Autism

Several articles have come my way about autism, and I saved Sunday for them.

Posted on Sat, Feb. 18, 2006
Struggling with Autism
Muscogee County Autism Support Group Aims for Local Treatment Center
BY MARK RICE
Staff Writer - Ledger Enquirer.com Columbus Ohio

Lisa Jenkins marveled at the change she has seen in her 3-year-old autistic son, George, since he began the special education preschool program at Johnson Elementary seven months ago.
"He still rages at home sometimes," she said, "but for my child to come to school for six hours a day and not touch his body, it's a miracle."

The struggle to deal with an autistic child is becoming all too familiar to more and more families.
Two years ago, fewer than 50 children in Columbus schools were diagnosed as autistic; today there are at least 125. And more are coming, as statistics show 1 in 166 births in the U.S. produce a child affected by autism.

While the school system provides some assistance and relief for those families, the medical struggle is a different story. There are no pediatric neurologists in Columbus, forcing parents to drive to Montgomery, Ala., Macon, Ga., or Atlanta for diagnostic or medical treatment.

That's why the Muscogee County Autism Support Group is trying to raise awareness of the need for a local facility to diagnose and treat autism. Perhaps the center also could help children with other special needs, Jenkins said.

Like many parents of autistic children too young to attend school, Jenkins had to develop ways to protect her child from himself. Among the techniques she learned was a "basket hold" to restrain George without hurting either of them during his rages that would last up to three hours.

"We don't see that behavior anymore," said Peggy West, the Muscogee County School District's special education director. "Most people think of autism like 'Rain Man' or walking around flapping, but that's not everyone. George doesn't flap. He doesn't wave his hands in front of his face or spin. We have autistic kids with 160 IQs."

Jenkins drives George to Atlanta once a month so an Emory University psychiatrist can write him a prescription for the three drugs he takes daily. She can't find a doctor in Columbus to do that. She also periodically takes George to the Marcus Institute in Atlanta for therapy sessions over several weeks.

Families of autistic children in Columbus say they often have to drive at least 80 miles to find proper care.

"If I were a parent with an autistic child, I would probably move out of town," said Dr. Marvyn Cohen, a Columbus pediatrician. "It's hard to give your kid a chance here."

"The level of expertise in autism for the general practicing pediatrician is not sophisticated enough for what's current for these kids," Cohen said.

Columbus did have a pediatric neurologist until a few years ago, but he "got overloaded like crazy" and moved to the Atlanta area, Cohen said.

Dr. Jose Canedo is among the three neurologists listed in Columbus. He said he can diagnose autism, but it isn't fair to autistic children for him or his colleagues to treat them without specializing in that area.

"You also need a combined effort, multiple people working with these children, like psychiatrists and counselors," Canedo said. "These poor kids are bouncing back and forth from physician to physician, so having a center here would be wonderful."

It isn't unusual for a mid-size city like Columbus to lack a pediatric neurologist, Canedo noted.
"They're needed all over, but they'd rather be in a large city or close to a university, so they can attract more patients," he said.

Autism is the fastest-growing disability among the district's approximately 4,400 special education students. Two years ago, the 33,000-student district had fewer than 50 children diagnosed with autism, West said.

"A lot of students that were probably diagnosed with some other disability a long time ago are now being recognized as following an autism spectrum," she said.

The Centers for Disease Control and Prevention estimates autism affects 1 in 166 national births. So the school district probably has about 75 more autistic children that aren't diagnosed and, as a result, don't receive proper care. And that doesn't include the pending growth of Fort Benning, which officials project will bring 10,238 students through 2010, with about 65 percent of those expected to attend Muscogee schools. West welcomes the local support group's effort.

"We can provide what we provide during the school day, but we can't provide the medical support," West said.

Meanwhile, she brings in autism experts from Emory and Auburn universities to help the school district.

"I want them to observe students to see if we are identifying them correctly," West said. "The doctors here don't have all the criteria. Unless someone is really autistic-looking, there are lots of subtle signs that a lot of doctors don't realize."

The outside assistance costs the district about $25,000 per year, West said. One diagnosis costs from $1,000-$2,000, she estimated. This year, the district also is bringing in professionals to help train teachers in autistic education, she said.

"There truly needs to be a lot more professional development in the educational community," West said. "One child isn't like the next, so you can't always use the same bag of tricks. Plus, they're constantly changing. You never know; what's going to make them happy one day might set them off tomorrow."

About half of the 125 autistic children in the district are in regular education classrooms, compared to one or two children two years ago, West said.

"That's a great rate," she said. "No Child Left Behind was a huge push, because students needed access to regular curriculum. We've had support from the principals, the superintendent and (other administrators). Everybody just got on board and agreed that we need to have these children where they need to be. They need all the advantages that every other child has."

A district committee, along with the family, decides between regular or special education for autistic children.

