Stuart Chaifetz kisses his son Akian Chaifetz, 10, on the head as they play in the backyard of their home in Cherry Hill, N.J., Wednesday, April 25, 2012. (AP / Mel Evans)
The father of a 10-year-old autistic boy in Cherry Hill, N.J., has posted a series of secretly recorded audio clips of school administrators bullying his son to YouTube.
Since being posted on April 20, the recordings have garnered more than 3 million hits.
Stuart Chaifetz, the father of 10-year-old Akian, obtained the recordings by dressing his son with a hidden recording device. Chaifetz said the idea to wire his son first came to him after receiving reports from his son’s school that Akian was acting out and being violent — something out of character for the otherwise “wonderful and happy child.”
After months of meetings with school officials failed to explain his son’s supposed violent outbursts, Chaifetz decided he had to know what was going on during the school day.
“I realized I needed to know what was happening in that class,” said Chaifetz in an online video introduction to the YouTube recordings.
On Feb. 17, Chaifetz wired his son with a hidden recorder before sending him to school. When his son returned, Chaifetz discovered hours of audio documenting bullying and verbal abuse by school officials.
“That night, my life changed forever,” said Chaifetz. “What I heard was so disgusting and vile. It happened not by other children, but by his teacher and the aides, the people who were supposed to protect him. They were literally making my son’s life a living hell.”
The recordings contain clips of the teacher and teacher’s aide shouting at his son, yelling at him to “Shut up!” and calling him a “bastard.” The recordings also catch the teacher’s aides having inappropriate conversations about drinking alcohol the night before and complaining about their spouses and other parents.
Chaifetz shared the recordings with school officials. The district superintendent responded in a statement saying that “the individuals who are heard on the recording raising their voices and inappropriately addressing children no longer work in the district.”
Chaifetz is now calling for a public apology by the teacher, teacher’s aide and school administrators. Only the teacher’s aide has been fired, said Chaifetz. Akian’s teacher has been moved to another classroom.
This is not the first case of parents of children with disabilities using recording technology to investigate suspected cases of bullying and abuse in the classroom. Since 2003 there have been at least nine similar cases across the U.S.
It’s a practice that comes recommended by Wendy Fournier, president of the National Autism Association.
“If a parent has any reason at all to suggest a child is being abused or mistreated, I strongly recommend that they do the same thing,” she said to The Associated Press.
But critics of the practice say that the privacy rights of the other children must also be considered.
George Giuliani, executive director of the National Association of Special Education Teachers and director of special education at Hofstra University, says that while evidence of the mistreatment of children is disturbing, secret recordings are not the answer.
“We have to be careful that we’re not sending our children in wired without knowing the legal issues,” Giuliani said to The Associated Press.
Chaifetz says that since making the recordings public, he has received thousands of emails, many from parents asking for advice about how to similarly wire their own children.
He advises them on how to do it, but always warns them: “Make sure it’s legal in your state.”
Chaifetz hopes that with more parents taking such actions, educators will think twice about mistreating students who cannot speak up for themselves.
“For the tiny percentage of teachers that do it, I hope that they live in fear every day that a kid’s going to walk in with a recorder,” he said.
With files from the Associated Press
(Reuters Health) – Doctors’ belief that certain antidepressants can help to treat repetitive behaviors in kids with autism may be based on incomplete information, according to a new review of published and unpublished research.
The drugs, which include popular selective serotonin reuptake inhibitors (SSRIs), are sometimes used to treat repetitive behaviors in people with obsessive-compulsive disorder (OCD).
“The main issue to emphasize is that SSRIs are perhaps not as effective at treating repetitive behaviors as previously thought. Further research will help confirm these findings in the long run,” said Melisa Carrasco, the study’s lead author, in an email.
For their analysis, Carrasco, a researcher at the University of Michigan in Ann Arbor, and her colleagues examined PubMed and ClinicalTrials.gov for randomized, double-blind and placebo-controlled trials — considered the gold standard in medical research — supporting the use of SSRIs and similar antidepressants in children with autism.
Their search yielded 15 trials. Five studies were excluded because they did not meet the researchers’ criteria. Another five were listed as completed but never published.
Carrasco’s team emailed the researchers on the unpublished trials to request their data. One researcher complied and sent the findings.
