Autism Symptoms Story

Diagnosing and coping with autism
MATT TREADWELL, The Huron Daily Tribune
11/07/2005



COMMERCE TOWNSHIP — The clock on the wall reads five minutes to 4 p.m. as 3-year-old Kaitlyn Lempert runs to her family's living room window asking, "Where's Logie?"


She has her answer about 10 minutes later when her 6-year-old big brother steps off the school bus that stops in front of the Lempert's home.
"Sissy. Cuddle. Please," requests Logan Lempert before his mother can help him take his coat off after he enters his home.
"See," his mother, Donna Lempert says. "Every day, it's the same thing."
Logan's three-word demand has become a Lempert family tradition after he returns home from a long day of kindergarten. It's the cue for the family to retire to the upstairs parent's bedroom for a 15-minute cuddle session.
"It's how he unwinds from the stress of his day," Donna Lempert said. "We all lay in bed together and he burrows underneath all the pillows."
"He's like a bear," little Kaitlyn added.
That daily tradition is just one of many signs of Logan's every day struggle with autism.
"It's not uncommon for kids with autism to like to stand on their heads for a long time or burrow under things like pillows," Donna Lempert said. "They like to feel pressure. It makes them comfortable for some reason."
What Is Autism?
Logan is one of an estimated 166 children born in the United States each year to be affected with the neurological disorder known as autism.
"Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills," according to the Autism Society of America's website, www.autism-society.com.
"Autism is hard to describe because there is such a wide spectrum of what autism is," said Sara Vanmullekom, president for the ASA's Saginaw Bay Area Chapter.
"(People with autism) tend to be in their own little world. That is where they feel comfortable. Anything that is going on around them in the outside world is difficult for them to deal with — it's uncomfortable."
Like Donna Lempert, Vanmullekom has a 6-year-old with autism. And both women said an inability to speak was the tell-tale sign of the toddler's disability. They said instead of speaking, the young boys would make grunting noises and point for things they wanted.
"Noah was our fourth child, and when he wasn't starting to speak, I knew something was going on," Vanmullekom said.
But for Donna Lempert, the problem wasn't so obvious.
"Logan was our first child, we just thought he was developing a little slower than the other babies," she said. "You read in pamphlets that kids are supposed to do such and such at such and such an age, we just thought he was a late bloomer.
"When he was 3 and still not talking, I knew something more had to be going on, but I didn't know anything about autism ... That's why it's so important for people to know the signs."
Some of autism’s most common symptoms can include a child’s tendency to spin objects, insistence on sameness, sensitivity to textures, use of gestures instead of vocal language to express needs or wants, preference to be alone, or extreme emotional and physical displays.
Or, the child could appear to be deaf, Vanmullekom said.
"I used to bang on the table as hard as I could with my fist and scream Noah's name," she said. "He wouldn't even acknowledge me."
Regardless of whatever symptom an autistic child might display, his or her actions — or inactions — are the best clues.
"When people think of a special needs person, they expect to have something that they can point to and say, 'Look, that's what's wrong.' But autism isn't like that," Vanmullekom said.
"To look at my son, for example, he doesn't look like anything is wrong with him ... Children with autism look like any other children except for when they have a sensory overload. That's when they throw a tantrum — they just can't help it."
It's those tantrums that Donna Lempert said often make it difficult to take family outings — not because of her son, but because of the looks from others.
"People look at you like, 'Ugh, can't you control your kid, lady?'" she said. "They just don't know. They don't know that the child can't help it — their senses have just been overloaded by what's going on around them. You can't always predict when that is going to happen."
For example, Donna Lempert said she once took her children to ride ponies at a fair.
"I didn't know if Logan would get up there and freak out when he touched the pony or not," she said. "So, I explained his situation to the man running the ride just in case he might need to stop early ... But Logan loved it. He didn't want to stop. He kept saying, 'Horse. Again. I hoped he'd like it, but I couldn't predict it ... Every experience is like a whole new adventure."
Twenty-Four, Seven
For parents like Donna Lempert, there is nearly no time off helping her son.
"From the time he gets up until he goes to bed at night, it's a constant battle to keep him engaged," she said. "If I let up for even a few minutes, he slips right back into his own little world."
"It's easy to see," added his father, Tony Lempert. "It's just so obvious. You almost can't believe it."
With Logan in full-time kindergarten classes this year, Donna Lempert admits she welcomes the break she now gets during the day.
But while Logan is home, she spends the morning helping him get ready for school, and the evening reading with him, building puzzles, playing with educational toys, or any other therapeutic activity designed to engage his mind. And that's on top of helping to take care of meal preparation and other duties for the other two members of her family.
