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Monthly Archives : February, 2010

Autism And The Placebo Diet

The Autism News | English


Photo by foltzwerk available under a Creative Commons License

Studies show that a gluten-free casein-free diet has no discernable effect on autism. So why are many parents continuing with the treatment?

By Nathan Ackroyd | Assistant Professor of Chemistry, Mount Royal University | The Mark

Months of concern had brought us to this doctor’s office, where my two-year-old was scrambling into corners and under tables, looking for the source of his distraction, his frustration. “What is that?” he asked again and again. It wasn’t until he at last asked, “What is that sound?” that I was finally able to satisfy him – the faint hum of the fluorescent lighting was driving him crazy.

We learned that Evan has Sensory Integration Dysfunction, a condition often associated with either autism or giftedness. For someone like Evan, everyday sensation such as touch, taste, or sound is not perceived in the normal way. Sounds that most of us tune out continue to force their way into Evan’s attention. Every one of his senses appears to be over- or under-sensitive, and trying to correct the imbalance sometimes leads to behaviour problems. Searching for a treatment more effective than earplugs his ears are too sensitive for led us to a possible solution – the gluten-free, casein-free diet. This diet has been in the news recently as a potential treatment for autism after a January 2010 review in the journal Pediatrics re-affirmed that it doesn’t work. Gluten, a protein found in various grains, and casein, a milk protein, are harmless for most people. So why would anyone think that the proteins in white bread and a glass of milk contribute to autism? In 2003, Ann-Mari Knivsberg and Karl L. Reichelt tested several fragments of gluten and casein that can be found in the urine of autistic children at much higher levels than with normal children. When they injected specific fragments of partially digested protein into rats, the rats showed specific autism-like symptoms. Believers in the so-called Neuropeptide Hypothesis claim this finding demonstrates that it is these partially digested remains of bread and milk in the brain that cause the sensory-related characteristics of autism and sensory integration dysfunction. Remove them from the diet, and autism should go away. This hypothesis makes sense because our brains are filled with large proteins called receptors – docking stations for the chemicals our bodies use to send signals back-and-forth. Many drugs work because they bind to receptors to either block or strengthen the messages our bodies are trying to send. Researchers have found that these gluten and casein protein fragments bind to opioid receptors, the same receptors that dock morphine and heroin. These drugs cause an intense disconnection from the world. Since autism is characterized by poor response to the outside world, the connection between opioid receptors and symptoms of autism seems reasonable, though we lack the firm evidence that would prove the Neuropeptide Hypothesis.

Knivsberg and Reichelt conducted their rat study to explain the results of a 2002 study, in which they tracked the progress of ten autistic children who were on a gluten-free, casein-free diet. Compared to a control group, the kids on the new diet were reported by parents to have a marked increase in test scores related to symptoms of autism, such as aloofness, repetitive behaviour, and need for routine. But because the parents knew which diet their children received, skeptics can object that the observed improvement was due to a parental placebo effect rather than an actual change in their children.

A placebo is any treatment, be it medication, diet change, or counseling, that works because the patient expects that it will, rather than because of any effectiveness of the procedure itself. In the case of children on an altered diet, however, it is the parents who believe it will be effective. Because the children are unaware of the potential benefits, any placebo effect must be purely due to perception. The parents see a change because they are looking for one, a change that someone who is less hopeful would not see.

Jennifer Elder, a researcher at the University of Florida, improved on the Knivsberg study in 2006, this time keeping parents unaware of their children’s diet. Fifteen autistic children took turns in six-week shifts, eating either a regular diet or one that was gluten-free and casein-free. Improvements in the children’s symptoms were judged by external evaluators, using standardized tests. When asked to guess, 85 per cent of parents thought they could tell when the diet changed, though they were correct only at the same rate as random chance. The measured changes in the severity of symptoms showed no significant difference between the weeks on the control diet and the weeks on the test diet, demonstrating that the new diet has no value on its own as a treatment for autism. In spite of this, several parents reported seeing behavioural changes that weren’t supported by standardized test results and 70 per cent of the parents who finished the study planned to continue the diet. This despite of the potential health risks of a restrictive diet and firm evidence the diet had made *no* difference to their child.

