They say a massive imbalance in the number of autism diagnoses between the sexes could be attributed to more subtle symptoms in females that are either dismissed by clinicians, or undetected by current testing, which focuses on signs associated with male behaviour.
The challenge in diagnosing girls with autism is a focus of Dr Ernsperger, who is speaking at a conference in Melbourne.
She believes the diagnostic questionnaires doctors use for autism focus mainly on the male characteristics of the disorder and are yet to be adapted for girls ::::
American psychologist Dr Lori Ernsperger, who specialises in working with girls with autism, believes the high ratio of boys to girls diagnosed with the condition suggests a flaw in current diagnostic questionnaires.
“In some children and individuals that are severely impacted with autism, the ratio of males to females is about four to one,” Dr Ernsperger said. “When we move on that spectrum to individuals that are mildly affected by the disorder – often referred to as Asperger’s syndrome or high functioning autism – the ratio of boys to girls gets to 10 to one.”
Claims Clinicians Are Overlooking Subtle Indicators in Girls
By all appearances Sienna Quarmby is a normal and talented 10-year-old, but when she was small her mother noticed Sienna would have extreme reactions to small things.
“We all kind of … just assumed she was quirky,” Danielle Quarmby said. “When she was in prep … the prep teacher said that after observing Sienna for the first term … she thought that it would benefit Sienna to be assessed.”
Sienna was eventually diagnosed as having Asperger’s syndrome. Her two younger brothers also have different forms of autism.
Psychologist Danuta Bulhak-Paterson says in initial testing, health professionals are often looking for more obvious signs a child is on the autism spectrum.
“I think they’re looking for more severe characteristics in the clinical interview. They’re seeing the girl as being polite, smiling, giving eye contact and they just dismiss it,” Ms Bulhak-Paterson said.
Shen says she is the only clinical psychologist in Australia who specialises only in autism in women. Sienna Quarmby is one of her clients.
Ms Bulhak-Paterson believes there is orthodoxy within the health profession that still refuses to acknowledge that autism presents differently in women to men.
“There are many health professionals who don’t believe the female presentation,” Ms Bulhak-Paterson said. “They make comments like ‘Oh it’s just over diagnosed, there’s nothing clinical’ and that is very frustrating for me and for parents because they live it and they know how real it is and how distressing it is for their families.”
Calls for Questionnaires to be Adapted
The challenge in diagnosing girls with autism is a focus of Dr Ernsperger, who is spoke at a conference on the disorder in Melbourne last week.
She believes the diagnostic questionnaires doctors use for autism focus mainly on the male characteristics of the disorder and are yet to be adapted for girls.
“That doctor is going to do a diagnostic checklist … it may have 20 questions or so [but] they’re the sort of questions that lend themselves to male behaviour or boy behaviour,” Dr Ernsperger said.
Dr Ernsperger says she has been contacted by many women with autism spectrum disorders who say they have been able to mask their symptoms and be successful in school and university while struggling in other areas of life such as forming enduring friendships.
“I get a lot of emails from girls and women on the spectrum who say they’re good in school, meaning they could mask their behaviours in school,” Dr Ernsperger said. “And you hear that … quite often from women on the spectrum.”
There needs to be a change in the way autism disorders are diagnosed, according to Dr Ernsperger.
“Instead of rewriting these testing tools for autism, we should have different scoring levels. A boy would have to score 18/20 where the girl would have to score 16/20 in order to move on to the secondary testing for further diagnosis,” Dr Ernsperger said.
When Tori Haar was a teenager, her brother was diagnosed with autism. She knew there was also something different about herself but finding out what was discouraged.
“I got referred to this psychologist who basically told me that I was wanting to have this developmental disability that couldn’t be cured, that couldn’t be treated,” Ms Haar said.
The psychologist she saw went even further, telling her “that I was somehow messed up in the head because it was something that I wanted for personal reasons, rather than trying to find out reasons for how I think and how I am”.
When she was eventually diagnosed with Asperger’s syndrome, Ms Haar says it gave her the means to cope. She is now a psychologist.
“Getting a diagnosis is one of the most important and empowering things that I’ve ever done,” Ms Haar said. “I feel like it’s given me a language to understand myself and express how I’m feeling and to describe my experiences to others.”
Parents Warned Over ‘Charlatans’ Offering Bizarre Cures
Families with autistic children are being warned not to fall for “charlatans” offering fake cures which can end up costing them thousands of dollars. The roll out the National Disability Insurance Scheme – NDIS – will hopefully provide parents of autistic children some certainty, one of the things they crave most.
West Australian autism specialist Professor Andrew Whitehouse sheets that sense of uncertainty home to the very nature of autism, which has no clear cause and no magic bullet cure.
“People with autism tend to have characteristic behaviours of social impairment, language difficulties and some repetitive behaviours,” Professor Whitehouse says. “Autism can be managed extremely well and people with it can live long and fulfilling lives. But at the moment there’s no evidence for a cure.”
With no definitive answers Professor Whitehouse argues families of children with autism are left particularly vulnerable to quackery and claims of cures. The autism researcher has seen some truly bizarre things in his time.
