Making sense of a misunderstood disorder

It used to be considered a life sentence for parents. Doctors have been diagnosing children with "autism" since 1943, when the term was first coined and when they'd tell parents there was nothing that could be done and to prepare for the worst.

The problem is that it's 2011, and according to professionals working with autistic children in both the Czech Republic and United States, this belief, while not as prevalent, still exists.

One woman has made it her personal goal to not only disprove this theory but to give parents hope via a series of workshops through the Son-Rise Program and her own consulting company, Teach Through Play.

"I've seen so many children go from severe autism to either typical or very mild autistic behaviors, so I don't believe there is nothing that can be done," said Carolina Kaiser, senior teacher for the Son-Rise Program. "Each child is unique, so ultimately, each treatment should be unique. ... There is hope, and parents need to know this."

Kaiser is hosting a three-day workshop at Masaryk University in Brno Oct. 28-30 to help parents and educators understand more about how Autism Spectrum Disorder (ASD) affects children and how best to integrate them into normal social atmospheres starting with a one-to-one teaching therapy.

Both teachers and facilitators of Son-Rise say one of the biggest problems of ASD is the misconceptions or misunderstandings that surround it.

When people think about autism, images that come to mind are of a child who has difficulty controlling his or her behavior, is unable to communicate or even has savant-like abilities, Kaiser said. While these all are possible symptoms, it doesn't necessarily mean each child diagnosed with ASD will have these challenges, she added. Along with assuming each child can be treated the same, Kaiser said common misconceptions are that diagnosed children lack intelligence, they can't love or show affection and, most common, that autism is for life.

"Just because a child is nonverbal doesn't mean they're not intelligent or there is nothing that can be done for them," she said. "I've seen children not be able to communicate verbally, and then you put a computer or something in front of them, and they will communicate with you."

Whatever the misunderstandings happen to be, what is understood is that autism cases are on the rise. According to the Center for Disease Control, today one in 110 children in the United States has ASD, compared with one in 10,000 in 1983, when the Son-Rise Program started as part of the Autism Treatment Center of America. Because there is no specific cause or cure, the only thing left for parents and educators is treatment and support.

Because the disorder affects everyone in a unique way, there are many different schools of thought when it comes to treatment. The Son-Rise Program is a developmental, family-based program based on the experience of Barry Neil and Samahria Lyte Kaufman - the program's creators - with their autistic son, Raun. The program transformed Raun from a mute, withdrawn child with an IQ of less than 30 into a highly verbal, socially interactive child with a near-genius IQ. Raun is now director of global education at the Autism Treatment Center of America.

The program focuses heavily on the child's environment at home, with parents serving as primary teachers, and slowly integrates them into a social or classroom setting. This is slightly different from what is more prevalent in the Czech Republic, the Treatment and Education of Autistic and Communication Related Handicapped Children (TEACCH) program, in which parents don't play the central role as educators. Instead, children go to a special school for ASD and are taught to integrate from the beginning instead of easing into integration when they are ready, said Linda Cecavová, a Son-Rise facilitator in the Czech Republic.

"In the Czech Republic, the child is usually taken to the hospital for a whole week where they are tested," Cecavová added. "Parents tell me it is very stressful for them and for the child and doesn't help."

ASD is called a spectrum disorder - one that has many faces and presents itself differently in every person diagnosed. Because each child is unique, there is no such thing as a cookie-cutter approach to treatment, said Kaiser.

"Each child is unique and can't be forced into a curriculum or specific treatment because it's an individualized disorder," she said. "While professionals are great and helpful, who knows their child better than the parent? The treatment for autism needs to fit the child, so at Son-Rise, we educate parents [and teachers] on how to implement treatment on a one-to-one level."

During her workshop, Kaiser will conduct interactive teaching seminars where parents will learn about the five stages of social development - eye contact, verbal and nonverbal communication, attention span and flexibility - and how they apply to each child individually.

In addition, Kaiser will teach parents about how the Son-Rise Program can be combined effectively with other complementary therapies such as dietary changes and the Holistic Approach to Neuro Development and Learning Efficiency (HANDLE), which focuses on the nervous system and sensory stimuli.

HANDLE facilitators Paul and Jana Baptie say Kaiser's program is complementary to HANDLE treatment, which focuses on body movement, incorporating touch and balance activities and sound sequences.

"HANDLE works on the internal environment - the sensory and nervous systems - and getting the brain and body organized," Paul Baptie said. "Son-Rise helps the outside world for your child - the stress and the environment. We all know what it feels like to be overly stressed; it affects how we think and feel. That's how someone with autism feels every day."

Kaiser said the workshop will hold something of value for everyone - whether you have a child with autism, are a teacher of an autistic child or know someone who has autism.

"We [facilitators and teachers] can't make promises, and we can't tell you one program is right and the other is wrong," Kaiser said. "What I can tell parents is that this is not a life sentence, that there is hope. ... My role is to empower parents to know more about their children and to trust themselves with choosing the right treatment."

Megan Battista can be reached at
features@praguepost.com