"Good old fashioned family meals stopped happening around here a long time ago," she said. "There just isn't the time."
And time isn't the only demand of autism, it takes its toll on family finances, too.
Each week, Logan attends two one-hour professional therapy sessions designed to help manage his autism. He goes to the Abilities Center in Commerce Township for occupational therapy aimed at his motor skills and sensory issues, and a speech therapist visits his home once a week.
His therapy bills add up to about $880 a month — none of it covered by health insurance as Michigan law doesn't require companies to pay for autism-related treatments.
Before he began attending school full time, he was enrolled in more than $1,300 worth of therapy each month to help him prepare for that major life step.
"It's like making a second house payment," Donna Lempert said. "This family is drained — we've taken out a second mortgage and our credit cards are maxed ... But like Tony says, 'We will find a way to make it happen.' We will take care of our kids no matter what the costs."
In May, residents of Huron County donated about $10,000 to help with Logan's autism treatments during a benefit fish fry at the Rapson Sportsmen's Club. It was the second such event co-organized by the boy's grandparents, Dolores and Leonard Goniewicha — a former Harbor Beach city councilman.
The Lemperts say they now are considering moving to one of the reported 17 states that require insurance to help with autism related expenses.
"It's sad, but I just don't know how much longer we can manage to get by here," she said.
Such a move would be the family's second relocation because of their children's health needs.
After Kaitlyn was born and diagnosed with cystic fibrosis in 2002 following Logan's autism discovery, the family moved from its newly constructed home in northern Michigan to Commerce Township near Novi to be closer to medical care.
Fortunately, Kaitlyn's treatments are covered by health insurance.
"It's a little funny because we waited several years to have kids after we got married. We thought we had planned pretty well," Donna Lempert said.
"Yeah, we had all the toys," Tony Lempert added. "We thought we were all set."
Still, both parents agree they'd give up everything they've had to part with all over again to see their children receive the treatments they need. And both say they are thankful to have one another's support through all the stresses life throws their way.
"I've read several places that the divorce rate for couples with an autistic child is like somewhere around 80 percent," she said. "That's scary ... It's really hard. Thankfully, Tony is so supportive. I couldn't imagine going through this alone."
Early Intervention
Despite the future hardships that might be in store, the sooner a parent can get a suspected autistic child diagnosed, the better chance pursued therapies will have to help him or her manage the disorder through life, according to the Autism Society of America.
"Discovering that your child has autism can be an overwhelming experience ... While there is no cure for autism, there are treatments and education approaches that may reduce some of the challenges associated with the disability," according to ASA's website.
Just as is the case with the numerous symptoms and severity spectrum, autism's treatments vary, too," said Vanmullekom from the group's Saginaw Bay chapter.
"That's just another one of the many mysteries of autism," she said. "We learn more and more as we go. You just have to hold on to what works best for your individual child."
The AMA reports the learning curve of autism has grown exponentially among professionals in the field as compared to a generation ago, when "many people with autism were placed in institutions."
During the 1990s, the number of documented autism cases in the United States grew 172 percent while the American population only increased 13 percent, according to the organization.
And while options on the right treatment approaches may vary for each individual person with autism, Vanmullekom said professionals agree that the earlier a child is diagnosed, the better.
"Ages 2 to 7 are the most important to begin intervention treatments," she said. "That is when the best chance is to reprogram these children because their brains are still forming. After that, habits start to really sink in."
As for the Lemperts, they say they wish they could have had Logan diagnosed sooner than age 3.
"We just didn't know about it soon enough," Donna Lempert said. "He's been doing very well with the therapies he has received ... I'd hoped he'd be able to enter full-time kindergarten by now, and he has met that goal. But still, you always wish you could do more for your kids."
She and Tony Lempert said despite how much the news your child is autistic can hurt, having him or her diagnosed as soon as you suspect the disorder is best.
"Some parents are afraid to have their children tested because they don't want their kid to be labeled as having a problem," she said. "That's just not fair to the child. They need help."
"It is hard to swallow — no question," Tony Lempert added. "I wanted a little boy who I could play sports with and who could help me with projects around the house, but Logan just can't do that. I wish he could, but he can't ... I still love him just as much. That stuff doesn't matter that much."
Donna Lempert said she hopes every day that she makes the best choices for her son's therapies so that life will become easier with each passing day.
"Sometimes I wish I could just climb inside Logan's head to see the world how he sees it," she said. "I just want to understand."

