Monday, 25 June 2012

Autism could be triggered by very low doses of anti-depressants or other chemicals found in water supply - Daily Mail

Just traces of drugs appear to bring on disorder
Scientists test fish swimming in water contaminated with low levels of medication
Disorder appears to be combination of environmental and genetic factors
By Emma Reynolds

Autism in genetically vulnerable people could be triggered by very low levels of chemicals found in the water supply, researchers have discovered.

Experts from the University of Idaho in the US were 'astonished' to find that just traces of common medication such as anti-depressants can bring on the disorder.

They made the discovery by observing the changes in the genetic pathways of fish swimming in water contaminated with psychoactive drugs.
Flushed away: Traces of psychoactive drugs found in our water supply could trigger developmental disorders, scientists believe

Lead scientist Dr Michael Thomas said: 'While others have envisioned a causal role for psychotropic drugs in idiopathic autism, we were astonished to find evidence that this might occur at very low dosages, such as those found in aquatic systems.'

The fish were exposed to two kinds of anti-depressants - Prozac and venlafaxine - and a drug used to control seizures, called carbamazepine.

Concentrations were comparable with the highest estimated environmental levels.

Fascinating find: Scientists examined fish swimming in water contaminated with small doses of anti-depressants or anti-seizure drugs


They found patterns of gene activity in the fathead minnows that mimicked those seen in humans susceptible to the developmental disorder.

Autistic spectrum disorders begin in childhood and last through adulthood.

Symptoms include problems with social interaction, an impaired ability to communicate and unusual patterns of thought and physical behaviour.

There is no cure for ASD but a wide range of treatments can help improve symptoms.

The number of cases of ASD has increased over the past 20 years, but many believe this is due to improved rates of diagnosis.

The findings, published in the online journal Public Library of Science ONE, suggest a potential environmental trigger for autism in genetically vulnerable people, the authors of the study claim.

It could radically change treatment for the one in 100 children in England who have autism, improving doctors' understanding of how to prevent or treat the disorder.

The genetic pathways affected were the same as those associated with 'idiopathic' autism spectrum disorders, whose cause is unknown.

Experts suspect the disorders were brought about by a combination of genetic and environmental factors.

Caroline Hattersley, Head of Information, Advice and Advocacy at The National Autistic Society, said: 'It’s important that we expand research into the causes of autism. We know that environmental and genetic factors have some role to play, but our understanding is still very limited as it’s such a complex disability.

'However, we need to be cautious when looking at these particular findings. There’s simply not enough evidence to draw any firm conclusions and so people should not be alarmed by this research.'

View the original article here

Sunday, 24 June 2012

How to care for a child with autism - Daily Mirror

It’s incorrect to label to autism as one thing. It’s a spectrum of disorders and every child is different

Animals help sufferers cope with negative emotions

A friend of mine has a daughter with autism and I have watched first-hand the highs, the lows, the trials and tribulations of bringing up a child with the condition, which, so far, has no cure.


What has saved my friend, and her marriage, is that she and her husband have never defined their daughter (I’ll call her Tanya) through her condition.


They never refer to her as autistic. She’s a very bright, quirky, funny child so they concentrate on her great qualities and try to cover for her failings.


For my friend it was difficult from the moment Tanya was born. She noticed Tanya wouldn’t make eye contact with her (or anyone) and when she tried to cuddle her she would wriggle, trying to escape, until she was put down.


It’s incorrect to label to autism as one thing. It’s a spectrum of disorders and every child is different.


So a more accurate name is autistic spectrum disorder (ASD) and ranges from Asperger syndrome (the mildest form) to full-blown autism.


The whole spectrum affects more than half a million people, around one in 125, who find social interactions problematic, and have difficulty working out the motivation and meaning of people’s behaviour. As a result, they can get aggressive with frustration.


When Tanya was first diagnosed, there was a strong bias towards boys but now more girls are being diagnosed as now we know how girls with ASD behave.


Because girls are born able to read expressions, are faster than boys to talk and more able to mimic how other people act in social situations, they’re able to hide their autistic traits.


My friend’s daughter was solitary, obsessive, lost in her own world and difficult to have a conversation with. So they made a family decision to get a dog, which proved to be somewhat of a miracle.


She became inseparable from her dog which brought out her tender side and she started to recognise her emotions for the first time.


My friend decided after such success with their dog, to go one step further and introduced her daughter to a pony.


Well, she has flowered. We know being with a horse changes our brainwaves and it has changed Tanya.


She has calmed down, become sociable, more focused and in touch with her emotions. Horses are very empathetic, and her pony has helped her cope with negative emotions.


It’s wondrous to see.


View the original article here

Saturday, 23 June 2012

Worlds first autism show offers a chance to shine - The Independent

Yesterday an exhibition of a different order was getting under way. The Autism Show, which is believed to be the only event of its kind in its world, aims to show autistic people can shine in all areas of life.

