The Autism News | English


Life with autism is a daily reality for millions of families around the world. It is an equal opportunity condition: you can be rich or poor, middle-class or working class. It doesn’t discriminate by race, region or religion. Neither is age. Recent research suggests a link with older parents. However, I have met enough young parents of children with autism to certainly question this idea. The Caribbean – and Guyana in particular – is no exception. There are no figures, no surveys, no analysis on the incidence of autism in Guyana. The US currently uses a figure of 1 in every 90 kids being born with the disability. So even if we are to be generous with this figure and extrapolate, to say 1 in 100 Guyanese kids, we are looking at any one time of about 5000-6000 Guyanese on the autism spectrum. Ignorance about the condition by Guyanese professionals and the public is still widespread which means many autistic children are likely to either be hidden away or, be mis- or un-diagnosed.

So you want to know about a parent’s experience of autism? Picture this: you and your spouse await the much longed-for baby; scans and tests are fine. You breathe a sigh of relief as you count 10 fingers and 10 toes as you cuddle him in your arms after an uneventful birth. All is normal as the doctor pronounces him healthy. At three months, he’s growing well, achieving his milestones. He gurgles, looks at you and smiles. At 10 months, he says his first words, takes his first steps, reaching out towards you. He’s growing up fast!

And then one day when he’s 13 months old, you try to show him an airplane in the sky. He looks at your fingers and tries to grab them instead. He starts rocking backwards and forwards repetitively at 15 months, screams intermittently for no apparent reason, bangs his head on walls, other kids steer clear of him and start laughing and pointing in his direction. He loses the few words that he acquired. At 16 months all language has disappeared, he is crying a lot, seems angry and frustrated, and has major meltdowns in shops and on the street. Then one day when he is about 24 months old, you call his name. He does not look at you, but continues spinning his toy.

The diagnosis – if you are fortunate enough to have access to a skilled doctor/paediatrician able to spot these things -comes. He is on the autism spectrum: where ‘high functioning’ means he might do well at school, but with extremely poor social skills which cause no end of problems throughout his life, even leading to suicide; and ‘low-functioning’ where he cannot access an education because he cannot, speak, concentrate, has outbursts and is socially marginalized.

You are angry at everyone: your spouse, the doctor/paediatrician, God, life, the world, even other people for having ‘normal’ children. Your relatives do not want to know about your ‘problem child’. Your ‘in-laws’ shun him and favour their other grandkids. You cry uncontrollably because you look at your child and see all your dreams for him slowly dissipate: conversations about everything he should have been interested in, playing football or cricket with him in the yard, the sports days, the numerous school graduations, the gawky teen phase, the university, the first crush, the love interests, the marriage, the good job, the grandchildren, the good life…all up in a whiff of smoke. Gone. Just like that.

Your marriage might suffer as divorce rates are way higher than average for parents of autistic children. As a single mother it would be impossible to afford specialist care or schools if they exist and hold down a full-time job, especially if you are an unskilled worker. You start to neglect yourself, go into a depression spiral, your other kids suffer, your autistic child needs your help more than ever…you need help for your child more than ever. Behavioural problems are getting worse. He’s smearing excrement on the walls, you have to lock the fridge and cupboards as he would eat everything, given the chance. You have to lock windows as he does not recognize danger so will climb anywhere. You have to lock doors as he would head out the door and keep walking, given the chance. You stop going out. Limes and outings are ancient history. His only time of peace is when he sleeps. But even that does not last long as if he is not sleeping fitfully, he is shouting for food and drink at two in the morning. Reasons for hope are thin on the ground. Is there an end to these feelings of helplessness, hopelessness; this nightmare?

Welcome to the world of the autistic child and family, an unforgiving drama unfolding in a house somewhere near you anytime, anywhere. The details and the magnitude might vary – we have experienced some of the above with our autistic son, and the other experiences have been related to me by other anxious parents. Each child with autism presents differently. The tell-tale signs are, however, sadly the same.

Autism can be a dark, forbidding and lonely place. But you love your child and you want to help him. Where do you turn to? If you are fortunate enough to live in the developed world, masses of health workers, therapists and consultants will be regularly descending on your front door before too long, having been penciled in on your ‘people to see list’. Your child will be tested, re-tested many times and diagnosed, and placed in a school where appropriate 1:1 intensive behaviour-based education is offered to help him achieve his potential, whatever that might be.