Of the six studies, three showed a benefit from SSRIs and three — including the unpublished study — reported some or no benefit.
Overall, the 365 participants in the six studies showed a small response to the SSRIs, but that association disappeared when the researchers accounted for the studies that were completed but never published.
When only positive findings get published, and negative ones never see the light of day, the evidence on a topic is said to be subject to “publication bias.”
As a result of including the unpublished data, “The research made it clear that the effects of (serotonin receptor inhibitors) treatment of (autism spectrum disorders) are considerably overrated,” Carrasco and colleagues wrote in the journal Pediatrics.
She told Reuters Health, however, that the new study does not mean the drugs are not useful for treating other conditions related to autism spectrum disorders.
“There is compelling data available, for example, in regards to their use in treating anxiety in autism, and there may still be potential… in treating additional aspects of autism as well,” she said.
The new study also had limitations, including there being limited data on the topic and a lack of a unified system to measure repetitive behaviors.
In an accompanying commentary, Dr. Scott Denne, at the Indianapolis University School of Medicine, wrote that the paucity of data “results in physicians being unable to make rational informed decisions” about the benefits and risks of using SSRIs to treat children with autism.
“You come to completely different conclusions based on the information you have,” Denne told Reuters Health. “There is a mechanism to make those data available and that data should be available on ClinicalTrials.gov whether it’s published or not.”
As a result of the 1997 FDA Modernization Act, ClinicalTrials.gov was created as by the United States’ National Institutes of Health and the U.S. Food and Drug Administration. The website serves as a listing of trials involving human subjects.
Several bodies including the NIH, Congress and an association of academic journal editors have passed guidelines and regulations encouraging — and in some cases requiring — researchers to register their clinical trials on the website.
In a separate study also published in the journal Pediatrics, researchers found the results for the majority of clinical trials involving children are unavailable.
Specifically, of 2,400 completed studies involving children and registered on ClinicalTrials.gov between 2000 and 2010, only 29 percent were ever published. On average, they were not published until two years after the study was completed.
Those researchers also found that only 53 percent of studies funded through the NIH were ever published.
“The problem is that existing clinical research policy does not guarantee availability of the results of all clinical studies and leads to biased health care decisions based on highly selected and incomplete information,” said the study’s lead author, Dr. Tatyana Shamiliyan of the Division of Health Policy and Management at the University of Minnesota in Minneapolis, in an email.
Dr. Sidney Wolfe, head of Public Citizen’s Health Research Group, told Reuters Health that children are sometimes prescribed drugs for uses that are not approved by the FDA. It’s called off-label prescribing.
Pharmaceutical companies cannot market a drug for an off-label use, but nothing stops a doctor from prescribing it.
Wolfe said, when children are prescribed medicines because of publication bias, it can be “very dangerous.”
Regarding the people who went through clinical trials that were never published, Denne told Reuters Health, “I think the public ought to demand that the results of their data, of what they really sacrificed for, should be available so other people can benefit.”
SOURCE:, and Pediatrics, online April 23, 2012.
Simone Sewell still shudders at the memory of the moment she was told her two-year-old daughter, Sienna, was autistic.
She and her husband, Geoff, sat in shock as the paediatrician spelt out the bleak future that awaited their first-born.
‘The doctor said Sienna would never fall in love, marry or have an independent life,’ recalls Simone. ‘With no hope of a cure, we were more or less told to live with it.’
Hope: Simone Lanham believes her five-year-old daughter Sienna is on the way to being cured of autism
Yet three years on and this grim future seems unlikely, given the great improvements in Sienna’s behaviour. Indeed, her parents believe Sienna, now five, is on her way to being cured.
It’s a staggering claim, not least because mainstream medicine insists autism – which affects nearly 600,000 UK children and adults – is a life-long condition.
Yet Simone offers countless anecdotes as proof of her daughter’s improvement. ‘For instance, like many autistic children, Sienna always hated noise, people and busy places,’ says Simone.
‘She would scream, have a tantrum or cry because she was so overwhelmed. Now I can go shopping to a supermarket with Sienna holding one hand, and her sister Olivia, who is three, holding my other without worrying whether Sienna will stay by my side or create a scene. This is how I know she is getting better.’