Featuring more than 90 exhibitors from specialist toymakers to care providers and with one of President Obama's chief advisers on disability issues as a guest speaker, the show is focused on bringing autism into the open.

"If society wants autistic people to play a part, they have to let us be who we are in all areas of life," said Steve Barker, a concert flautist who was diagnosed with autism late in life and also has Tourette's Syndrome. "Not just where it's convenient."

Mr Barker, whose orchestra is resident at the Sage concert hall in Gateshead, is speaking at the event on the link between autism and creativity. Yesterday he demonstrated how the obsession with structure and pattern that goes into creating works of art, in particular music, was mirrored in the workings of the autistic mind. "I feel fine when I'm on the stage. Society is willing to tolerate me on a stage. It's when I come off the stage that it's not so easy, he said. "If society is willing to take typical people with all their good and bad points, then why not the atypical people too?"

The Autism Show was set up by husband and wife Geoff and Nargis Soppet last year, after their son was diagnosed with autism at the age of four. "When the diagnosis came through, we were like everyone else," said Geoff. "We knew very little about autism and didn't know where to turn. We knew from personal experience that the need for something like this was massive."

Ari Ne'eman, president of the Autistic Self Advocacy Network and a member of National Council on Disability, which advises the White House on disability policy, said it was time to change policies that treated people with cognitive disabilities "like children".

"It is about self-advocacy," he said. "We should not impose 'normalcy' in an autistic person but rather allow people with cognitive disabilities to communicate what their own needs are."

Jackie Hough, 48, from Leicester, whose nine-year-old son has autism, said that the event the event showed that people were becoming more willing to talk openly about the condition.

"There is just an amazing wealth of information here," she said. "The most important thing is to learn from other parents, whose support makes you more confident. Local support networks are vital and this allows all of them to come together and share their thoughts."

The organisers hope to take the show to other cities around the country.

View the original article here

Friday, 22 June 2012

The Curious Case of Autism and MMS - Huffington Post

I'm going to say something radical, something that may shock you. Brace yourself. Are you ready? Here goes:


It's not a good idea to make children drink bleach.


If you're not familiar with the autism community, you may wonder why my statement would ever be considered controversial. Unfortunately, in the autism community, where there are disagreements about everything, even this seemingly straightforward statement causes arguments.


The controversy, such as it is, began during the Autism One conference, held in Chicago from May 23-27. The conference is a one-stop shop for parents looking for alternative treatments for autism, and it featured some of the most prominent supporters of the idea that vaccines cause autism, including discredited scientist Andrew Wakefield and celebrity autism mom Jenny McCarthy.


But the Autism One presentation that may have gotten the most attention this year was this one, about a treatment called MMS. In it, Kerri Rivera, the founder of a "Biomed-based Autism Clinic in Latin America," explained "how MMS (chlorine dioxide) has become the "missing piece" to the autism puzzle" and how she has used it to recover 38 children in 20 months.


MMS, it turns out, stands for Miracle Mineral Solution. Go to the MMS website, and you'll find that, "The answer to AIDS, hepatitis A, B and C, malaria, herpes, TB, most cancer and many more of mankind's worst diseases has been found." These kinds of expansive, evidence-free claims are a sure sign of quackery, and identifying MMS as snake oil is no harder than realizing that $23 million is not waiting for you in a Nigerian bank account.


Unlike some kinds of pseudoscience, though, MMS has the potential to be quite harmful. Check out the slides for Rivera's presentation, and you'll find that MMS is a combination of sodium chlorite and citric acid which, when mixed together, releases chlorine dioxide. MMS, in other words, is bleach. Rivera recommends giving it orally up to eight times a day. There's also a protocol for enemas, applied two to three times per week, and baths, which can be taken every other day.


Rivera's own slides admit that MMS can cause fevers, but she calls this a "good thing" and recommends giving an enema every day during the course of a fever. She also talks about what to do if the child suffers a Herxheimer reaction, which can cause fever, chills, hypotension, headache, hyperventilation, elevated heart rate, and muscle pain.


If you don't find all of that appalling enough, you can read this testimonial from the parent of a non-verbal autistic boy who is using MMS. The MMS is causing vomiting and diarrhea, but the parent is frustrated because the non-verbal boy can't give any feedback about how he's feeling. Well, how do you think he's feeling?


Let's state the obvious: There is no reason to give bleach to any child, for any reason. There is not a shred of scientific evidence that MMS is an effective treatment for autism. Some purveyors of quackery have spotted a lucrative market and are trying to take advantage of it. But their protocol is far closer to child abuse than it is to effective medical treatment.


