Friday, November 19, 2004

Cure Autism Now - Walk Now - Tomorrow in Houston

This Saturday, November 20, my family and I will be participating in a veryspecial event, WALK NOW benefiting the Cure Autism Now Foundation. It is a 5K walk and community resource fair with the proceeds going to further the search for causes and cures for autism. Autism is a devastating disease affected over 1.5 American children and their families. 1 in every 250 children is newly diagnosed with autism.

You may be wondering why Cure Autism Now and WALK NOW are so important to me and my family. My involvement stems from a very personal and deep emotional contact with this complicated disease.

My 5-year-old son, Sean, was diagnosed with a form of Autism, Asperger's Syndrome, two years ago. I am very proud of Sean and impressed with his progress so far thanks to hard work on his part, our part and an excellent program within the Cy-Fair School District.

I strongly feel that I can have a direct impact on finding causes and cures for autism.
I also feel strongly that Cure Autism Now is a wonderful organization which has been instrumental in furthering autism research. In 1995, when Cure Autism Now was founded there were only 12 researches focused solely on autism. Today there are over 300. That is progress. WALK NOW gives us a tangible way to help the nearly 1.5 million other Americans affected by autism and related disorders.

I am asking for your support in helping us raise money for this worthy cause. Any contribution you are able to make would be greatly appreciated, but I ask you to give big as there is a big need for further research. My personal goal is to raise $500.00 for Cure Autism Now and I hope to far exceed that goal.

It is easiest to donate online by going to our personal webpage at Sean's CAN page.

If you are unable to donate online, you can print out a donation form from that page. All checks should be made payable to Cure Autism Now.

I look forward to hearing from you. I thank you very much!


Visit my Autism/Asperger's Syndrome blog -

Thursday, November 04, 2004

Group responds to rising autism rate

Group responds to rising autism rate
By Marjorie Wertz
Monday, November 1, 2004

Fraternal twins Connor and Mackenzie Baker don't understand jokes, sarcasm or the subtleties of social interaction.
Mackenzie didn't speak until he was nearly 3 years old; while Connor was the exact opposite: screaming loud and often.

The Greensburg boys were diagnosed as high-functioning autistics when they were 5 years old.

"It was their behaviors that led to the diagnosis," said Deb Carpenter, the twins' mother.

There is no blood test or screening that detects autism, a spectrum disorder that includes autism, Asperger's syndrome, and PDD-NOS or pervasive development disorders not otherwise specified, said Howard Carpenter, Deb Carpenter's husband and the stepfather of Connor and Mackenzie. Howard Carpenter is the executive director of Aboard Inc., Advisory Board on Autism and Related Disorders.

"Autism is a neurological disorder. The cause is not yet known and there is no cure," Howard Carpenter said. "Most kids who are diagnosed with autism appear normal. Some time over the course of their early years, they begin to regress, lose their speech and begin to manifest severe impairments. They have social interaction problems and tremendous sensory problems.

"The bottom line is when a psychiatrist or a medical professional diagnoses the child, it is done through visual observation and the behavior history they receive from the parents."

All children with autistic spectrum disorders display deficits in social interaction, verbal and nonverbal communication, and repetitive behaviors or interests.

They do not follow the typical patterns of child development. Often, children with autism will have unusual responses to certain sounds or the way objects look. Symptoms will present differently in each child.

"It is the third most common child disability today. It trails mental retardation and cerebral palsy. It is four times more common in boys than girls," Howard Carpenter said. "For every 149 normal babies born, one will have autism. The rate today is 15 times higher than a decade ago."

Connor and Mackenzie, now 11, are in fifth grade. Connor attends Brighton Day School at Pressley Ridge in Pittsburgh. Mackenzie is a student at Bovard Elementary School.

"The boys are obsessive. Mackenzie is a facts kid. He likes facts and likes to read factual books on birds, birthdays, presidents. For Connor, life is very hard. He has a hard time with eye contact and joining with other children even when he wants to," Deb Carpenter said. "They don't know when they are being annoying. Because they don't get subtleties, you have to be very cut-and-dried when speaking to them."

Mackenzie is more socially functional. The youngster learned some social behaviors while attending summer camp. Connor, Deb Carpenter said, does not function as well socially.

"Connor becomes aggressive verbally and sometimes physically. Mentally and emotionally, he is at the second-grade level," she added. "The biggest challenge for us right now, and the most frustrating, is getting them to be like other kids."

In Pennsylvania alone, there are more than 74,000 individuals diagnosed with autism. Aboard Inc. is a Pennsylvania-only organization with more than 10,000 members, most of them from western Pennsylvania. One of the goals of Aboard is to provide training workshops for parents, teachers and therapists to raise awareness of autism.

