Help With Autism

Rett syndrome symptoms include cognitive impairment and difficulty with socialization, which generally improves by the time the child enters school.  The rate of head growth is slower in those who have Rett’s and may include microcephaly (a very small head) as well as small hands and feet with repetitive hand movements such as wringing.  Girls with Rett syndrome are prone to stomach problems and up to 80% also have seizures.  About half of females are not ambulatory.  Scoliosis, failure to grow, constipation, and lack of verbal skills are also very common manifestations of Rett’s syndrome, which occurs much more commonly in girls.

Rett syndrome is one of the disorders commonly identified as being under the umbrella of autism, along with Asperger’s syndrome, sensory integration disorder, and several others. 
Autism treatments are always changing as autism awareness becomes more prevalent.

Autism information begins with the first published academic paper identifying autistic children.  The paper was published in 1943 by Leo Kanner and was titled “Autistic Disturbance of Affective Contact”.  Before Kanner’s observations were recorded, such children were being classified as emotionally disturbed or mentally retarded.  Kanner’s work pointed out that these children often demonstrated potential that did not allow them to fit comfortably into either prior diagnosis.  His response was to invent a new diagnostic category called Early Infantile Autism, sometimes called Kanner’s Syndrome.  Hans Asperger essentially made the same discoveries at the same time independently of Kanner in his academic paper “Autistic Psychopathy in Childhood”.  The difference in the subjects being studied by these two pioneers was that Asperger’s subjects had speech, so Asperger’s Syndrome is often still used today to classify autistic people who have speech.

The word “autism” already had a meaning before Kanner coined it as a diagnosis:  “escape from reality”.  It is speculated that Kanner appropriated this word because he believed that the classified children were either actually trying to escape from reality or gave that impression.  Other terms have applied to what we now call autism:  childhood schizophrenia, infantile autism, Asperger’s Syndrome, and Kanner’s Syndrome, and other autism spectrum disorders have also been identified, such as Sensory Integration Disorder.

Middle Eastern families, sophisticated genetic analysis and groundbreaking neuroscience have implicated a half-dozen new genes in autism research. More importantly, it strongly supports the emerging idea that autism stems from disruptions in the brain’s ability to form new connections in response to experience consistent with autism’s onset during the first year of life, when many of these connections are normally made.

Autism genes have been difficult to identify because the disorder is complex, with a variety of causes stemming from many possible genes or combinations of genes. In addition, since people with autism tend not to have children, most of the genes identified thus far aren’t inherited from a parent, but instead are mutated during embryonic development, making them hard to track through traditional linkage studies in families.

Just over 6 percent of the 88 families showed rare, inherited deletions within DNA regions linked to autism. These affected DNA regions varied among families, further indication of autism’s large variety of genetic causes. In all, the technique identified five chromosome deletions affecting at least six identifiable genes.

PENNSYLVANIA – Parents of autistic children would be able to pay for autism therapy and related services with private health insurance starting next year, under legislation that strikes a compromise between the insurance industry and advocates for the disabled.

The House of Representatives on Tuesday unanimously passed the measure, which also would give the state Insurance Department power to approve the proposed merger of Pennsylvania’s two largest insurance companies. The Senate’s Republican leader said Wednesday he expects that chamber to send the bill to Gov. Ed Rendell, who said he would sign it, before the Legislature’s two-month summer break.

While preparing for the birth of her daughter, Christy Rue stumbled across a concern that she is now trying to share with every parent.

The 25-year-old mother is one of thousands who have picked up the cause to promote cleaner vaccines.

“The doctors give the shots, you know, so they must be safe,” Rue said.

But the disheartening facts, she said, are children are being disabled and pharmaceutical companies are paying lobbyists to help the vaccines pass through Washington.

“I’m not against vaccines,” Rue said. “I just want them to clean up the stuff they’re putting in there and give them a safer schedule.”

To make her concerns heard, Rue and her children traveled to Washington, D.C., for the “Green Our Vaccines, Too Many, Too Soon” march and rally two weeks ago. The three were among 8,000 people that walked from the Washington Memorial to the Capital Building, holding signs demanding change and pictures of children who lost their lives from reactions to vaccines.

“It was amazing to see how many people have been affected by vaccines and nobody knows about it,” Rue said. “To look around and see all these children, these innocent children who are victims, who now are having severe issues mentally and physically.

“When we walked down Independence Avenue it was a surreal feeling because so many other Americans had done this before for an important cause. But this is not just any old cause that will be forgotten about tomorrow. These are our kids and they are our future.”

The support for clean vaccines – meaning extracting toxins like formaldehyde, aluminum, antifreeze and mercury – has been slow because a majority of the medical community denies a link between vaccines and certain disorders such as autism.

Parents of autistic children believe autism is linked to mercury-based vaccines given to children as infants.

The mercury-based thimerosal was removed from most childhood vaccines in 2001 because of the autism fears. The number of autism cases continue to rise, though, leading health officials to set aside the connection. Today, 1 in 150 children have the disorder.

“Scientist say there’s no link, but who is paying for the research?” Rue said.

One of the main battles green-vaccine promoters face are the special interest and biased ties scientists have, she said.

Along with Mothers Against Mercury, a North Carolina-based organization, Rue is spreading the word about N.C. House Bill 431. The bill, which would limit the amount of thimerosal in vaccines, passed in the N.C. House last year, but failed to make it past the Senate’s Health Committee, Rue said.