Autism Symptoms

USU program helps kids prepare for school, world
Kassi Bryner said she first started noticing something might be wrong with her son when Sam wouldn’t make eye contact with her.
At 18 months, the Logan toddler wasn’t starting to speak, unlike other kids his age. Sam was her first child, Bryner said, so she wasn’t sure what to expect.
Shortly after the initial symptoms were noticed, Sam was diagnosed with autism. Two-and-a-half years later, after more than a year of intense autism sessions, Sam “is a different kid,” Bryner said.
“If you would have seen him a year ago ...” she trailed off, shaking her head.
Sam, now 4 and expected to be able to attend regular kindergarten next year, is diagnosed with “pervasive developmental disorder — not otherwise specified” (PDD-NOS), a disorder that falls into autism’s wide spectrum.
He attends an autism preschool program at Utah State University — now with seven other children — to prepare for school and the world. Bryner and another parent, Sean Benson, met at the Autism Support Services: Education, Research and Training, or ASSERT, center Wednesday to be there when state schools Superintendent Patti Harrington visited.
“This place has just been so fabulous we’ll do whatever it takes to help it,” Benson said.
Sam is just one of several children in Utah and nationwide who have been diagnosed with a varying degree of autism. In the past few years the rate of diagnosis has virtually skyrocketed. In 1997, about 230 Utah students were served under the Individuals with Disabilities Education Improvement Act for autism. In 2003, the most available data from the Department of Education, more than 1,000 students fall into the same category. In the Logan City School District, there are 24 students with some form of autism confirmed, as of last month.
Since the summer of 2003, ASSERT has helped local children, ages 3-6, who have forms of autism. The center has been operating from grants and some state funding, and is looking to receive about $217,000 from the Legislature to continue the program. Harrington toured the facility as part of her visit with the state Board of Education to Logan this week.
“ASSERT is not something that is well-known,” she told ASSERT staff and other university employees.
She encouraged the two parents present to call local legislators — especially Sen. Lyle Hillyard — to vouch for the program’s necessity, and made it clear she was on ASSERT’s side.
“We’re moving forward together,” she said. “We are some of your best cheerleaders.”
ASSERT not only helps the eight local children who now benefit from the structured preschool atmosphere; the center has trained eight special education teachers and three related-service providers in Washington, Weber, Morgan, Ogden, Alpine, Carbon and Sevier school districts. Two classrooms have been set up in Washington and Weber districts. Karl Wilson, Utah’s State Office of Education special education director, said ASSERT’s influence in other places in the state is what may make it the most important characteristic when legislators decide what to fund.
“It’s a valuable investment because of that,” he said.
ASSERT director Tom Higbee, also an assistant professor in the department of special education, led the mini-tour, explaining how the day goes for the children and each of their student teachers. Five of the instructors are doctoral students, and each of the eight children have individual teachers who meet with them in separate cubicles throughout the day.
“The difference between these kids and the others is the amount of active instruction,” Higbee said. “It’s highly structured for a reason.”
The USU site is the “model” site, he said, but others can definitely be developed around the state. Several of the ASSERT instructors, studying either special education, speech language and pathology and psychology, go and help other children in the state after their time at USU.
Higbee said he isn’t sure if the recent spike in autism cases is due to what may be called an “epidemic,” or just the fact that doctors and educators are aware of the disorder and more able to diagnose.
“There’s a lot of disagreement among professionals about the cause of that growth,” he said. “The answer probably lies somewhere in between.”
Benson’s son, Conner, is one of ASSERT’s success stories. The first-grader is in a regular school class with minimal aid throughout the week. He’s near the top of his class in several subjects, but still struggles with communication and social interactions, Benson said.
“This has been fantastic for us,” Benson said of ASSERT. “He’s progressed so much; we didn’t know if he’d ever get this far.”
Sending a child to school is probably the best success the program could have, but not the only. As Higbee said, helping a child progress, even progressing from utter silence to being able to request items, is a success for ASSERT.