Evan’s sensory integration is only part of what influences his behaviour. He is complex and has required a complex response from us. As he has grown, so has his ability to say what bothers him. Evan can tell us what is too loud, too scratchy, too much. He says gluten gives him headaches, and I believe him – partly because gluten gives me headaches too. A headache makes everything feel worse, whether diet has actual direct effects on sensory perception or not.

Studies aside, my own experience with the diet suggests that, other than a headache, our sensory perception of the world doesn’t change with what we eat. It appears that any observed change this particular diet has on autistic children is due to their parent’s perception of them, not the child’s perception of the world. Even so, the majority of the parents in the Elder study chose to continue a diet that science has shown to have no effect. It appears that when the choice is between hope and science, many find that hope in a placebo is the more attractive option.

Source: http://www.themarknews.com/articles/980-autism-and-the-placebo-diet

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Study: The prevalence of obesity in children with autism.

The Autism News | English

The prevalence of obesity in children with autism: a secondary data analysis using nationally representative data from the National Survey of Children’s Health

By BMC Pediatrics

Abstract (provisional)

Background

The prevalence of childhood obesity has increased dramatically in the last two decades and numerous efforts to understand, intervene on, and prevent this significant threat to children’s health are underway for many segments of the pediatric population. Understanding the prevalence of obesity in populations of children with developmental disorders is an important undertaking, as the factors that give rise to obesity may not be the same as for typically developing children, and because prevention and treatment efforts may need to be tailored to meet their needs and the needs of their families. The goal of the current study was to estimate the prevalence of obesity in children and adolescents with autism.

Methods

This study was a secondary data analysis of cross-sectional nationally representative data collected by telephone interview of parents/guardians on 85,272 children ages 3-17 from the 2003-2004 National Survey of Children’s Health (NSCH). Autism was determined by response to the question, “Has a doctor or health professional ever told you that your child has autism?” Children and adolescents were classified as obese according to CDC guidelines for body mass index (BMI) for age and sex.

Results

The prevalence of obesity in children with autism was 30.4% compared to 23.6% of children without autism (p=.075). The unadjusted odds of obesity in children with autism was 1.42 (95% confidence interval (CI): 1.00, 2.02, p=.052) compared to children without autism.

Conclusions

Based on US nationally representative data, children with autism have a prevalence of obesity at least as high as children overall. These findings suggest that additional research is warranted to understand better the factors that influence the development of obesity in this population of children.

The complete article is available as a provisional PDF.

Source: http://www.biomedcentral.com/1471-2431/10/11/abstract

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Parents explore diet and autism

The Autism News | English

By KIM MORGAN | Houston Chronicle

“Very nasty, very foul odor and full of undigested food particles,” said Houston resident Michelle Groogan of her then 18-month-old son’s bowel movement. “It was the classic autism poop.”

Garrett was diagnosed with autism when he was 2, and Michelle Groogan began researching ways to ease her son’s digestive issues, which she felt were autism-related. It wasn’t long before she came across the Gluten Free Casein Free, or GFCF, diet.

Gluten is a protein found in wheat, rye, barley and oats. Casein is the protein in cow’s milk, as well as all mammalian milk.

“It was very overwhelming,” Groogan said. “I mean, everything has gluten and dairy in it.”

Groogan said health food stores and grocery stores such as Whole Foods make it easier to find GFCF foods, but it comes with sticker shock. She spends about $75 a week on Garrett’s food, the same amount she spends for food for the rest of the family.

“We had nothing to lose by trying it,” Groogan said. “Within a few months we started seeing normal stools. When his digestive system was feeling better, we noticed he picked up more language.”

Garrett, now 6, has been on the diet for more than three years.

“It certainly hasn’t healed him completely,” Groogan said, “But we’re not ready to stop the diet any time soon.”

Katherine Loveland, professor of psychiatry and behavioral sciences and director of the Center for Human Development Research at The University of Texas Medical School at Houston, said the American Academy of Pediatrics released a statement recently that said it’s possible that kids with autism have some problems that are related to gastric disturbances, but they do not see evidence that this is a cause of autism.

“That does not mean it might not be important,” Loveland said. “The percentage of kids with autism that has gastrointestinal difficulties can be 10 percent or 70 percent depending whom you study and how you study them. So it’s not clear how many of them have it, or how many are relieved of it through diet.”

Anecdotally, for some, the proof is in the pudding.

