frustration, even smells.

DeSoto Intermediate, which has just one other autistic child out of about 300 pupils, has made quite a few adjustments for Austin over the years. In order for him to feel secure, he has to know the day's schedule, and any changes in it, in advance. He gets to school before the other children arrive so he can read the day's plan on the board. That way he's not thrown for a loop if math class has been replaced with an assembly.

Teachers and students have also learned that physical spontaneity -- even a sudden hearty pat on the back -- can be problematic. So they work around it.

Says Berch: "You can't just run up to him, give him a hug and say 'Hey, how're you doing Austin? Glad to see you! You have to ask, can I give you a hug? And then he'll hug you back, but very stiffly. He's been taught that brief hugs are okay, so he will respond."

Not because he necessarily wants (or doesn't want) to be hugged, she adds. Non-verbal communication is a mystery to Austin, and most of what he understands about how people subtly demonstrate pleasure, anger, or discomfort is a reflection of what he's been explicitly taught by educators and his mom.

Berch recalls watching Austin patiently hold the door for an endless stream of boisterous students excited about a snow day. He stood there, martyr-like, as the kids pushed through. Not because he wanted to be the school doorman, but because he's been taught that holding the door is polite. There's something a little worrisome about the image when one imagines how Austin will fare in high school.

And even with his new meds, Austin has bad days. Like many kids he hates doing homework. But the extreme way he expresses it sometimes makes his mother wonder if this is "as good as it gets."

Money is tight, too. Medical co-pays and bad luck have forced her to declare bankruptcy.

Still, Tiffany says she feels "blessed" for the support she's received from her son's school. "For a long time it was me fighting the system," she says. "I had to fight for all this. I had to say hey, there is something going on here and it's not right and then the school came together for him."