Sadly, Autism One and those who attend it have had a very hard time recognizing these simple facts. In a post at Age of Autism, Julie Obradovic tries to defend MMS without actually defending it. Instead, she mentions that Autism One presenters included M.D.s, Ph.D.s, and a Nobel Laureate. But the presence of smart people at a conference that promotes quackery doesn't change the fact that it's promoting quackery.


Second, Obradovic argues that Autism One "is loaded with good people, good parents, and great doctors who are willing to suffer personal attacks in order to make progress in the medical treatment of our very sick kids." Whether or not this characterization is accurate doesn't really matter. Again, the motivations of the people at Autism One are irrelevant to the subject of MMS. MMS is the worst kind of quackery, and Autism One gave it a forum.


What's happened is that MMS has gotten caught up in the same arguments that always divide the autism community. Many bloggers have for years attacked Autism One specifically and alternative treatments generally (and in my view rightly so -- there are many dubious treatments besides MMS promoted at the conference). Many people who use those treatments have attacked right back. And so it is, reflexively, with MMS.


But I want to put those arguments aside for the moment. Forget all the divisions in the autism community and just think about MMS. If you heard about this treatment and didn't know what it was for, what would your reaction be?


To be fair, a few commenters on the Age of Autism post have done this thought experiment and have called out MMS for what it is. But there ought to be more than a few.


The issue here is not about what causes autism, how to treat autism, or whether autism can be cured. The issue is not about autism at all. The issue is simply whether you believe it's OK to force bleach down children's throats or up their colons.


There are many things to argue about in the autism community. MMS isn't one of them.


If you're against MMS, you can sign this petition at Change.org, which asks the FDA, the Federal Trade Commission, and the Department of Health and Human Services to issue cease and desist orders on the selling of MMS.

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View the original article here

Thursday, 21 June 2012

Treating autism patients in emergencies presents challenges - Pittsburgh Post-Gazette

By Pohla Smith / Pittsburgh Post-Gazette

The bright lights and noise in an emergency department or examination room can disturb and upset a patient with an autism spectrum disorder; so can the exam itself if the doctor does not use the proper approach.

Unfortunately, caregivers of patients with autism frequently report that a trip to the hospital can turn into a distress-filled struggle, getting in the way of proper treatment, according to a recently published online article by five emergency physicians, including three from Allegheny General Hospital.

Doctors need to understand autism, which is a range of complex neurodevelopment disorders, in order to help their patients, the article says. Overreacting to light, sound and touch is a common behavior found in people with autism. Some may not answer to their names and avoid eye contact with others. Responding to questions from a medical professional also may be difficult because people with autism often cannot interpret social cues such as tone of voice or facial expressions. Many children and adults with autism also make repetitive movements that may seem distracting during a medical exam or treatment, such as rocking and twirling, or that may threaten to harm themselves, such as biting or head-banging.

"Educational initiatives that make general physicians aware of the complexities of diagnosis and management of patients with an ASD are needed," the doctors write in Post Graduate Medical Journal.

"The rising prevalence of patients with an ASD makes it imperative that the general healthcare community becomes aware of the multidimensional nature of the ASD spectrum of illness."

The article, based on a survey of existing literature on how general physicians may handle patients with autism, provides common-sense tips on their care.

Most important, said lead author Arvind Venkat of Allegheny General, is "to listen to the caregiver and listen to the patient to the extent possible. They're very unique in how they interact. To take a knee-jerk approach and say this is how [doctors] react to a patient ... this is not the way to go. You really need to take time to talk to the caregiver to speak with [him about] how can we treat the patient in a way that's productive and not cause the conflict and stresses that we talked about."

That means finding out from the parent or caregiver techniques for touching the patient and what words to use, as well as what textures or smells that should be avoided.

It also means taking a detailed case history from both caregiver and patient, one that includes baseline behavior, communication ability, degree of sociability, dietary habits, pharmacological history, vaccination and menstrual history and sleep patterns, the article says.

Next important, said Dr. Venkat -- who has experience dealing with pediatric and adolescent patients from his medical training days and his emergency work -- is telling all the staff who will come in contact with the patient everything learned from the talk with the caregiver.

"The third part is you need to be willing to accept there are certain techniques that are very important ... an unorthodox way to approach the patient," he said. "You need to keep an open mind to approach the patient for his history and approach the patient in order to assess him."

The doctor should address the patient by saying something like, "I'm going to ask your mom how we can talk together," the article suggests. After the doctor speaks to the caretaker, he should repeat that to the patient, using his name to reinforce their direct relationship.

The doctor also should establish how the patient communicates yes or no either by asking directly or by showing how he can do so.

"I think the biggest thing is when you communicate with the caregiver, also communicate with the patient," Dr. Venkat said. "Multistep questions don't work with the patient. You need to be very methodical with the patient. Ask, 'Does your head hurt?' not, 'Does your head and back hurt?'