“I have come across milkshakes (to) help cure autism, I have come across chelation therapy, where you administer harmful chemicals to the person with autism,” Professor Andrew Whitehouse said. “I have come across bowel bleaching. All of these are not just out there, they are very detrimental for the person with autism.”
Families Searched for Expensive, Fake Autism Cures
Sydney’s Jason Hameister and Adelaide mother Bec Payne, who have been friends for years and both have autistic children, have both embarked on a quest to find a cure for the condition.
Mr Hameister says when his daughter, Maia, was diagnosed with autism he hit the internet, a common mistake made by parents.
“It is such a field of misinformation in a lot of ways, and misinformation has a new breeding ground on the internet,” Mr Hameister said.
However, it did not stop him from trying therapies proudly proclaiming they could “cure” his daughter.
“The first one we really got into was craniosacral therapy. This is one where they place their fingers on the skull and around the skull in such a way that they believe they can manipulate the bones of the skull … believing that that then would cure a range of other illnesses and diseases,” Mr Hameister said. “We saw this woman for, it must have been, six months or so, paying like $60 a half-hour just for her just to sit there and place her fingers on Maia’s head.”
Ms Payne reckons she spent about $26,000 on phony promises for her four-year-old son Jed.
“And I was prepared to spend even more,” Ms Payne said. “But what can I do? You just get so caught up in it, you just want to believe them, and I don’t know… that’s where I weaken.”
Last year, after shrugging off the quackery, Ms Payne had a major triumph. South Australia Guide Dogs supplied Jed with special trained autism assistance dog, a black Labrador named Sammy. At the time the organisation said he was the youngest person in the county to have an autism assistance dog.
Jed can now put four words in a sentence and his mother says he is much calmer, thanks to the dog and a range of other proven therapies.
Call For Government to Provide Better Information
However, the assistance dog was not enough to eliminate Ms Payne’s desire to find a cure, and until a few weeks ago, she was saving for a US-based treatment that claimed to cure autism.
She would have spent thousands of dollars on it, if Mr Hameister had not stopped her.
“I want him to be able to speak to me and tell me what he wants,” Ms Payne says. “I love him to the moon and back but I don’t want him to feel the way his does. I can’t imagine it feels good. I am game to try anything for him and that’s where I am lucky that I have Jason … he’s my little watchdog.”
Professor Andrew Whitehouse believes state and federal authorities need to step up, providing parents with better information and a constant flow of it.
He says his experience has convinced him that, no matter how well informed the individual, they can still be vulnerable to hope, even if it is false.
“It’s the mystery of autism that leaves families with who have a child with autism vulnerable to charlatans and well meaning people who don’t have the evidence for their therapies,” Professor Whitehouse said. “It’s the mystery. Also there’s an element of guilt there as well, if I don’t try everything to help my child, who I love desperately, then I am doing a disservice to my child.”
30 Percent Increase in Autism in US Children
There has been a 30 per cent increase in the number of US children with autism in just two years, US health officials say, but experts say the rise may simply reflect better recognition and diagnosis of the order.
Experts are largely unfazed by the latest numbers, which suggest as many as one in 68 children have autism, saying they do not necessarily suggest increasing prevalence.
“It’s not that surprising because as people get more aware, the prevalence has always increased in a psychiatric disorder,” Cleveland Clinic Children’s Centre for Autism director Dr Thomas Frazier said.
The latest report by the US Centres for Disease Control and Prevention (CDC), which looks at data from 2010, estimates that 14.7 per 1,000 eight year-olds in 11 US communities have autism.
That compares with the prior estimate of 1 in 88 children, or 11.3 per 1,000, in 2008, and 1 in 150 children in 2000.
Autism encompasses a spectrum of disorders, ranging from a profound inability to communicate and mental retardation to relatively mild symptoms in people with very high intellectual ability.
Coleen Boyle, director of the CDC’s National Centre on Birth Defects and Developmental Disabilities, said while the report did not explain why rates were rising, it did give some clues.
For example, almost half of children identified as having autism in the latest report had average or above-average IQ levels, compared with just a third of children a decade ago.
“It could be doctors are getting better at identifying these children; it could be there is a growing number of children with autism at higher intellectual ability, or it may be a combination of better recognition and increased prevalence,” Dr Boyle said.
Autism Rate Likely to Continue to Rise
Dr Frazier said it was very likely that the current report was still undercounting autism rates among higher-functioning black and Hispanic children. Among black children with autism in the report, half also had intellectual disability, a more overt sign of problems.
That compared with just 35 per cent of white children with autism who also had intellectual disability.
Ultimately, Dr Frazier thinks the autism rate will settle at around 2 per cent of the population, or around 1 in 50 children.
Part of the issue may be the way the CDC measures autism, combing through health and school records of eight-year-olds within fewer than a dozen communities.
The study showed significantly different autism rates by region, ranging from 1 in 175 children in Alabama to 1 in 45 children in New Jersey, which could reflect access to healthcare and other factors.
The CDC said the latest data continued to show that autism was almost five times more common among boys than girls, affecting 1 in 42 boys versus 1 in 189 girls.
White children are more likely to be identified as having autism spectrum disorder than black or Hispanic children.