Sitting in the pediatricians office last week, Rue said she looked around and wondered how many parents knew what was in the vaccines their children would receive.

“I’m not against vaccines by any means, I just don’t want my child being 1 in 150,” Rue said. “I don’t want anyone’s children.”

CHICAGO – In positive autism news, the founders of Soaring Eagle Academy announced today that the new school for Children with Autism will open its doors in 2009. Soaring Eagle Academy brings new hope to Chicago-area families who dream of a happy future for their children with Autism.In order to open the school by 2009, Soaring Eagle is hosting a fundraising Gala on Sunday, June 29th at Venuti’s Restaurant in Addison, Illinois.

The school will specialize in educational strategies proven to help children with Autism develop the social, emotional, cognitive and communication skills they need to live successful lives. The school also brings hope to parents who fear that their child will never develop these abilities.

During most of his early childhood, Zack Barsamian sat quietly under a table lining up his toys - he didn’t understand how to properly play with them. Often his hands covered his ears. Alone in his world, he didn’t like noise and he didn’t show typical child-like expressions of joy or happiness.

When Zack was 3 years old, doctors diagnosed his condition as “mid-functioning” autism. He also suffered from liver dysfunction and had difficulty digesting food.

Five years later and after his parents spent more than $400,000 out of pocket for Zack’s treatment, the boy smiles, relates and enjoys other children in his second grade class. He plays on a soccer team. He even has a best friend.

The $400,000 paid for conventional autism treatments including speech, occupational and behavioral therapists, and neurologists as well as testing and unconventional treatment to remove heavy metals from Zack’s body, expenses to travel to New York, North Carolina, Texas and Mexico to see specialists and the cost to build an in-home clinic.

Last week the Barsamians, along with 8,500 other parents of children with autism, participated in the Green Our Vaccines Rally, in Washington, D.C.

The participants hoped to raise awareness and push for elimination of toxins in vaccines, and to change children’s vaccination schedules. Some people believe the mercury-based preservative thimerosal found in vaccines is the main cause of autism. But the Institute of Medicine concluded that there is no link between vaccines and autism after examining the results of 19 major studies.

It began with IVs for nutrition and chelation to remove heavy metals from the blood.
 
The detoxifying treatment removes toxins in the body caused by internal factors such as diet and external factors such vaccines, the air we breathe, or the water we drink, said Jennifer.

Zack’s treatment also included oxygen therapy, which increases oxygen and blood flow to the brain. Twice a year Zack and his family travel to North Carolina where Zack receives treatment in a chamber for 100% pure oxygen.

To supplement that treatment, at home Zack receives one to two hours of daily supplemental oxygen therapy in a special chamber his parents built in their basement.

But the cost the Barsamians pay for treatment is high - between $3,000 and $7,000 each month because it is not covered by insurance.

More and more kids are recovering from autism, according Wendy Fournier, president of National Autism Association, a parent-run advocacy organization located in Missouri.

“Doctors are realizing it’s medically based. If you treat them medically - treat them with what’s going on in the body, they get better,” she said. “The problem is the medical community looks at them like they have some incurable mental illness. Autism is thought of as a mysterious mental illness.”

OKLAHOMA CITY – It’s been quite the year in Oklahoma, particularly after a dodgy legislative session that resulted with the Speaker of the House giving insurance companies the opportunity to deny children who suffer from autism.  Now a group that helps people with disabilities and special needs will offer therapeutic programs to help treat the symptoms of autism in young children.

Easter Seals of Oklahoma is planning to open the Easter Seals Autism Therapeutic School in Oklahoma City after Labor Day.

The full-day program will feature therapeutic services and interaction with children without autism who attend an onsite day care. 

Hopefully, this program will increase autism awareness in the state, as well as around the United States.

As we discussed in an earlier post regarding yoga, physical activity can help an autistic child learn focus; it can also help improve their behavior.  This form of autism therapy can require a lot of research, but there are some basic factors to consider: the severity of the child’s behavior and the how simple or complicated the activity is.

Ideally, you’ll want to choose an activity that is rhythmic: running, hopping, or jump-roping.  In addition to yoga, aerobics can also be a great activity.  Many parents have suggested taking aerobic techniques and renaming them to kid-friendlier names and making a game of them. 

MARYLAND – Ginny Russo and her son Tony, 3, will be marching in the nation’s capital today to bring awareness and attention to autism.

Autism spectrum disorders affect about one in 150 children in the country, according to the Centers for Disease Control and Prevention.

“It’s a growing epidemic,” Russo said.

Russo, 33, of Mount Airy became informed about autism even before her son Tony was diagnosed when he was 2½ years old.

The rally Russo will be marching in today is to push Congress to promote cleaning up and re-evaluating the schedule of vaccinations given to children. The event, titled “Green our Vaccines,” claims that children are receiving too many vaccinations too soon.

The cause of autism is unknown, but organizations such as Talk About Curing Autism and Moms Against Mercury, which are sponsoring the rally, support the theory that there is a link between vaccinations and autism.

Russo said she doesn’t know what caused Tony’s disorder, but she has taken her son to receive alternative medical treatment and has placed him on a gluten-free diet. Russo said she has seen results in Tony, and that’s good enough for her.

Russo said autism is the common term for autism spectrum disorders that include Asperger syndrome, Rett syndrome and other specific diagnoses.

ASDs are defined by the CDC as developmental disabilities that cause substantial impairments in social interaction and communication and the presence of unusual behaviors and interests.