This progress has been achieved at a cost – the couple have invested £100,000 in behavioural and dietary therapies, and Geoff, who was in the pop opera group Amici Forever, has given up his singing career to help with Sienna.
She would line up her toys obsessively
It is not known what causes autism but it affects a child’s ability to communicate and relate to others. They are often withdrawn, mute, unable to make eye contact and prone to disturbed sleep and tantrums. Many never take part in mainstream education and some require full-time care.
Milder cases may struggle with communication, but be able to live a fairly independent-life. But even then, as the paediatrician told the Sewells, it was unlikely Sienna would have a truly self-sufficient future.
‘We were devastated,’ recalls Simone, 35. ‘Afterwards we just walked round a local park, bawling our eyes out, hardly able to speak. But I refused to write off my daughter. I felt there had to be something that would help her.’
Simone and Geoff, also 35, who live in Hampstead, North London, didn’t realise Sienna had a problem until a few months before her diagnosis. It’s only with hindsight they realised the ‘red flags’ were there.
For the first two years of Sienna’s life, she travelled with her parents as her father toured with Amici Forever.
‘She had tantrums, slept badly and would line up her toys obsessively,’ recalls Simone, ‘but I just thought she had a strong personality. As she started to talk, she didn’t use conversational language, but there were no other children around to compare her with so we didn’t realise anything was wrong.
‘But her behaviour deteriorated as she got older,’ Simone says. ‘Eventually, she would be awake for seven hours a night. She was very much in her own world, and wasn’t interested in other people.
‘Autism was the last thing on our minds. We were so naive. In fact it was only at her assessment that we realised something was wrong. The speech therapist said at her age she should have had about 50 words in her vocabulary. Sienna didn’t have anything like that.’
I refused to write off my daughter
An agonising six months of tests assessments followed before Sienna was formally diagnosed.
After the shock Simone spent hours searching the internet, desperate for possible leads to a cure, overwhelmed at the vast amount of opinion and advice.
Then fate intervened. Geoff decided to abandon his singing career so the family could have a more stable home life (they now run an entertainment agency). A farewell concert in his native New Zealand was arranged.
Hearing of their situation, Dr Debbie Fewtrell approached the couple. She believes autism is linked to an inflamed gut.
While the cause of this inflammation is not clear, it means autistic children can’t digest proteins found in foods such as bread and milk. As a result, tiny proteins leak into the bloodstream and act like opiates which turn off part of the brain and also cause or aggravate the symptoms of autism.
Blood and urine tests suggested Sienna’s gut was indeed inflamed, and she was placed on a gluten and dairy-free diet. ‘Within a couple of days, Sienna said “water” and pointed to the tap – something she’d never done before,’ says her mother. Though they cannot prove this was linked to a change in diet, it seemed more than coincidence.
The next step was a ‘specific carbohydrate diet’ – a regime avoiding complex carbohydrates such as bread, cereal and pasta to rid the gut of harmful bacteria and reduce inflammation.
Her behaviour improved within days of the special diet
Some may suggest the family’s peripatetic lifestyle was largely to blame for Sienna’s behaviour, but the Sewells say the diet is what has transformed her. ‘It made the most amazing difference,’ says Simone. ‘After about a month Sienna started to do imaginative play – something I’d never dreamt she could do.
‘Normally she would just line up her dolls but I came in one day to find her sitting with them on a little table and telling them: “We’re going on holiday to Crete.” I was flabbergasted. It was then I dared to believe we were actually getting somewhere and making progress.’
The Sewells also started giving her supplements such as zinc, selenium and Vitamin B6 injections – which some studies claim improves the behaviour of autistic children – and ‘detoxified’ their home to limit Sienna’s exposure to materials such as household chemicals that could be aggravating her condition.
Dr Fewtrell also recommended applied behavioural analysis (ABA). This involves teaching linguistic, cognitive, social and selfhelp skills to autistic children by breaking these down into small, repetitive tasks.
For example, if a child was attempting to learn to match pictures up, the therapist would initially direct the child to match the pictures by putting their hand over the child’s and directing them. Once the child has done this several times, the therapist may tap their elbow to prompt them instead. Eventually, the child should do it without prompting.