The CDC only funded 12 tracking sites for the current study and data from only 11 were included in the report, a drop from 14 sites in the report issued two years ago, a reflection of tight budgets at the CDC that forced the agency to scale back.
And while the data cannot be generalised to a national population, Dr Boyle said it was the best estimate available.
“It’s not a national probability sample, but it is a very robust estimate and it’s the best we have,” Dr Boyle said.
Most Experts Not Surprised
Rob Ring, chief science officer for the advocacy group Autism Speaks, said he did not think many autism researchers were surprised to see the increase. He said the CDC’s method relied on individuals already flagged by the healthcare and education systems.
“If you are not in those systems, you would not be counted,” Mr Ring said.
His group backed a 2011 study using a new research approach that found one out of every 38 children in South Korea may have autism.
The researchers used a painstaking research method that involved screening 55,000 children aged 7 to 12 in the South Korean city of Goyang.
The team surveyed parents about their children’s behaviour, then followed up with evaluations of at-risk children to confirm their diagnosis.
The population-based approach was designed to capture cases that might not be detected with methods that use school or medical records to identify autistic children.
Autism Speaks is partnering with the CDC to use the same research method in South Carolina, with results expected some time next year.
RELATED! New Research Predicts Autism Much Earlier
Autism, a disorder of neural development characterized by impaired social interaction, restricted and repetitive behavior. The signs of Autism all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not yet well understood.
Signs of ASD are diagnosed in the first three years of a child’s life, generally between the second and third year, the signs develop gradually, in some cases however, autistic children first develop more normally, and then regress.
New research has shown that children who develop autism may show signs of different brain responses in their first year of life, researchers say the study may in the future help doctors diagnose the disorder much earlier :: Read the full article »»»»
RELATED! Extra Brain Cells May Explain Autism
A new study suggests that Autism starts in the womb, researchers have found a remarkable 67 per cent increase in the total number of brain cells in the prefrontal cortex of new born babies with ASD.
Children with autism appear to have too many cells in a key area of the brain needed for communication and emotional development, say US researchers. Their findings help explain why young children with autism often develop brains that are larger or heavier than normal.
Dr Eric Courchesne says the finding of excess brain cells in the prefrontal cortex explains brain overgrowth in autism, and hints at why brain function in this area is disrupted.
Courchesne, of the University of California San Diego Autism Center of Excellence, and colleagues, have also found dozens of genes that may raise the risk of autism.
But genetic causes only explain 10 per cent to 20 per cent of cases, and recent studies have pointed to environmental factors, possibly in the womb, as a potential trigger.
The team found excess brain cells in each child with autism they studied, says Courchesne. And the brains of the autistic children also weighed more than those of typically developing children of the same age.
Researchers searching for an early indicator of autism say they’ve discovered a promising possibility, an impairment in the ability of the brain’s right and left hemispheres to communicate with each other.
The researchers did brain imaging scans – fMRIs – on 29 sleeping toddlers with autism, 30 typically developing kids and 13 children with significant language delays, but not autism.
All were between 1 and 4 years old. The scans showed that the language areas of the left and right hemispheres of the autistic toddlers’ brains were less “in sync” than the hemispheres of the typical kids and the children with other language delays. The weaker the synchronization, the more severe the autistic child’s communication difficulties :: Read the full article »»»»
UNRELATED! Scientists Wake Virus After 30,000 Year Slumber
Wakening the long-dormant virus serves as a warning that unknown pathogens entombed in frozen soil may be roused by global warming, the scientists said.
The virus, Pithovirus sibericum, was found in a 30-metre-deep sample of permanently frozen soil taken from coastal tundra in Chukotka, near the East Siberia Sea, where the average annual temperature is -13.4 degrees Celsius.
The team thawed the virus and watched it replicate in a culture in a petri dish, where it infected a simple single-cell organism called an amoeba.
Radiocarbon dating of the soil sample found that vegetation grew there more than 30,000 years ago, a time when mammoths and Neanderthals walked the Earth, according to a paper published in the US journal Proceedings of the National Academy of Sciences :: Read the full article »»»»
UNRELATED! Dr Maryanne Demasi’s Playing With My Heart, Again
As previously mentioned, I’m not a huge television watcher, discerning, no couch-potato. One show I must see each and every week – or I seriously get the grumps – is Catalyst.
For those not-in-the-know, Catalyst is a superlative Australian science program aired weekly on ABC TV, it’s always current, often a lark and most beautifully produced.
My favourite science reporter is back with another superlative question, “Is the role of cholesterol in heart disease really one of the biggest myths in the history of medicine?”
Michael’s time is spent making other folks land softly, easing their days, so they’re able to enjoy their evenings: He Likes To Worry!
Overtly fond of driven people, loves the energy, his client list is diverse, an English Brain Scientist, a Hotelier on the up, a PR firm and a half dozen special individuals. As well, he runs online campaigns for several brands, throws his fifty cents in for Unruly Media, takes on the odd guest editorial and lunches out in Melbourne every second day and can often be found walking The Tan, mumbling stories out loud.
“…what I like most about my world? The anonymity, I like that others get the kudos.”