“The observer is biased,” Loveland said. “That’s one possibility. Or it could be that the child did have some gastric distress, pain they were not able to report, and the child is now more comfortable day to day, and therefore feeling better, so behaving better. To put it simply, it’s complicated.”

Sugar Land resident Scott Jackson said he heard about the diet after his son Tyler was diagnosed with autism when he was 2.

“It seemed to be the first question people asked when they found out about Tyler’s diagnosis,” Jackson said. “We decided to give it a try because just like every family desperately looking for ways to help their child, we will try most things that can help, with or without proof.”

Tyler, now 5, spent about 10 weeks on the diet without any noticeable improvement, Jackson said.

Dr. Robert Sears, who will release The Autism Book in April, said any parent starting their child on the diet should give it a good six months, but children age 7 and older need at least a year.

Food allergies, Sears said, are the single most common medical problem shared by children with autism.

He devotes an entire chapter of the book to diet changes, in which he writes about the GFCF diet. He said one survey of 1,800 autistic children revealed 65 percent showed improvement on the diet.

He said chronic diarrhea resolves, first words emerge, hyperactivity diminishes, and potty training becomes easier.

Sears said the diet works best in conjunction with supplements, including digestive enzymes, probiotics, cod liver oil, vitamins and minerals.

Sears relates the stories of five families from his own practice who have had some success with biomedical treatments, including dietary changes and the addition of vitamins and minerals.

The children Sears talks about include those with classic regressive autism, which means kids who are “completely normal” the first year or two, and then go backwards developmentally, sometimes suddenly and dramatically.

Sears drives homes the point by saying early intervention “can change a life.” He also says he has had cases of children who don’t fit the classic story of regressive autism with gastrointestinal symptoms, but who still benefit from the GFCF diet.

One such patient didn’t have constipation or diarrhea and didn’t regress socially or developmentally, but was quite developmentally delayed. The child was diagnosed with autism, and Sears said he showed improvement after going on the GFCF diet, and adding vitamin B12 and zinc.

Sears wraps up his book with a chapter titled “Prevention for Your Future Children.”

“I know it’s controversial to talk about prevention of autism when we don’t actually know what the cause is,” Sears said. “Where I’m coming from is that a lot of similar medical problems seem to occur in kids with autism, and that when we fix those medical problems, the symptoms of the autism tend to get better. One of the main ones is food allergies. Identify food allergies early by taking colicky babies and chronic, loose stools seriously.”

“Very nasty, very foul odor and full of undigested food particles,” said Houston resident Michelle Groogan of her then 18-month-old son’s bowel movement. “It was the classic autism poop.”

Garrett was diagnosed with autism when he was 2, and Michelle Groogan began researching ways to ease her son’s digestive issues, which she felt were autism-related. It wasn’t long before she came across the Gluten Free Casein Free, or GFCF, diet.

Gluten is a protein found in wheat, rye, barley and oats. Casein is the protein in cow’s milk, as well as all mammalian milk.

“It was very overwhelming,” Groogan said. “I mean, everything has gluten and dairy in it.”

Groogan said health food stores and grocery stores such as Whole Foods make it easier to find GFCF foods, but it comes with sticker shock. She spends about $75 a week on Garrett’s food, the same amount she spends for food for the rest of the family.

“We had nothing to lose by trying it,” Groogan said. “Within a few months we started seeing normal stools. When his digestive system was feeling better, we noticed he picked up more language.”

Garrett, now 6, has been on the diet for more than three years.

“It certainly hasn’t healed him completely,” Groogan said, “But we’re not ready to stop the diet any time soon.”

Katherine Loveland, professor of psychiatry and behavioral sciences and director of the Center for Human Development Research at The University of Texas Medical School at Houston, said the American Academy of Pediatrics released a statement recently that said it’s possible that kids with autism have some problems that are related to gastric disturbances, but they do not see evidence that this is a cause of autism.

“That does not mean it might not be important,” Loveland said. “The percentage of kids with autism that has gastrointestinal difficulties can be 10 percent or 70 percent depending whom you study and how you study them. So it’s not clear how many of them have it, or how many are relieved of it through diet.”

Anecdotally, for some, the proof is in the pudding.

“The observer is biased,” Loveland said. “That’s one possibility. Or it could be that the child did have some gastric distress, pain they were not able to report, and the child is now more comfortable day to day, and therefore feeling better, so behaving better. To put it simply, it’s complicated.”