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The Autism News | English


(CNN) — Watching a child take his first steps is one of the biggest milestones for a parent.

Lindsay Williamson says the moment she heard her son, Reed, call his father “Daddy” instead of “juice box” was just as amazing.

He was a month shy of his third birthday, and the family had spent months in autism evaluations that Reed wouldn’t participate in.

“We were not sure we would ever hear ‘Daddy,’” said Williamson, whose family lives in Lewes, Delaware. “It meant so much to us.”

On World Autism Awareness Day, CNN iReport asked families affected by the developmental disorder to tell the world what their lives are like. Parents of children along the autism spectrum described incredible highs and lows: Desperation for answers about why autism rates are rising, fears about their children’s prospects in adulthood, but also great pride in watching them develop and overcome obstacles. ‘Never give up’ Early diagnosis and better access to treatments have helped families reach goals they weren’t sure were possible.

Lindsay Mansfield’s son, Travis, made little to no eye contact when he was diagnosed with autism in the first grade. Loud sounds frightened him. He would clap his hands and rock or jump up and down in crowded places.

It was draining for the family until they learned how his brain worked.

“We all began to learn the skills. It wasn’t just about him; it was also about us, the people who interacted with him,” Mansfield, of Queen Creek, Arizona, wrote in her iReport. “We all began to learn how to communicate through these situations. If something is loud, cover your ears. Too many people? Maybe there’s another way we can get through this store.”

To get through stressful homework sessions, she used blocks for addition and subtraction “so he could touch every one.”

Today, Travis is thriving in fourth grade. Mansfield said he has friends and sits at the dinner table and talks with his family.

“Never give up,” she said. Waiting for ‘Mama’ Parents of children with autism say they learn to measure milestones differently. They appreciate the successes, however late they come.

Mothers of children with autism can wait years to hear their child say the words, “I love you, Mommy” — or even call them “Mommy,” said Lin Wessels, whose son, Sam, is 10.

“I remember distinctly the first time Sam said ‘Mama’ and he was actually meaning me. I started bawling,” she said.

Sam was about 3 years old at the time and had stopped speaking. He was learning to express himself using sign language and cards with pictures on them.
“That all helped Sam to realize that words have use — that by using them, something happens. It was just kind of a progression that ‘Oh, that’s Mom, and I can call her Mama and she will come.’”

Wessels, who lives in Rock Rapids, Iowa, felt another wave of pride last year when she saw Sam swinging in the backyard all by himself. Other children are able to learn how to swing just by watching others. Sam, who struggles with coordination, required years of therapy to be able to pump his legs while pushing and pulling the ropes, all while balancing his body on the seat.

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The Autism News | English

Watching a child take his first steps is one of the biggest milestones for a parent.

Lindsay Williamson says the moment she heard her son, Reed, call his father “Daddy” instead of “juice box” was just as amazing.

He was a month shy of his third birthday, and the family had spent months in autism evaluations that Reed wouldn’t participate in.

“We were not sure we would ever hear ‘Daddy,’” said Williamson, whose family lives in Lewes, Delaware. “It meant so much to us.”

On World Autism Awareness Day, CNN iReport asked families affected by the developmental disorder to tell the world what their lives are like. Parents of children along the autism spectrum described incredible highs and lows: Desperation for answers about why autism rates are rising, fears about their children’s prospects in adulthood, but also great pride in watching them develop and overcome obstacles.

‘Never give up’

Early diagnosis and better access to treatments have helped families reach goals they weren’t sure were possible.

Lindsay Mansfield’s son, Travis, made little to no eye contact when he was diagnosed with autism in the first grade. Loud sounds frightened him. He would clap his hands and rock or jump up and down in crowded places.

It was draining for the family until they learned how his brain worked.

“We all began to learn the skills. It wasn’t just about him; it was also about us, the people who interacted with him,” Mansfield, of Queen Creek, Arizona, wrote in her iReport. “We all began to learn how to communicate through these situations. If something is loud, cover your ears. Too many people? Maybe there’s another way we can get through this store.”