As well as only being available privately, it is also time-consuming. Simone found a practitioner in London, and Sienna, then three, began working with her for 12 hours a week. This has gradually increased to 33.
The Sewells believe they will confound the paediatrician’s bleak prognosis. ‘Sienna gave us cause to hope,’ says Simone. ‘Within a few days of starting the ABA therapy, she called out “Mummy” to me, just as a normal child would do as a sign of affection.
‘Her speech began to improve and she began to use connectives such as “but” in a sentence. Her reading and writing skills have developed rapidly in the past year.’
Sienna is at mainstream school, with her ABA helper in tow for part of the week. She is, says her mother, popular with her peer group and does ‘imitation’ play with her sister – who is not autistic – copying everything Olivia does.
Without evidence to prove the link between diet and autism, the medical establishment remains sceptical and maintains autism cannot be cured, only positively managed at best.
‘There is evidence early intervention can help a child cope with their condition,’ says Caroline Hattersley, of the National Autistic Society. She says while the NAS understands parents’ need to find something that will help, there are a lot of interventions, including ABA, ‘which may or may not help’.
She adds: ‘The bottom line is that, unfortunately, there is still no cure for autism.’
The Sewells are far more hopeful. ‘The future is so exciting and I visualise Sienna well, graduating, sitting round the family table telling us her news,’ says Simone.
‘By healing Sienna’s body from within and teaching her how to connect, I’m sure we can beat it.’
By Kathy Lette
Kathy Lette with her son Julius, who has asperger’s syndrome
Mothering a child on the autism spectrum is like trying to put together a giant jigsaw puzzle without the benefit of having a coloured picture on the box.
There is no owner’s manual. It’s like finding a baby under a spaceship and bringing him up as your own. I know this because my own son, Julius, was diagnosed with autism, aged three. I sat in stunned silence in a drab Victorian hospital as a doctor told me my cherished, beloved boy had a developmental disorder.
I remember the paediatrician’s voice being all light and falsely cheery – which was when I knew something was seriously wrong.
My son was so bright he had walked and talked early. Then at about 14 months, he suddenly lost his language. I’d presumed he simply had some minor ailment, so the word ‘autism’ slid into me like the sharp cold edge of a knife. This is a diagnosis which pulls you into the riptide and drags you down into the dark. I felt disbelief, followed by dismay and then by a fiercely protective lioness-type love.
Before Julius was born, all I knew about autism was that it was a lifelong disability chiefly characterised by an inability to communicate effectively. I now know it means not getting a joke, not knowing what to say, then saying the wrong things, being told off but not understanding why, doing your best but still getting it wrong, feeling confused, frightened, out of sync, all day, every day.
Denial is a common response of parents in my situation, hence the years of alternative medical rounds, trudging through a labyrinth of social workers, speech and occupational therapists and paediatric psychologists. For years I trekked here, there and everywhere in the endless search for experts. My son had so many tests that he must have thought he was being drafted into the astronaut programme.
I tried everything from cranial massage to karma maintenance. I ricocheted from psychoanalysts to biofeedback practitioners and other nouveau-voodoo nut-jobs with astronomical fees.
Next came the guilt. Was it something I ate while pregnant? Was it the glass of wine I shouldn’t have drunk? Was it something I should have drunk, like pureed beetroot? Finally, many experts, tests and schools later, my son was rediagnosed with Asperger’s syndrome, which is the high-functioning end of the autism spectrum.
Children with special needs are too often taunted and beaten up for being different, or sticky-taped with signs reading ‘Kick me, I’m a retard.’
I have never spoken publicly about my unique and wonderful son, but two years ago I started writing my 11th comic novel, and suddenly this other book about a single mother raising a child with Asperger’s came pouring out. As The Boy Who Fell To Earth is a fictional tale (my own husband is loving and supportive and our son has milder Asperger’s than the novel’s hero, Merlin), I planned not to mention my personal angle on the story. But then I was asked point-blank if it was true that my own son has Asperger’s.
I was flummoxed. Lying would imply that I’m embarrassed by my child and the opposite is true. I am fiercely proud of him. As he is now 21, I decided to ask his advice. Jules loves the novel and is sure, in his words, ‘that it will make people more understanding and less judgmental’. He hopes the book will encourage acceptance of eccentricities, idiosyncrasies and differences. And show ‘aspies’ in all their strange, offbeat, brilliant glory.