Rebecca Klaw, director of the Center for Autism at Pressley Ridge, Pittsburgh, conducted a seminar Oct. 23 at Westmoreland County Community College, on Asperger's syndrome and high-functioning autism.

"In Asperger's syndrome, the child fails to develop peer relationships, lacks spontaneity and has a lower desire to share things with others," Klaw said. "They also have a repetitive pattern of behavior and an abnormal interest in a single subject or object. But this interest could be seen as a characteristic or gift in an Asperger's child. There were many people who were geniuses but socially inept, including Albert Einstein."

Asperger's may not be diagnosed until elementary school because there is no language delay, as is evident in other autistic children.

"Children with Asperger's have difficulty deciphering body language and facial expressions. Playing is very hard for them, because playing involves constant sharing and flexibility," Klaw said. "Playing requires loyalty to friends. Children with Asperger's aren't connected to the friendship, but to the activity itself. Children with Asperger's syndrome don't really care to be like others, so they don't bend to peer pressure. However, they don't want to be ridiculed."

Additionally, Asperger's children appear to lack empathy and can be rude or tactless. They have unusual sounding speech that can be too loud, too soft or lacking inflection. Sometimes Asperger's children use words that are too advanced for their age.

"Ten years ago children with Asperger's used to be diagnosed as schizophrenic, because the children would start talking about something completely irrelevant in the doctor's office," Klaw said.

"We are striving to reduce the length of time before diagnosis," Howard Carpenter said. "Delivery of therapy must begin as soon as possible, so the child can learn to speak and learn how to interact with others. The whole idea is for that child with autism to grow up to be an independent adult."

Anti-anxiety medications may be prescribed if the child's anxiety is so acute that it limits learning. Most professionals agree that children with autism respond well to highly structured, specialized therapy programs.

"There is a consensus within the scientific community that autism has a genetic root," Howard Carpenter said. "What researchers are focusing on is what is triggering that genetic root. There is something triggering the manifestation of autism, whether it's vaccines, diet or the air. This disorder was ignored for so long. There has to be more research and there has to be care while we're waiting for a cure."

Deb Carpenter worries about her boys' future.

"A high-functioning autistic can function in society. There is hope. Mackenzie will be fine. Connor will not," she said.
Group responds to rising autism rate -

Wednesday, November 03, 2004

Telegraph | News | Paul Smith, the 'odd' kid' turns killer

Bullied at school for his stilted speech and learning difficulties, teenage killer Paul Smith was always seen as the "odd kid".

Like many sufferers of Asperger's Syndrome, the 18-year-old lacked social skills and hated crowded situations such as the fateful party last December.

He had a fiery temper and when Rosie May Storrie started innocently making fun of the older boy, he lost control and smothered the 10-year-old to death.

His loyal parents, Nigel and Susan Smith, claimed from the start their "vulnerable" son had been blamed for the killing because he was an "easy target".

They said ever since he was a young child he was used as a scapegoat because his condition, a form of autism, made him different from other children.

But he was the last person seen with the ballet star at the party and was incriminated by traces of his DNA found on a can of Guinness at the little girl's bedside.

A common perception of Asperger's sufferers is that they are honest and trustworthy. Smith maintained from the very start that he had not touched the youngster.

In the witness box at Nottingham Crown Court he showed no emotion and spoke in a monotone as he described his version of events on December 28 last year.

The teenager, who left school shortly after his 16th birthday to join his uncle's firm as an apprentice electrician, was only occasionally visibly frustrated as he was accused of attacking the youngster.

But Smith, who was 17 at the time of the tragedy, was polite and controlled despite what defence counsel Mrs Oldham termed his "unusual" demeanour.

Experts have found no link between Asperger's Syndrome and violent crime and traditionally sufferers were said to be more likely to become victims than offenders.

However, a lack of empathy with others and an inability to understand the consequences of their actions could lead an aggressive sufferer to lose control.

Asperger's was first identified as a separate condition in 1944 by a German doctor, Hans Asperger, who spotted similar, odd behaviours in more than one of his patients.

The subtle characteristics which make up the condition often lead to it being missed by doctors who might spot the more noticeable deficits of other types of autism.

Smith was diagnosed at the age of 12 or 13 following a spate of disruptive behaviour at his school.
Telegraph | News | Paul Smith, the 'odd' kid' turns killer

Spectrum Haven

Spectrum Haven

Teen with Asperger's Syndrome Creates Own Website for Everyone on the Autistic Spectrum

PRESS RELEASE: Teen with Asperger's Syndrome Creates Own Website for Everyone on the Autistic Spectrum