Autism: Finding hope

by ANGELA POMPONIO for Body & Mind - Tuesday February 24, 2009

Kyle Weiss had the signs by age 2: He dumped toys over his head instead of playing with them. He couldn't sit still and wasn't beginning to talk like other toddlers. "There were no words like 'Mommy, Daddy or I love you,'" Kyle's mother, Patricia, said.

So when Patricia Weiss and her husband, Jeff, of Carlisle, went on a family vacation that year, relatives hinted that he should be seen by a pediatrician.

The couple did, and they returned with the diagnosis that they had prepared themselves for: Kyle had autism, a complex neurological disorder, one that affects a person's brain function in varying degrees. Generally making an appearance in children by their 3rd birthday, the disability often impairs development of social skills, language and behavior.

Jeff Weiss took the news hard. "I didn't think about it for a while. The admission that there is something wrong with your child is hard," he said.

It was a similar scenario for Suzy Brenner of Mechanicsburg, who, as many mothers do, remembers her son Alex's first words: Baby, Dad, kitty and ball. In a matter of months, however, Alex, then nearly 3 years old, stopped using his words. Instead, he started whining, banging his head on furniture and staring sideways at the television.


Suzy Brenner, a Mechanicsburg hair stylist, delicately trims her son's hair in her beauty parlor. Years ago, Alex, who is autistic, wouldn't let her touch his hair without several other people helping. Today, numerous parents go to Suzy Brenner when their autistic and mentally handicapped children need haircuts.

Brenner, whose other son was 7 at the time, knew deep down that something was wrong with her younger boy. "All of a sudden, Alex wouldn't respond to his name, and all the language he had learned went out the window," Brenner said. "He never pointed to get something so I could never figure out what he wanted."

Brenner's intuition and suggestions from friends led her to an appointment at the Penn State Milton S. Hershey Medical Center. While there, she left the doctor's office for a few minutes to calm Alex, who had become increasingly agitated. When she returned, the doctor filled her in.

The doctor said, "'I just told your husband. Alex has autism,'" Brenner said, recalling that day nearly 17 years ago and the long, quiet ride home with her husband, Rick.

Autism? Just what was it? Why her son? What did it mean for his future? Looking for answers, Brenner walked to the library and pulled out an encyclopedia. Within its pages, she found one line that stood out: There was no cure. "That was scary," Brenner said.

With a few books on possible treatments and therapies for autism, Brenner returned home, determined to fight for Alex. She wanted him to one day say "Mom," read storybooks and attend school with other children. She couldn't imagine Alex spending the rest of his life banging his head repeatedly. That's when she prayed: "Lord, just give me the strength here."

Diagnoses on the rise

Since the early 1990s when Alex Brenner was diagnosed with autism, not much has changed about the disorder. Researchers still haven't discovered a definitive cause, although genetics, vitamin levels, environmental factors and vaccinations have been targeted. There is still no cure.

What they do know, however, is that diagnoses are on the rise, and at an alarming rate.

In April 2007 -- a month now dedicated nationwide as Autism Awareness Month -- the Centers for Disease Control and Prevention announced that one in 150 children is being diagnosed with autism spectrum disorders (ASDs), possibly more. The data was collected for two years among 8-year-old children in 20 states, making it the largest study so far into childhood autism.

Among other CDC findings about autism:

• It is three to four times more prevalent in boys than in girls.

• There appears to be no statistical difference among children of different races.

• Children are being diagnosed at 4 to 5 years old, long after the signs of autism begin, usually at 24 months.

At the Penn State Milton S. Hershey Medical Center, Jeannette C. Ramer, a pediatrician who specializes in autism and other developmental disorders, wasn't surprised by the CDC's study.

"I believe firmly that we're seeing more children with ASDs," she said, noting that her office is "overwhelmed and overloaded" with appointments from parents who have autistic children or who are seeking a diagnosis.

Most of the families have been referred there from county early-intervention programs that screen children for developmental problems, including autism. "By the time they get here, the vast majority of parents have thought it through that their child may have autism," Ramer said. "At times, it's a relief when a family finally has an answer."

She offers them hope and refers them to services throughout the region. "Many of the children will improve because of early intervention," Ramer said. (Some experts say the disorder is detectible as early as 12 to 15 months old.) "There's a certain core group that may not improve because they're severe cases, but, for the vast majority, they are going to experience improvement. It's not improvement, though, without painful experiences and a lot of work."

Patricia and Jeff Weiss know that for sure. Kyle, now 7, is a doting, energetic boy with an intelligence that takes many by surprise. He taught himself how to use the computer and can find Web sites on his own.

Still, he hasn't mastered potty training, has trouble sitting still and has occasional tantrums -- common behaviors for children with the disorder. Whenever possible, he tries to flush objects --
mostly toothbrushes -- down the toilet. Once, fascinated with eggs, he quietly took a dozen from the refrigerator and cracked them throughout his bedroom.