To get through stressful homework sessions, she used blocks for addition and subtraction “so he could touch every one.”

Today, Travis is thriving in fourth grade. Mansfield said he has friends and sits at the dinner table and talks with his family.

“Never give up,” she said.

Waiting for ‘Mama’

Parents of children with autism say they learn to measure milestones differently. They appreciate the successes, however late they come.

Mothers of children with autism can wait years to hear their child say the words, “I love you, Mommy” — or even call them “Mommy,” said Lin Wessels, whose son, Sam, is 10.

“I remember distinctly the first time Sam said ‘Mama’ and he was actually meaning me. I started bawling,” she said.

Sam was about 3 years old at the time and had stopped speaking. He was learning to express himself using sign language and cards with pictures on them.

“That all helped Sam to realize that words have use — that by using them, something happens. It was just kind of a progression that ‘Oh, that’s Mom, and I can call her Mama and she will come.’”

Wessels, who lives in Rock Rapids, Iowa, felt another wave of pride last year when she saw Sam swinging in the backyard all by himself. Other children are able to learn how to swing just by watching others. Sam, who struggles with coordination, required years of therapy to be able to pump his legs while pushing and pulling the ropes, all while balancing his body on the seat.

“He was 9, and I started crying, because you don’t know if you’ll ever see your child do those things — things other children do when they’re 4,” she said. “Those kinds of things give you a lot of hope that there’s more to come.”

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The Autism News | English


Newswise — Though autism is often not diagnosed until the age of three, some children begin to show signs of developmental delay before they turn a year old. While not all infants and toddlers with delays will develop autism spectrum disorders (ASD), experts point to early detection of these signs as key to capitalizing on early diagnosis and intervention, which is believed to improve developmental outcomes.

According to Dr. Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, Md., parents need to be empowered to identify the warning signs of ASD and other communication delays.

“We want to encourage parents to become good observers of their children’s development so that they can see the earliest indicators of delays in a baby’s communication, social and motor skills,” says Dr. Landa, who also cautions that some children who develop ASD don’t show signs until after the second birthday or regress after appearing to develop typically.

For the past decade, Dr. Landa has followed infant siblings of children with autism to identify red flags of the disorder in their earliest form. Her research has shown that diagnosis is possible in some children as young as 14 months and sparked the development of early intervention models that have been shown to improve outcomes for toddlers showing signs of ASD as young as one and two years old.

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Children with autism need special support so they can flourish in traditional schools.

Currently, the Southwest Autism Research and Resource Center works with school districts to help educators build internal capacity for supporting the unique social and behavior challenges that face children and with autism.

“We have a very robust education and training calendar here where teachers can come get training and then we are also in the classroom providing support, feedback and coaching to teachers or aids to help our kids,” said Doctor Daniel Openden, Vice President and Clinical Director at SARRC.

Gabi Bryan, a mother whose 5-year-old son Lucas has autism, knows first-hand how critical this support is. Lucas was diagnosed at 2-years-old and referred to SARRC for the early-intervention Jumpstart program, which provides parents with an introduction to autism.

Lucas attended SARRC’s Community School pre-kindergarten classroom from age four to five, then transitioned to kindergarten in the Levine School District, where SARRC was able to consult with the school to help train the teacher and aid in Lucas’ kindergarten classroom.

Lucas initially experienced some problems in the classroom, including struggling to transition to circle time and stay seated during the activity and running around classroom during activities where the students were supposed to be seated.

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The Autism News | English

CHILDREN with autism are being targeted by bullies in schools, shocking research has discovered.

More than half of parents of autistic children said they had been victimised rising to 87% of families with children with Asperger syndrome or higher-functioning autism.

And a study by the University of Manchester has found children with autism are two to three times more likely to be bullied than other children.

In cases where children with autism have been bullied, two-thirds of parents said their children have developed mental health problems.

The National Autistic Society (NAS) Cymru has now published advice for parents of children with autism who are worried about bullying in school.

Neil Ingham, of NAS Cymru said: “We are hearing more and more from concerned parents who are unsure how to help their child cope with bullying and how they can approach their child’s school.

“Bullying can have a devastating impact on the life of a young person with autism and our research has found that playground bullying can lead to mental health problems and setbacks in a child’s education and can potentially damage their outcomes later in life.