"When you're doing invasive treatment, make your patient understand the tactile and smell-related [aspects]. ... Allow the patient to feel the cast material [before applying a cast for a broken bone, for example]."

The article also suggests modeling things like splints or bandages on the caregiver or a stuffed animal and covering the materials with drawings or stickers for children or adolescent patients.

The doctor also should demonstrate each step of the exam on the caregiver or the stuffed animal.

Completion of tasks in the physical exam and diagnostic evaluation should garner rewards such as stickers or books.

The taste of medications should be considered; Pediatric formulas might be used for adult patients.

Doctors should watch for repeated movements such as swaying, tics or repeated phrases. "These behaviors can be comforting if the patient is in an agitated state," the article says. "If the behavior becomes rapid and intense in its repetition, it can also be an indicator that the person is about to become overwhelmed and explosive." If that happens, the patient should not be forced to stay still.

If possible, the exam should be done in a quiet room where the lights can be dimmed and equipment can be moved out.

The caregivers' beliefs also must be kept in mind, Dr. Venkat said. They often give their charges alternate therapies such as dietary supplements and other treatments such as chiropractic, acupuncture and neurofeedback and that must be respected.

"The parents that I've met are very invested, much more so than the [other] parents that come into the emergency department," he said. "The parents feel very, very involved with their child's care and are much more willing to question standard medical care. ...

"It's not being difficult. It's being an advocate for their family members."

Nevertheless, some alternate dietary therapies can have adverse side effects, and doctors have to be on the lookout for them. Most common are constipation or other problems with the gastrointestinal tract, which are frequently caused by the patient eating only certain foods, Dr. Venkat said. More rarely, the use of gluten-free and casein-free diets can place the patient at risk for nutritional deficiencies such as for vitamins A, B12 and thiamine, the paper says.

"You need to be prepared, not to question, but to be aware of side effects," Dr. Venkat said. "You have to point them out when they're causing harm to the patient, without being knee-jerk ... [but by] being much more diplomatic."

The other authors of the paper, which will be printed in the journal itself in a few months, are Candace Roman Crist and Robert Farrell, both third-year emergency medicine residents at Allegheny General, and Edward Jauch and William Scott Russell of the Medical University of South Carolina in Charleston.

To report inappropriate comments, abuse and/or repeat offenders, please send an email to socialmedia@post-gazette.com and include a link to the article and a copy of the comment. Your report will be reviewed in a timely manner. Thank you.

View the original article here

Dads struggle with childs autism, embrace parenting - Atlanta Journal Constitution

By Helena Oliviero

The Atlanta Journal-Constitution

Scott Carroll always knew something was not quite right with his toddler son, Cody.

Scott Carroll retreated after his son, Cody, was diagnosed with autism. He struggled to connect with his child and mourned the loss of a relationship he didn’t think was possible. But Carroll has come to peace with his son’s diagnosis and he tries to live in the present.

Carroll has bonded with his 41/2-year-old son. One recent sunny afternoon, Carroll set up an inflatable water slide for Cody, and later the dad and son enjoyed some one-on-one time playing with trains.

On a recent afternoon, Cody said, “I want ice cream.” It wasn’t mumbling. It was Cody expressing exactly what he wanted, and it was a special moment for his dad.

A fitful sleeper, Cody slept with his head tilted backward. He fidgeted, clenched his fists, barely spoke.

Maybe it was acid reflux or fluid in the ears. It could be lots of things.

But for Carroll, there was one thing it couldn’t be — autism.

“I’d lay in bed and my heart just kept saying No. No. No,” Carroll said.

Even after the official diagnosis, Carroll cried and asked God if he were being punished.

“Would Cody ever graduate from high school? ... Would we ever ride four-wheelers together? ... Would Cody ever ride a bike?” Carroll asked himself over and over.

But over time, Carroll, 43, worked through his feelings and became more engaged. He started bringing Cody, a child with blue eyes and an easy smile, to speech and other therapies. And he discovered new ways to connect to his younger child.

It may not be a typical father-son relationship. It won’t be kindergarten at 5, T-ball at 6, teaching Cody to drive at 16.

But it’s a father-son relationship Carroll now embraces.

Carroll tries to live in the present — recently setting up an inflatable water slide on a sunny afternoon, followed by some one-on-one time playing with trains.

On this Father’s Day, Carroll looks at his now-4 1/2-year-old son hopefully.

“It was a process for me of learning to accept my son was going to have special needs and that, you know what, that it wasn’t all that bad,” said Carroll.

Raising a child with autism carries a unique set of challenges. Unlike some other illnesses, doctors can’t fix autism. There is no cure for autism, and there’s no “one-size-fits-all” treatment.

And while moms often tackle autism right away, reaching out to other women for support, fathers often suppress their feelings and try to handle it alone.