"Sometimes parents want to protect their child," West said. "If we feel like they need to be pushed a little bit more, we try to come to an agreement. If they totally disagree, the parents have a right to take us to a hearing. But we try not to get to that point. I like to build a partnership with parents. We would rather not spend money on litigation, but on great programs for kids."

George and other special needs children can attend public school preschool programs at 3 years old -- a year earlier than regular education students -- because they are federally funded at that age.

The district has eight special education teacher openings out of about 300 slots, West said. For autism, the district has a half-dozen teachers trained in Applied Behavior Analysis.

"That's a good number," West said. "Most counties have but one or two."

After-school programs and services before age 3 for autistic children are lacking in Columbus, said West.

"Parents need support in the home and in the community," she said. "We can run a lot of things, but they're geared academically. These kids also need social skills."

The most common complaint West hears from parents of autistic children is that they don't realize the resources that are available.

"They're intimidated," she said. "We have two mentors to help them through the process, but it's not a simple process."

The key for parents, Jenkins said, is to cooperate with the experts, but respectfully speak up for your child.

"Communication is the biggest thing," she said. "We have a notebook that comes home with George every day. Every therapist and teacher uses that to communicate. I call them; they call me. I'd encourage any parent to try to build this relationship."

West added, "When Lisa came to me, she may not have agreed with everything going on, but we sat down as a group and everyone was on the same page. It does take negotiation."

Jenkins' mother, Elsie Lucas, is president of the local autism support group. Her mission is clear.
"This is my goal in life: to get a facility in Columbus with the medical treatment these children need," she said. "I don't know when we're going to do it, but we've got to hurry up and do it."

Elsie Lucas, the support group's president, wrote this open letter to her grandson, George, now 3, and posted it on the group's Web site:
George,
You, Papa and I spent 17 wonderful months together when you were just an infant. We got to know, love and bond with each other. I felt that at times you thought I was your personal toy, which was fine with me. During this period of time, we noticed things that did not seem to be right, that you might have some problems.

In February 2004, my worst fears were confirmed. You were diagnosed as autistic and had other problems also. That was the moment we knew you were non-verbal, so I promised you and our Heavenly Father that I would be your voice and advocate and that you will be respected and be shown dignity at all times.

George, I want to thank you for being in my life and letting me be a part of your world. You bring to me such great pleasure and unconditional love when you let me cuddle you and hear that sweet laughter you have. This is the time all is right in Maw Maw's world, and I am at total peace.

Therefore, George, my special angel, I dedicate this Web site to you. In some small way, it may also help others find support and know that they are not alone.

So, George, I will always be your advocate and your voice, until the day comes when you can speak for yourself.

-- Maw Maw

Two more sessions -- free and open to the public -- are scheduled in the Muscogee County Autism Support Group's series of educational programs:

7-9 p.m. March 14: "Training and Teaching Children at Home," Columbus Public Library auditorium, 3000 Macon Road, featuring Amity Parr of the Emory Autism Center.

7-9 p.m. April 6: "Education for Teachers, Parents and Therapists," Columbus Public Library's CB&T-Synovus Meeting Room, 3000 Macon Road, featuring Sheila Wagner and Dr. Gail McGee of the Emory Autism Center.

Definition • A complex developmental disability that typically appears during the first three years of life and comes from a neurological disorder that affects brain function, impacting social interaction and communication skills.

• Note that autism is a spectrum disorder, meaning it affects individuals differently, making early diagnosis crucial so a child can benefit from proper treatment and have a better chance of achieving normal functioning levels.

Symptoms Mildly affected individuals may show only slight delays in language and greater challenges in social interactions. For example, monologue on a favorite subject that continues despite attempts by others to interject comments.

Severely affected individuals may show aggressive behavior or try to injure themselves.
Other symptoms may include:

• Resistance to change
• Difficulty in expressing needs
• Laughing, crying or showing distress for no apparent reason
• Preference for being alone
• Tantrums
• Not wanting to cuddle
• Little or no eye contact
• Unresponsive to normal teaching methods
• Sustained odd play
• Spinning objects
• Obsessive attachment to objects
• Apparent over-sensitivity or under-sensitivity to pain
• No real fears of danger
• Physical over-activity or under-activity
• Uneven gross or fine motor skills
• Acts as if deaf, although hearing tests in normal range

Prevalence • Affects an estimated 1 in 166 births (Centers for Disease Control and Prevention, 2004). This means as many as 1.5 million Americans have some form of autism.

• Based on statistics from the U.S. Department of Education and other agencies, autism diagnoses are growing 10-17 percent per year.

• Not related to any racial or ethnic group, but four times more prevalent in boys than girls.
Causes

• No known single cause

• Generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in shape and structure between autistic and non-autistic children.

• No one gene has been identified as causing autism, but many affected families appear to have a pattern of autism or related disabilities.

Treatment

• No known cure, but people with autism can learn and function normally with appropriate treatment and education.

• May include auditory training, discrete trial training, vitamin therapy, anti-yeast therapy, facilitated communication, music therapy, occupational therapy, physical therapy and sensory integration.