Sugar Land resident Scott Jackson said he heard about the diet after his son Tyler was diagnosed with autism when he was 2.

“It seemed to be the first question people asked when they found out about Tyler’s diagnosis,” Jackson said. “We decided to give it a try because just like every family desperately looking for ways to help their child, we will try most things that can help, with or without proof.”

Tyler, now 5, spent about 10 weeks on the diet without any noticeable improvement, Jackson said.

Dr. Robert Sears, who will release The Autism Book in April, said any parent starting their child on the diet should give it a good six months, but children age 7 and older need at least a year.

Food allergies, Sears said, are the single most common medical problem shared by children with autism.

He devotes an entire chapter of the book to diet changes, in which he writes about the GFCF diet. He said one survey of 1,800 autistic children revealed 65 percent showed improvement on the diet.

He said chronic diarrhea resolves, first words emerge, hyperactivity diminishes, and potty training becomes easier.

Sears said the diet works best in conjunction with supplements, including digestive enzymes, probiotics, cod liver oil, vitamins and minerals.

Sears relates the stories of five families from his own practice who have had some success with biomedical treatments, including dietary changes and the addition of vitamins and minerals.

The children Sears talks about include those with classic regressive autism, which means kids who are “completely normal” the first year or two, and then go backwards developmentally, sometimes suddenly and dramatically.

Sears drives homes the point by saying early intervention “can change a life.” He also says he has had cases of children who don’t fit the classic story of regressive autism with gastrointestinal symptoms, but who still benefit from the GFCF diet.

One such patient didn’t have constipation or diarrhea and didn’t regress socially or developmentally, but was quite developmentally delayed. The child was diagnosed with autism, and Sears said he showed improvement after going on the GFCF diet, and adding vitamin B12 and zinc.

Sears wraps up his book with a chapter titled “Prevention for Your Future Children.”

“I know it’s controversial to talk about prevention of autism when we don’t actually know what the cause is,” Sears said. “Where I’m coming from is that a lot of similar medical problems seem to occur in kids with autism, and that when we fix those medical problems, the symptoms of the autism tend to get better. One of the main ones is food allergies. Identify food allergies early by taking colicky babies and chronic, loose stools seriously.”

PREVENTION TIPS

Autism prevention? Dr. Robert Sears believes it’s possible.

For moms-to-be:

o Avoid vitamin D deficiency before, during and after pregnancy (if breast feeding).

o Avoid mercury. Moms-to-be should have metal fillings replaced at least three months prior to getting pregnant. Request mercury-free flu shots.

For infants:

o Limit antibiotics.

o Use ibuprofen (Motrin or Advil) instead of acetaminophen (Tylenol).

o Ask for a vaccine schedule which gives no more than two shots at a time.

For infants who have autistic older siblings:

o Go GFCF from the start, including mom while she is pregnant and breastfeeding.

o Delay vaccines until your child is 3 years old; regressive autism is almost unheard of.

GFCF DIET TIPS

o o o Go casein free first, because it usually involves only a few changes to the diet.

o o o Don’t go cold turkey. Instead take a couple of weeks at a time to ease into changes of your child’s diet.

o o o Determine how strict you need to be. Some kids can tolerate the occasional infraction.

o Don’t go it alone. Find someone who can mentor you along.

Ref: The Autism Book, by Dr. Robert Sears

Source: http://www.seattlepi.com/health/415743_autism22.html

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The Autism News English, English autism, autistic, Diet, GFCF diet, Gluten Free Casein Free

Why autism is different for girls

The Autism News | English


Girl talk: Nicky Clark, above right, with Emily, left, who has autism and Lizzy, who has Asperger’s
(Photo by Andrew Fox)

We may think it only affects boys. But the female variant is often much harder to spot – and that means thousands of girls may be going undiagnosed. Jeremy Laurance reports

By The Independent

With hindsight, Nicky Clark says early signs of autism were present in both her children. The elder one, though very bright, had a love of routine and was not interested in fantasy games like other children. The younger one liked to line things up in rows and would watch the same video clip over and over again for hours. When she got the diagnosis it came as a huge shock, as it would be for any parent. But there was an additional reason why it was unexpected – both her children are girls.