“What happens when you get a diagnosis is the mother typically starts like preparing for war — mobilizing resources. She’s on the Internet day and night looking for alternative therapies, and men are fixers by nature and all of a sudden they can’t fix it and their minds don’t know how to handle it,” said Jeff Davidson, founder of Rising Above Ministries, which holds retreats for parents with special-needs children in Tennessee and Georgia.

During a recent retreat, when moderators asked people to submit questions, one-third of the responses were from women saying the same thing: How do I get my husband more involved and engaged?

A handful of couples canceled because the husbands wouldn’t go to the retreat.

Davidson said some fathers leave after a diagnosis. Some check out, retreating into their job or hobby.

About 1 in 88 children are on the autism spectrum, according to the Centers for Disease Control and Prevention. That’s a 78 percent increase compared with a decade ago, according to a report released this year. Boys with autism continue to outnumber girls 5-to-1. It’s estimated 1 in 54 boys have autism.

Autism is a general term for a group of complex disorders of brain development. The disorders are characterized in varying levels of difficulties with social interaction, communication and repetitive behaviors.

The impairment ranges from mild to severe. Cody is somewhere in the middle.

Davidson learned firsthand the challenges of being a dad to a son with autism. His teenage son has autism and cerebral palsy. During the early years of his son’s life, Davidson worked in commercial insurance, and he’d escape to his home office every night. He’d make up reasons to catch up on work — and then disappear.

Davidson said dads must go through the grief process. It was gradual and included denial and anger and a stage of “bargaining” for Davidson, who lives in Cookeville, Tenn.

Eventually, he stopped focusing on what his child couldn’t do, but instead on what they could do together — even if that meant getting out of his comfort zone.

For example, Davidson, a former pastor, didn’t particularly like singing. But that changed because every time he sang a tune, his son, who can’t speak, lit up. Now, every night for an hour, Davidson swings his only child, Jon Alex, 14, on a special platform swing. And, of course, sings to his son at the same time.

“It’s our time together. ... If I had a typical child, I would never dream of doing this. But whose dream was that anyway? All I know is for an hour, my autistic son is happy and engaged and we are together.”

Davidson recommends fathers connect with other dads of special-needs kids. No need to call them “support groups,” he said. He calls his men’s groups “Hang Time” — a time for pizza, talking about kids and life, in a place of understanding.

“If you go into a Wal-Mart with a child in a wheelchair, there’s a certain level of grace and acceptance you receive. If you have a child with autism thrashing about, you get those stares and hear those comments, ‘That mom and dad should be doing something about that behavior.’”

Davidson encourages dads to do what they can; they don’t have to do everything.

“If I can convince a dad to stick it out just long enough and to hang in there and to fight for your child, you will burn through this and you will see this as a huge blessing and opportunity,” he said.

Carroll has done just that.

Working for the Department of Transportation, Carroll used a combination of sick and vacation days to accompany Cody to therapy two days a week. Cindy Carroll, who is a firefighter/paramedic, did the same to also accompany Cody to therapy.

Amber Valentino, a licensed psychologist and board-certified behavior analyst at the Marcus Autism Center in Atlanta, saw Carroll get excited about his son’s progress at the institute, where Cody got therapy to help with communication skills and making transitions.

“It’s wonderful to see parents get excited about a child’s progress, and it can be difficult because those gains can be very small. So it might be going from non-gesturing to gesturing, and on a daily basis it can seem very small, but over time children can make a lot of progress,” Valentino said.

Davidson’s last retreat in Tennessee near the Georgia border hosted about 50 couples, many from metro Atlanta.

The Carrolls were among the couples there. It was the first time the couple had ever been away from Cody.

Scott Carroll said the retreat taught him and his wife the need to support each other — especially when one sinks into a dark place.

“When she’s having a bad day, I’ve got to be there for her and vice versa,” Scott Carroll said. “I’ve got to lift her up. We can’t both get down at the same time.”

Life in the Carroll household is unpredictable. On some days, Cody is OK with getting dressed, brushing his teeth, going to therapy. Other days, he battles every task, every change. On a recent day, Cody fought getting medicine for 20 minutes. That was followed by a 20-minute battle to take a bath, and that was followed by yelling and screaming against the idea of getting his teeth brushed.

Cindy Carroll said she has watched Scott really understand their son. For example, her son likes to play with his trains on the kitchen table. He likes to put them in a specific order either by color or by design — the wooden ones next to the wooden ones; metal next to the metal ones. When the Carrolls picked up the trains before dinner, Cody got distraught.

“Scott is good at stepping back and looking at what’s causing the tantrum,” Cindy said. “Scott worked with Cody by preparing him before dinner and talking about moving the trains, and then he would do it slowly and carefully.”

She has seen her husband look for opportunities to help her son learn and grow — as well as just be happy.