Kyle's attention span grows through music lessons with Victoria J. Rowe, music therapist with the Living Unlimited Program in Lower Paxton Township. In addition to drums, Kyle plays the xylophone and tambourine.

"You almost have to be a step ahead of him all of the time," Patricia Weiss joked. "We've lost so many toothbrushes to the toilet. We even had to call a plumber." Still, Kyle has made
significant strides from the toddler who babbled and never spoke words the way he can today.

The family spends hours working with their son -- Mom stays at home with him, and a therapy aide is there several hours a day. He has attended music and aquatic therapy classes twice a week for nearly three years.

"He loves water, so he learned how to tie his shoes at the pool and even learned handwriting in there," she said.

Music lessons, meanwhile, have helped strengthen his attention span. Another blessing came when the family acquired Gilly, a black Labrador, through Susquehanna Service Dogs in 2004. A year earlier, when Kyle was about 3 years old, he squeezed his way through a window and was found playing in a neighbor's yard. Gilly is trained to find Kyle -- whom Weiss jokingly calls her little Houdini -- if he should ever try to sneak out of the home again.


Kyle practices handwriting in a place he's most comfortable -- the pool at HealthSouth Rehabilitation in Mechanicsburg. Here, he works with therapy assistant Esther Strader and, far right, therapy aide Emily Martinelli.

There's still a long road ahead, however, and the couple often dreams that their son will attend school full time with an aide next year. "There's a perception that, with autism, it's the end, that their lives won't get better," Jeff Weiss said, admitting he was bewildered for weeks after receiving Kyle's diagnosis. "But then you come to realize that 'OK, my son's life is going to be
different, but it's certainly not over.'"

Strength in numbers

Such strength was delivered to the Brenner family, too. Suzy and Rick Brenner along with their oldest son, Wes, invested countless hours to improve Alex's behaviors and language skills. At one point, the work took nearly 40 hours a week, with the help of several therapists. There were multiple trips to Bethesda, Md., for Alex's auditory therapy. It worked.

Not long after the therapy, Alex, then 9, started to speak more. On a night Suzy Brenner won't forget, he gathered all of the family pictures in the living room." I didn't know what he was going to do. He started pointing at our photographs and naming each one us," Brenner said. "I said, 'That's right, Alex. That's your family.'"

"Family," Alex repeated.

Today, Suzy Brenner, a board member and a past president of the Autism Society of America's Greater Harrisburg Chapter, has become a go-to person for parents whose young children recently have been diagnosed with the disorder. Customers who walk into her Mechanicsburg hair salon -- many of them autistic children and their parents -- are greeted with a large posterboard that contains facts about the disorder and photos of Alex, now 17.

He attends the NHS Carlisle Autism School and recently started his first job, folding pizza boxes twice a week at a local restaurant. He volunteers at church, filling pews with prayer cards and offering envelopes.

His favorite food is pizza, and it's also his favorite word. Like many autistic children and adults, he repeats the word throughout the day.

Alex will remain in school until he's 21. After that, Suzy Brenner thinks that he may one day be able to live in a group home among peers, cook on his own and work. "There are so many milestones that I never thought we'd see when he was 6 or 9 years old," said Suzy Brenner, who helps organize a picnic every year for the local ASA chapter, which has about 150 active families and 400 people on its mailing list. The group meets monthly, has a lending library and
offers year-round activities to connect families faced with autism

"Early intervention is the key," Suzy Brenner said of her advice to anyone thinking his or her child is showing signs of the disorder. "Don't ever ignore that gut feeling. If you think something is wrong, there most likely is. Early intervention has proven, though, that these kids can make it."

How are Autism Spectrum Disorders diagnosed?

Because a medical test doesn't exist for Autism Specturm Disorders or "ASDs," physicians look at a child's behaviors to make a diagnosis.

A thorough evaluation may include observations, parent interviews, developmental histories, physchological testing, speech and language assessments and, possibly, the use of one or more of a variety of autism diagnostic scales. Typically, a child with ASDs may exhibit the following behaviors, according to the Centers for Disease Control and Prevention's Autism Information Center:

• Not play "pretend" games, such as trying to feed a doll.

• Not point at objects to show interest. For instance, a child might not point at a train rolling by or an airplane flying overhead.

• Not look at objects when another person points at them or not show an interest in other people at all.

• Avoid eye contact and want to be alone.

• Have trouble understanding people's feelings or talking about their feelings.

• Prefer not to be held or cuddled or might cuddle only when they want to.

• Appear to be unaware when other people talk to them but respond to other sounds.

• Are very interested in people, but not know how to talk to, play with, or relate to them.

• Repeat words or phrases said to them, or repeat words or phrases in place of normal language.

• Repeat actions over and over again.

• Have trouble adapting to changes in their routine.

• Exhibit unusual reactions to the way things smell, taste, look, feel or sound.

• Lose skills they once had, such as not saying words that they once used.

Source: http://www.pennlive.com/bodyandmind/..._and_hope.html

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