Not that living with a child with Asperger’s doesn’t have its challenges. Social workers tell the protagonist of my novel, Lucy, that being the mother of such a child will be a challenge, but an exciting one. This is as accurate as the captain of the Titanic telling his passengers they were in for a diverting dip in the briny.
First, there’s the constant bullying. Children with special needs are too often taunted and beaten up for being different, or sticky-taped with signs reading ‘Kick me, I’m a retard.’
Is it any wonder parents feel so over-protective? The hardest thing is to stop mollycoddling and let him grow up and venture out into the big, bad world, with all its strangers and dangers. For years I would never let Jules leave the house without a list of instructions as long as War And Peace and enough supplies in his backpack to set up a wilderness homestead.
Schooling is also a constant nightmare. Children on the autism spectrum are complex, and getting help is a postcode lottery. The system is designed with bureaucratic speed bumps to slow down a parent’s progress. But one thing is clear. Putting a special-needs child in a mainstream school is as useless as giving a fish a bath.
Overstretched, exhausted state school teachers too often treat children with special needs as if they are rare, feral creatures still adjusting to captivity. And who can blame them? Such children need specialist teaching in specialist schools, which councils are reluctant to pay for.
Kathy celebrating Christmas in Australia with Julius then 18, and daughter Georgie, 16
In cities, ‘mainstreaming’ means shoving your Asperger’s child into an already overcrowded classroom. When teachers are not trying to master rudimentary Somali, Hindi, Romanian, Russian, Arabic and probably a few words in Klingon, they’re also trying to cope with an assortment of special-needs children plus their untrained helpers, meaning there can be up to 44 people in a classroom. A sardine would feel claustrophobic.
Being told off for laziness or disruptive behaviour, or put in detention for failing to understand homework, it’s no wonder that, despite their often high IQs, the only subject at which Aspergic children excel during their school years is ‘phoning in sick’.
But waiting lists for special schools are so long that you face endless lobbying and pleading with local councils. I filled in forests of forms and saw squadrons of educational psychologists, most of whom look down their noses for a living. The technical term for this process is ‘being passed from pillar to post’.
Then there’s the isolation. The parent of a child with special needs suffers from creeping loneliness as everyone else’s children are getting As at school, going on ski trips and enjoying work experience at Vogue magazine and top barristers’ chambers. It’s like starving to death outside a banquet hall.
Julius embarrassed his mother when Hugh Jackman, pictured, was over for dinner
If only there were a self-help book for social lepers. As the mother in my novel, Lucy, discovers, the playground sandbox invariably becomes a quicksand box as other parents, fearing some leprosy-like contagion, abandon you to a numbing silence.
While based on many of my own experiences, the book also draws on all the other plucky parents I’ve met, caught in the soul-destroying struggle to get the right educational and medical help. The parent of a special- needs child has to be his legal advocate, fighting his educational corner; his personal scientist, challenging doctors and questioning medications; his executive officer, making difficult decisions on his behalf; and also full-time bodyguard and bouncer.
But although the endless medical rounds have been financially bankrupting, and fighting educational bureaucracy has been exhausting, life with my deliciously quirky son has also brought me much joy and hilarity. This is because people with Asperger’s, or ‘Asparagus syndrome’ as he calls it, see life through the other end of the telescope.
They have a literal, lateral, tangential logic that can be charmingly disarming. ‘What is the speed of dark?’ my son enquired one day. And ‘If there’s a happy hour in bars, is there a sad hour too?’ Or ‘Is a harp just a nude piano?’ He’s always asking questions I can’t answer, such as whether you can use yo-yos on the Moon; why men have nipples and, more profoundly, why do countries go to war to show other countries that going to war is wrong?
Aged five, he explained to me that time is simply the universe’s way of stopping everything happening at once.
When a kindergarten teacher asked him what he wanted to be when he grew up, he replied, logic-ally, ‘taller’. Then he asked her if she would rather be buoyant or flamboyant. When I whispered to him once that a politician we were about to meet was ‘two-faced’, he immediately asked her why, if she had two faces, was she wearing that one, as it was so old and wrinkly?