Scott Carroll recently used bath crayons to write the ABCs on the wall while Cody took a bath. It was a little lesson on the alphabet, but it also made bath time — something Cody often resists — more enjoyable.

Afterward, Cody was making a sound “A-I-E-U.” Scott realized Cody was trying to sing “Old MacDonald,” so after the bath, father and son sang the nursery rhyme.

They celebrate moments. Cody, who was saying “milk” or “swim” to express himself, is now saying full sentences: “I want milk” and “I want to swim.”

They’ve lost some friends who seem uneasy around a child with autism. They’ve made some new friends.

The Carrolls also try to be sensitive to their older child, 10-year-old Justin, not wanting him to feel neglected because of the time and attention that goes to Cody. Carroll carves out time for Justin. The two go to the movies or go hunting. Carroll encourages his son’s enthusiasm in working on animation projects.

“Now I see it takes a special parent to be a special-needs parent. We didn’t do anything wrong. God has a plan for us and that is Cody. God thought we could handle Cody and that we would fight for Cody.”

On a recent afternoon, Cody said, “I want ice cream.” It wasn’t mumbling. It was Cody letting his parents know exactly what he wanted.

Carroll smiled.

And then Cody turned to his dad and kissed him on the forehead. He said, “I U” and turned his palm forward. He then extended his thumb, index finger and little finger, leaving the two fingers in the middle down. Cody was telling his father “I love you” in sign language.

Carroll hugged his son.

“I love you, too, Cody. I love you, too.”

View the original article here

Wednesday, 20 June 2012

Brain tissue used to study autism destroyed by hospital freezer fault - The Guardian

A spokeswoman for the Harvard Brain Tissue Resource Center said two investigations were under way to determine how the freezer failure occurred.

A freezer malfunction at a Harvard-affiliated hospital has damaged a third of the world's largest donated brain tissue for autism research.


A spokeswoman for Autism Speaks said it was too early to assess the impact of the loss, discovered last month at the McLean hospital in Belmont, Massachusetts, but one scientist predicted it could set research on the disorder back by as much as a decade.


In all, 93 donated brains were damaged at Harvard Brain Tissue Resource Center (HBTRC), 54 of them dedicated to autism research.


A spokeswoman for the center at McLean hospital, Adriana Bobinchock, said two investigations were under way to determine how the freezer failure happened. A third investigation was being carried out by Autism Speaks.
D Francine Benes, director of the Harvard Brain Tissue Resource Center, told the Boston Globe that the damaged brains were a "priceless collection."


While foul play was not being ruled out, Bobinchock said that it was unlikely because the collection was located in a locked room within a secure building accessible by one of two keys held by security staff and brain bank staff.


There is also 24-hour surveillance. Bobinchok said the inquiry would concentrate on what caused the failure of the freezer, as well as two alarm systems that should have been triggered by the rise in temperature. The freezer is normally checked twice a day by staff who study a digital readout on the outside of the freezer.


But when a staff member opened the freezer, they noticed that the temperature inside did not match the display, which normally read minus 79 centigrade. Two alarms, connected to separate circuits, had also failed to go off.


The malfunction was discovered on May 31 after three days of rising temperatures – too late to prevent thawing of the tissue. Tests are currently under way to determine if the DNA is intact and can be used for genetic research, but Bobinchock said it is "unclear whether the samples will be compatible with the full-range of the needs of neuroscientists".


Fifty-two of the brains related to autism research had been bisected, with one hemisphere placed in formalin and the other half put in the freezer. The formalin fixed hemispheres for these 52 cases remain available for research or have been assigned to specific research efforts such as the Brain Atlas project.


Carlos Pardo, a neuropathologist and associate professor of neurology at Johns Hopkins University, told the Boston Globe that the damage to the brains could slow autism research by a decade as the collection is restored.


It was Pardo's 2004 research on autism using brains in the bank that first linked the disorder to the immune system.


The collection "yields very, very important information that allows us to have a better understanding of what autism is, as well as the contribution of environmental and immune factors,'' Pardo told the Globe.


When asked whether Pardo's assessment was likely, a spokeswoman for Autism Speaks cited a statement by Geri Dawson, the chief scientific officer. It read: "Autism Speaks is conducting due diligence regarding this incident and is preparing an independent assessment of the viability of the affected specimens for continued research purposes. It's too soon to assess research implications."


In an open letter, Dawson said many of the damaged samples had already been used in medical trials. She said: "Although this event will affect the availability of tissue for future research, we cannot yet determine the level of impact, but we are confident that we can maintain the momentum of scientific studies based on brain tissue."


Dawson said that the failure in the freezer and alarm systems had never happened in the 35-year history of the HBTRC.


She paid tribute to the families who had donated the brain tissue and said that they have been contacting them. "We want to ensure that this unfortunate and rare incident will not negatively affect donations in the future. We remain committed as ever to conducting research that will uncover the causes of autism and allow us to develop more effective treatments. Brain tissue research is crucial to achieving those goals."