Autism is an overwhelmingly male diagnosis – it has been described as the “extreme male brain”. Boys with the diagnosis outnumber girls by between 10 and 15 to one. The typical high functioning male, if he is lucky, finds a secure post in a university where he can use his exceptional powers for academic study, shunning most social contact as the “eccentric professor”, and relaxing at home with his train set in the attic.

But in the developing story of autism – interest in which has increased hugely in the last decade – girls have been neglected. That omission will be remedied this week with the first conference on autistic spectrum disorders in women and girls. One aim will be to examine whether the condition has been underdiagnosed in females – and what links there may be with eating disorders.

According to Janet Treasure, professor of psychiatry at the Institute of Psychiatry, King’s College, London, around a fifth of girls diagnosed with anorexia have autistic spectrum features and 20 to 30 per cent may have exhibited rigidity and perfectionism in childhood. Anorexia has been called the female Asperger’s (the mild version of autism).

Professor Treasure says: “When I was training at the Maudsley 30 years ago, anorexic girls were treated as little more than malfunctioning machines. The view was that it was an illness that mainly affected middle-class intelligent white girls and was little more than an awkward phase of adolescence. Today there has been a huge change in the understanding of the disease. People with eating disorders find it difficult to change self-set rules and learnt behaviour once fixed in the brain. They also see the world in close up as if looking through a zoom lens, and get lost in the detail. There is a strong similarity to autistic spectrums.”

She will tell the conference that there are two aspects to the link. First, people with autistic spectrum disorder are more at risk of getting anorexia. “If girls are obsessed with systems and rules then the rules governing eating become very attractive. They grab them very much.”

Second, being undernourished and underweight as a result of an eating disorder exaggerates any autistic traits. The effect of starvation on brain function impairs set-shifting – the ability to think flexibly and to multi-task instead of focusing on one thing – and the ability to read other people’s minds. “They become more socially isolated, withdraw more and more into their own world and become cut off and lonely,” she says.

The task for therapy is to bring them out of their obsession with eating, or avoiding it. But they have to make “big choices that require a lot of courage”. The autistic features are reversible in the majority of sufferers once they regain full weight but it requires “a leap so they stop listening to their eating disorder voices”.

Girls whose autistic traits predated their anorexia face a harder task, even supposing they conquer the eating disorder. “For those with high functioning Asperger’s they can work out what they have to do – to remember to smile, to ask, ‘How are you?’ They need to work at it because autistic traits make them uncharming and can cause heartache throughout life. If they remember the social rules it makes them a bit more charming,” Professor Treasure says.

Nicky Clark’s daughters do not have eating disorders but, like all those with autistic traits, they struggle with the complex rules that oil the wheels of social intercourse. The eldest, Lizzy, 15, is bright, able and verbally confident. She was progressing well at school until the age of 10, when she was ostracised by her peer group and bullied.

Nicky says: “I had always known she had to have a routine. She never really played with dollies or liked imaginative games like other girls. She asked very complicated questions, constantly seeking and clarifying her perception of the world. I had to be very careful with expressions like “he will bite your head off” because she would understand it literally and be frightened.”

“She was my first child and I assumed all children were like this. But it became more apparent when she was 10 that there were differences. She moved to secondary school but the bullying became much worse and she started self-harming – biting the backs of her hands till they were raw because of her frustration. Things really spiralled down.”

It took 18 months for her to be diagnosed with Asperger’s Syndrome – “we really had to fight for a diagnosis,” says Nicky – and by that time she had developed head nodding and a mild version of Tourette’s syndrome.

Eventually Nicky and her husband Phil, who come from Shrewsbury, moved Lizzy to an independent school, with small classes where she has since thrived. In 2008 she appeared in the award-winning BBC film Dustbin Baby, playing Poppy, a character with Asperger’s.

Nicky says: “She has a small group of friends; they realise her take on things is different and they back off. That is all it takes. She has the maturity to say, ‘This is the way I like to do things. I am who I am and you do things differently from me.’”

Emily, aged 12, was diagnosed as a toddler – long before Lizzy – with autism and learning disabilities. Nicky says: “She wasn’t speaking and my mum, who was a health visitor, said I should take her to the GP who referred her to the child development centre. She was diagnosed the day before her third birthday. I didn’t see it coming and all I could think of was Rain Man, the movie with Dustin Hoffman. Nothing the doctors were saying to me was going in. I left the consulting room and collapsed.