But there can be dangers. When, aged 12, I asked him to lock the door or burglars might steal my jewellery, then came home to find the door ajar, he explained, perplexed: ‘Well, why would men want jewellery?’ When I say, ‘you’ll have to fight me for the last cupcake’, he squares up.
And I doubt it enhanced his educational prospects when he asked his intimidating headmaster what he wrote on his driver’s licence for hair colour, as he was completely bald?
Worse was the time Jules asked a tattooed muscle-bound biker if he’d ever noticed that his chin looked like upside-down testicles. My survival technique at times like this is to turn around innocently and say to anyone within earshot: ‘Who is this child and why is he calling me Mum?’
As you can imagine, this candour makes for many comical social situations which I tried to capture in the novel. But basically, when parenting a child with Asperger’s it’s best to just strap a shock absorber to your brain. Because Aspergic people have no filter, they always say exactly what they’re thinking, which means parents are constantly tip-toeing through a social minefield. You never know when you will touch a trip wire.
For example, a famous movie star was at my home for dinner one night (actually, I don’t mean to go for Gold in the Name Dropping Olympics, but it was Hugh Jackman) and I was flirting for my native Australia. In my besotted, deluded mind we were both just about to leave our spouses and elope to the Caribbean when my son, then aged 13, walked in. I leapt up to embrace and kiss him, casually commenting that he was growing a moustache.
Experts now believe that George Orwell, left, and Thomas Jefferson were possibly on the autism spectrum
My son gave me a measured, objective once-over. ‘Well, so are you,’ he said, matter-of-factly. ‘See all the hairs on your top lip? There’s millions of them. You have one or two on your chin as well.’
If only I’d taken a tip from Mother Nature and eaten my young, I thought, aghast.
It is well known that creativity is associated with a variety of cognitive disorders. H. G. Wells was so eccentric he had only one school friend. Albert Einstein took a job in a patent office because he was too disruptive to work in a university. Isaac Newton was able to work without a break for three days but couldn’t hold a conversation. Experts now believe Mozart, Van Gogh, Andy Warhol, George Orwell, Charles de Gaulle, Thomas Jefferson and even Jane Austen’s Mr Darcy were on the autism spectrum.
But with the onslaught of cutbacks, youngsters with less severe disabilities such as Asperger’s or autism are losing out in the scramble for funds. Their handicap may be less obvious than those in a wheelchair or wielding a white stick, but they still need and deserve help and the promise of a life not wasted away in a bedsit living on benefits. It’s sobering to note that rates of poverty, divorce, depression and unemployment are much higher among families with special-needs children.
People with Asperger’s might not contribute in conventional terms but that doesn’t make them less valuable and it’s up to us to help them flourish, starting with stamping out the bigotry that excludes people with disabilities from mainstream life. I don’t like the terms ‘normal’ or ‘abnormal’. I prefer ‘ordinary’ and ‘extraordinary’. And these extra-ordinary children have so much to offer, it’s criminal to squander their considerable talents.
Professionals, with their oxytocin nasal sprays and neural circuitry rewiring, predict a ‘cure’ for autism in 50 years or so. But will we then lose our ingenious scientists, virtuosos and innovative artists? My own vivid, original, brilliant boy is now volunteering at Oxfam and taking a course on radio announcing. With his encyclopedic knowledge of sports (he’s Wikipedia with a pulse) he hopes to become the world’s quirkiest sports commentator, if only someone would give him a chance.
With support, encouragement and love, these unique individuals can fulfil their exceptional potential. I hope my novel helps destigmatise Asperger’s while also promoting tolerance, understanding and acceptance. And that it gives some comic comfort and much-needed camaraderie to the thousands of parents struggling to raise special children. Because trying to cope on your own is as effective as standing up to Voldemort with a butter knife.
People with Asperger’s often feel they’re drowning in their own brain waves. I hope this novel, in its own small way, acts as a literary life raft.
The Boy Who Fell To Earth, by Kathy Lette, is published by Bantam Press, priced £12.99. To order your copy at the special price of £10.99 inc p&p, call the Review Bookstore on 0843 382 1111 or visit MailShop.co.uk/books.
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