The freezer may have held 149 brain samples – only 53 of them were from Autism Speaks which were donated from people who had died with autism or a related disorder but some of them from family members of those with autism, according to Autism Speaks.


The brain bank research has supported 125 projects and has resulted in 118 publications in peer-reviewed journals.


View the original article here

Tuesday, 19 June 2012

Tommy Hilfiger reveals both his teenage daughter and teen stepson have autism - Daily Mail

By Daily Mail Reporter


Tommy Hilfiger has revealed that both his teenage daughter and stepson are affected by autism.


In the past, the designer has used his fame to raise awareness for autism.


The fashion designer appeared in a Public Service Announcement in November, 2011, for  philanthropy Autism Speaks to honor his 16-year-old daughter, Kathleen.


Awareness: The fashion designer appeared in a PSA in November, 2011, for philanthropy Autism Speaks to honor his 16-year-old daughter, Kathleen



Hilfiger, 61, was told his daughter was 'developmentally delayed' when she was five-years-old.


After seeing specialists at Harvard and Yale they eventually discovered she was 'on the spectrum of autism'.


He has since strongly campaigned for the disorder, to raise awareness for it and funds.


He said he is proud of his 'really smart' daughter who now attends a special school.


'She’ll come and wake me up in the middle of the night and ask, "Am I intelligent?" or "Someone in school told me I was a retard, is that true?" It’s just heart-wrenching and I wish more people cared about it.


'The government is not involved in it. People aren’t donating enough money. There’s not enough research,' he said.


'There’s no cure. It needs help, so we’ve become involved.'


He said that having a stepchild with similar problems has proved to be a comfort for his daughter. He married Dee in December 2008.


Odds: Of finding someone to invest in his vision of achieving a dream in fashion, one in 23 million. Of having a child diagnosed with autism? One in 110



'Dee has a son my daughter’s age who had the same issue,' he said. 'That really brought us together.'


Autism is a developmental disorder that appears in the first three years of life, and affects the brain's normal development of social and communication skills.


It is a physical condition linked to abnormal biology and chemistry in the brain. The exact causes of these abnormalities remain unknown, but this is a very active area of research.


There are probably a combination of factors that lead to autism.


Genetic factors seem to be important. For example, identical twins are much more likely than fraternal twins or siblings to both have autism.


Similarly, language abnormalities are more common in relatives of autistic children. 


It affects boys three to four times more than it does girls. It is believed it now affects one in every 88 American children.
 


               Source: http://www.ncbi.nlm.nih.gov


The short video briefly chronicles Hilfiger's rise as a small-town boy in Elmira with big dreams to becoming one of the most recognizable brands in the world.


He documents the odds of different parts of his life actually happening -  opening his clothing store at the age of 18, a chance of one in 138,000.


Odds of finding someone to invest in his vision of achieving a dream in fashion, one in 23 million.

At the end he appears with a child and says: 'Odds of having a child diagnosed with autism? One in 110.'


Autism Speaks has been around since 2005 and it raises millions of dollars, with a lot of it from local fund raising by trusting parents. 


Autism Speaks is America’s largest autism science and advocacy organization.


They are dedicated to funding research into the causes, prevention, treatments and a cure for autism, increasing awareness of autism spectrum disorders, and advocating for the needs of individuals with autism and their families.


The PSAs are designed to help raise awareness about autism and to encourage the public to learn the early warning signs of a disorder that now affects one in every 88 American children.



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Monday, 18 June 2012

Kids With Autism Face Health Care Disparities, Study Finds - YAHOO!

Although children with autism spectrum disorders need more health care services, they have less access to specialized care than children with other conditions, such as asthma or diabetes, according to a new study.


The services used by children with autism are also more costly, the researchers from the University of Missouri-Columbia revealed in the report published in the July-September issue of Research in Autism Spectrum Disorders.


"Across the board, children with autism spectrum disorders used more health care services, including in-patient stays in the hospital, and required more medications," study co-author Nancy Cheak-Zamora, assistant professor of health sciences in the university's School of Health Professions, said in a university news release.


"Children's insurance companies paid more for services, and parents also paid more, with their out-of-pocket costs often exceeding a thousand dollars per year," she added.


Autism spectrum disorder is the umbrella term for a group of developmental disorders with similar features, ranging from Asperger's syndrome at the mild end to full-blown autism. In general, it is a complex disability that causes problems with social interaction and communication, and is often marked by obsessive and repetitive behaviors.


For their investigation, the researchers examined previous studies that calculated the total health care costs paid by the families of children with autism spectrum disorders. In analyzing the information, they found that children with autism, who are at risk for other conditions, such as seizures, sleep disturbances and gastrointestinal problems, paid more for the care they received than other kids with illnesses that required specialized care.