“Emily was terrifically affectionate and interested in things but had no language – that was the only symptom. She went to mainstream school and gradually her language started to come through. But around the age of five her friends started to drift away.”

They moved her to a special school where things improved. “She is still affectionate but she has grown and matured. Puberty has set in – she is becoming a teenager and there is a natural withdrawal. As long as she has her Teletubbies and Thomas the Tank Engine DVDs she is happy. But there is the huge challenge of her learning disabilities, which can lead to temper tantrums and what I call serious meltdown.”

Visitors to the Clark household are often surprised when they learn the girls are on the autistic spectrum. “People say, ‘Isn’t that a boy thing?’ or want to know if she can draw Westminster Abbey. Someone once said they couldn’t have autism because it only affected boys.”

Ignorance about the condition in the female sex extends to professionals, adding to the distress it causes. Research suggests that even when girls are screened autistic traits are not picked up. In one study of 60 patients at a psychiatric hospital in England, none were diagnosed as autistic but 11 were later shown to have autistic traits. They were diagnosed with other conditions such as personality disorder and schizophrenia.

Charities say a growing number of adult women are coming to them, having recognised themselves in autistic characters on television or in print. Often they are relieved to discover why they are “different”. The explanation for their delayed diagnosis, in addition to medical ignorance, is that girls tend to be better at masking the condition. They are better with language, more advanced than boys, less disruptive and better able to compensate for their problems.

Judith Gould, psychologist and director of the Lorna Wing Centre of the National Autistic Society, says: “We are definitely seeing an increase in women and girls being diagnosed. Girls are diagnosed later than boys at age 12 upwards. It is when they hit puberty that it becomes more obvious. Often they are on the periphery of social groups. They have learnt their social skills by intellect, not naturally or instinctively. Teenage girls are very socially demanding on each other and can be marginalised, teased and bullied. Often girls do not show difficult or aggressive behaviour but are shy or passive and depressed.”

It is to combat the ignorance and neglect of the condition among girls and women that this week’s conference is being held. Mark Lever, chief executive of the National Autistic Society, says: “So many women tell us that trying to get a diagnosis feels like an insurmountable hurdle and they have to fight tremendous battles to get the help support and services they desperately need. Autism is a lifelong condition. Without the right support it can have a profound effect on individuals and families.”

Source: http://www.independent.co.uk/life-style/health-and-families/features/why-autism-is-different-for-girls-1907315.html

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Google SketchUp lets children with autism create

The Autism News | English


A spaceship created with SketchUp.

By Ben Fulton | The Salt Lake Tribune

Ever since its 2000 debut by two Colorado software designers, SketchUp has been known as a cutting-edge 3D modeling computer program for architects. By pushing a cursor around downloadable objects, designers created two-dimensional scenes that could later be rendered three-dimensional with editing tools.

Today those same innovations are being tested at the University of Utah’s department of Family and Consumer Studies to expand the skills of children with autism spectrum disorders, thanks to a partnership with Google and Universal Creative Studios,

U. Department chair Cheryl Wright said she was cautious of initial claims that autistic children took to the software. By the end of a workshop earlier this month, she was sold.

“One boy walked in and said, ‘I don’t want to draw!’” Wright said. “But by the end, he had all these ideas of what he wanted to create.”

On hand for the Utah workshop were Chris Cronin, original Google SketchUp designer, and Steve Michael Gross, Universal Creative designer.

The designers had long heard that the software held autistic children rapt for hours. So they connected with the local autism community in Boulder, Colo., and started hearing about how 3D software might appeal to autistic kids.

The U. is receiving feedback from parents following the Feb. 6 workshop, Wright said, and hopes to conduct research on what Cronin and Gross call “Project Spectrum.”

In addition to Google SketchUp’s creative possibilities, the program might be used to help autistic children more socially adept. For example, children could draw mock-up scenarios of environments that make them uneasy, such as a dentist’s office.

“Parents really like the fact that this is a free service from Google,” Wright said. “There are a lot of people trying to sell things to parents of autistic children, usually at a very high cost.”

Source: http://www.sltrib.com/technology/ci_14449174

Other Free Solutions for Autism : Zac Browser and Tweens Browser

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