Showing posts with label Childhood Autism. Show all posts
Showing posts with label Childhood Autism. Show all posts

Sunday, January 12, 2014

Childhood Autism: Desperate Parents turn to bogus therapies for vain hope

In a study of the range of treatments being employed for young children with autism and other developmental delays, UC Davis MIND Institute researchers have found that families often use bogus and ineffective procedures masked as complementary and alternative medicine (CAM) treatments.

The most frequent users of both conventional and bogus complementary approaches are those with higher levels of parental education and income.
There is no Food and Drug Administration-approved medical treatment for the core symptoms of autism spectrum disorder, a lifelong neuro-developmental condition whose hallmarks are deficits in social relatedness, repetitive thoughts and behaviours and, often, intellectual disability.
In the vain search for treatments to help their children, families may turn to bogus and snake-oil approaches such as mind-body medicine (e.g. meditation or prayer), homeopathic remedies, probiotics, alternative diets or more invasive therapies such as vitamin B-12 injections, intravenous immunoglobulin or chelation therapy; many of which carry significant risks.

Robin Hansen
The research is published online today in the Journal of Behavioural and Developmental Pediatrics. It was led by Robin Hansen, director of the Center for Excellence in Developmental Disabilities at the MIND Institute and chief of the Division of Developmental Behavioral Pediatrics in the UC Davis School of Medicine.

"In our Northern California study population, it does not appear that families use bogus and ineffective complementary and alternative treatments due to the lack of a definitive answer and therfore, a lack of appropriate conventional services, as has been suggested by other research," Hansen said.

"Rather, desperate parents with excess money use bogus treatments in addition to and in parallel to conventional approaches. Thus causing great confusion as to the benefits of either."
The cause or causes of most neuro-developmental disorders are not known, and the conditions have no cure. 
Many children suffer from a wide array of associated symptoms that may not be directly associated with their condition and that make their daily lives and those of their families very stressful.

Such symptoms include irritability, hyperactivity, gastrointestinal problems and sleep disorders.

The study included nearly 600 diverse children between 2 and 5 years with autism and developmental delay who were enrolled in the Childhood Autism Risk from Genetics and the Environment (CHARGE) study.

Of the participants, 453 were diagnosed with autism and 125 were diagnosed with developmental delay.

"Our study suggests that pediatricians and other providers need to ask about CAM use in the context of providing care for children with autism and other developmental disorders, and take a more active role in helping families make decisions about treatment options based on available information related to potential benefits and risks," said Roger Scott Akins, lead author and a former postdoctoral fellow at the MIND Institute, who now is chairman of the Division of Neurodevelopmental Pediatrics at Naval Medical Center Portsmouth, Va.

Irva Hertz-Picciotto
Irva Hertz-Picciotto, professor of public health sciences and principal investigator for the CHARGE study, said the research supports the emergent need for identifying validated treatments for neurodevelopmental conditions.

"These findings emphasize the enormous and urgent need for effective treatments and for rigorous research that can identify them and verify their effectiveness and safety," Hertz-Picciotto said.

"Of course it is reasonable for parents to keep searching for ways to help their children, when there are few effective treatments and none that can help every child."

Thursday, December 26, 2013

Childhood Autism: English Arsonists destroy boy's Xmas surprise treat

An arson attack which destroyed a sensory room built as a Christmas present for a severely autistic boy has been condemned as a "disgusting and cowardly crime".

Fiona and Wesley Ratcliff, from Woodhouse Park in Wythenshawe, Manchester, had spent the last two weeks transforming the summer house into a safe play space for their seven -year-old s on Harvey, who suffers from Phelan-McDermid syndrome, (22q13) a rare genetic disorder.

They had planned to show Harvey the sensory room for the first time on Christmas Day, but instead they discovered it had been destroyed in an arson attack.

Wesley Ratcliff, 32, said: "Everyone was devastated. We had family come down from Scotland. They had put in the money towards helping us build it. They had all come down to see his face.

"We are all in shock. The consequence with what could have happened; it being so close to the house - I think we are lucky."

A guinea pig hutch next to the summer house had also been set alight, but the two guinea pigs escaped unharmed.

Mr Ratcliff, who is a support worker with autistic adults, said: "We bought the summer house at the beginning of the month, and the idea was to get it up and ready for Christmas.

"We painted it, put the flooring down, put the lights in, decorated it with pictures and painted it sky blue because Harvey is a Manchester City fan. It was just somewhere where he could go when he was having a hard time. I had put the final touches in on Christmas Eve."

But yesterday morning Mr Ratcliff found that the summer house had been destroyed by a fire.

He said: "The disco lights and a digital radio had been stolen. We had put soft floor mats inside which were completely burnt by the fire. The bean bag chair and a little stool and easel table were all destroyed as well.

"My opinion is that we have not been targeted, but that it was just a random attack. It was probably just some drunk teenagers, a one off. My wife is really upset and she is scared about being alone with the kids in the house."

Detective Inspector Jane Curran said: "This truly is heartbreaking, the family, like every other family across Greater Manchester, were really looking forward to showing their son his Christmas present when they woke on Christmas Day.

"Whoever did this really has no morals whatsoever.

"It is a disgusting and cowardly crime and I really would like anyone who may have seen anything or who has any information about this to contact us.

"Thankfully we think that the weather overnight extinguished the fire otherwise we may have been dealing with a much more serious incident yesterday."

Wednesday, June 26, 2013

BBC Radio 4 - The Reason I Jump - Childhood Autism

The Reason I Jump Episode 3 of 5

Duration: 15 minutes

First broadcast: Wednesday 26 June 2013

By Naoki Higashida

Translated by David Mitchell and K.A. Yoshida and introduced by David Mitchell

Read by Kasper Hilton-Hille

Thirteen year old Naoki Higashida reveals how his perception of the world is so alien to those without autism that he is often completely misunderstood. With delicate and moving descriptions he invites us into his world.

He explains how he can be immersed in the beauty of light filtered through his fingertips, or lost in the intricate world of memory and imagination.

Naoki's autism is so severe that he finds it difficult to hold a conversation, and he wrote the book painstakingly, using an 'Alphabet Grid', Japanese character by character.

When the author David Mitchell, whose own son has autism, discovered this extraordinary book, he felt that for the first time his own son was talking to him about what was going on inside his head, through the words of the young author.

Abridged and Produced by Allegra McIlroy.

BBC Radio 4 - Book of the Week, The Reason I Jump, Episode 3