"Children with autism spectrum disorders need coordinated health care, better access to services and more affordable care," said Cheak-Zamora. "Insurance companies should develop policies that will cover the treatments children with autism spectrum disorders need."


The study authors concluded that children with autism spectrum disorders should have a "medical home," which is the term for coordinated team care led by a primary care physician.


"In general, having a medical home helps ensure you have quality health care. It examines how well your health care providers are giving you coordinated care in which the family is truly a partner," explained Cheak-Zamora. "We found that children with autism spectrum disorders have medical homes less often than children with other special health care needs. This is a problem because families without a medical home report experiencing more financial problems and difficulties accessing and utilizing needed medical services."


More information


The U.S. National Library of Medicine has more about health disparities.


View the original article here

Sunday, 17 June 2012

Happy Fathers Day to the autism dads - Washington Times

SILVER SPRING, Md., June 18, 2011 — I write a lot here about autism moms, mostly because I am one, so that is what I know.  There are a lot of mothers who are very vocal about their children and a lot of mothers who act as the primary caregivers for their children with autism. That said, there are many fathers out there who take an active (or primary) role with their autistic children and who give their everything to their kids. Happy Father's Day

To these dads, I wish you a happy Father's Day, and say thank you.

Thank you for seeing your children differently than do your female counterparts. This additional perspective teaches moms so much and is so good for our kids.

Thank you for intuitively getting it. I hear over and over that many dads (not all, mind you) don't do the in-depth research and reading about autism that many moms do, but that you still manage to understand, love and truly get your autistic kids.

If you are the primary earner in your family, thank you for working so hard to make your family financially viable. This is a huge burden; thank you for shouldering it. If you stay at home with your child, thank you for being willing to go against societal norms to do what your family needs.

If you work, thank you for coming home after a long, hard day and understanding that your family needs from you just as much or more than your job does. Thank you for coming home and jumping directly into your second job—taking care of and loving your family.

Thank you for being able to handle your children, either at home or out in the world, so that we autism moms can have a break and manage to get some time for ourselves.

Thank you for disagreeing with your partners on occasion. We may be angry when you do, but often we need to hear what you have to say.

Thank you for taking time off from your job to attend IEP meetings, doctors appointments and other important meetings. Whether you lead or take on more of a support role, your presence is important and valued.

Thank you for being strong for your children and understanding that when your partner cries it is not because she is weak, broken or doesn't love her child, but instead knowing that she sometimes has to take a moment to grieve. Thank you for understanding how hard it is.

Thank you for being able to cry too.

Thank you for knowing that it can be so very hard to raise a child with autism and his siblings and for understanding what is important—not always that the house is clean or that dinner is on the table, but that your children are loved, valued and cared for.

Thank you for accepting that while your friends and their sons may do activities that you wish your son could do, you may have to help him participate in alternative activities. Thank you for being okay with that.

Thank you for fighting so very hard to give your children the life that they need.

Thank you for loving your partners and for loving your children with your whole heart. Thank you for accepting that the family you envisioned is maybe not the one that you have, but for embracing it nonetheless.

Please understand when I write these words that I know there are so many kinds of families (single dads, two dads, grandparents, single moms, married couples, and all kinds of different work situations) and I know that I am writing from one main perspective here. I do so because it is what I know. If your situation is different, please take these thanks in the spirit in which I give them: with the utmost of respect and in the hope of understanding.

Thank you, and happy Father's Day.

Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean's work at Autism Unexpected in the Communities at the Washington Times. She would like to thank her husband for all of the things above and so much more.

This article is the copyrighted property of the writer and Communities @ WashingtonTimes.com. Written permission must be obtained before reprint in online or print media. REPRINTING TWTC CONTENT WITHOUT PERMISSION AND/OR PAYMENT IS THEFT AND PUNISHABLE BY LAW.

When Jean had her first child in 2001, "autism" was about the scariest word she could think of. Six years later when her second child was diagnosed with PDD-NOS, a form of autism, she was just happy to have a word to help him get the services he needed. Her autism journey has been full of tears, laughter, love and at least one attorney.

Jean blogs about her life with her autistic son, Jack, on her blog, Stimeyland. Her two neurotypical children, Sam and Quinn (one older, one younger than Jack), make frequent appearances there as well. Also at Stimeyland? Jean's quirky sense of humor.

She also runs AutMont, an events calendar listing autism-related events in Montgomery County, Maryland.

Raising a child with special needs is hard for so many reasons, but after living with Jack, Jean wouldn't trade him for anything in the world. Come along with Jean as she experiences the joys that come with parenting a special kid.

You can email Jean anytime at stimeyland at gmail dot com or follow her on Twitter, where, as "Stimey," she offers her world view in snippets of 140 characters or less.

Contact Jean Winegardner

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