“Nearly half of all children with autism have been bullied and, because of the communication difficulties associated with this condition, it can be particularly difficult for a person with autism to adopt the strategies and techniques they need to respond and make sense of their experiences of bullying.”

Jonathan Hanna, now 22, who lives in Cardiff, has Asperger syndrome and was bullied while at school.

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Jennifer Jacobs says she knew something was amiss with her son Oliver when he was only two weeks old.

She had the experience of having two older children and was concerned that Oliver developed severe acid reflux and didn’t sleep more than two hours until sometime after his second birthday.

“He would scream like he was in distress.”

At one years old Oliver started focusing on repetition and rituals. “He would watch the same Teletubbies video over and over and over. If you stopped it he’d freak out.”

Jacobs tried to have her son assessed but their doctors in New Zealand, where they were living at the time, told her not to worry, that it was just a developmental delay and that they should treat the acid reflux first.

A couple years ago, the family returned home to B.C., settling in North Vancouver. Faced with a six-month waitlist to get Oliver diagnosed in the public health system, and knowing early intervention is crucial, Jacobs chose Monarch House Autism Centre in Burnaby.

Operated by private health care provider CBI Health Group, the autism treatment centre was able to do the assessment within a couple weeks. Jacobs’ family helped cover the $2,600 cost.

She recalled it was difficult to watch the assessments, because she could tell Oliver wasn’t faring very well.

And when he was finally formally diagnosed with autism, Jacobs, 37, can’t say she was particularly surprised.

Nevertheless, “I was completely overwhelmed, it’s ‘I don’t know what to do.’”

Growing awareness of autism

Jacobs realizes now how fortunate the family is to be in British Columbia. While funding varies from province to province, for about 10 years B.C.’s Ministry of Children and Family Development has provided $22,000 per year to cover the cost of therapy for each child under age six diagnosed with autism.

This is where Monarch House comes back into the picture for Jacobs.

Located in the former regional headquarters for 7-Eleven just off Canada Way, which was gutted and rebuilt specifically for Monarch House’s needs, it was created to help families deal with the complexities they face in ensuring their autistic children can receive therapy in a timely fashion, explained Chelsea Ganam, its director of clinical services.

Once eligible for funding, parents have to navigate government bureaucracy, keep on top of waitlists, find and hire behaviour interventionists and other treatment providers, schedule them and deal with payroll, purchase learning resources, all while dealing with the stress of having to constantly advocate for their children.

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So many Canadian children are taking the drugs known as atypical antipsychotics that doctors are being asked to watch for major complications – including dramatic weight gain, tremors, and abnormal face and jaw movements.

Once reserved for schizophrenia and mania in adults, one antipsychotic alone, risperidone, was recommended by Canadian-office-based doctors for children 17 and younger a total of 340,670 times in 2010 – a near-doubling since 2006 – according to data provided to Postmedia News from prescription-drug tracking firm IMS Brogan.

The increase in prescriptions for children as young as six is raising concerns that the drugs are being overused.

Some experts say too little is known about the effects on a child’s cognitive, social and physical development, and that the side effects may set children up for serious health problems later in life.

These concerns were the driving force behind the creation of the world’s first clinic to help children cope with the side effects of such medications at BC Children’s Hospital in April.

Dr. Jana Davidson, a child and adolescent psychiatrist who helped establish the specialized clinic, said in an interview that children taking such medications have an increased risk of developing pre-diabetes, high cholesterol levels and obesity, compared to other children not taking the medication.

In B.C., where 5,000 kids are believed to be taking antipsychotic medication, children newly prescribed the drugs or those already experiencing side effects can be referred to the clinic. They receive coaching from a physiotherapist about the need to be more physically active, nutrition advice from a dietitian, nursing care and treatment from a psychiatrist and endocrinologist.

“We are really grateful we were able to get funding from the Provincial Health Services Authority to open this clinic. We’ve seen 79 kids under the age of 18 so far and we already have a four-week wait list which we want to get down to three,” said Davidson. Davidson said she helped create the clinic because of her increasing alarm over the side effects of treatment in her patients. While she believes the medications are sometimes prescribed inappropriately, they are often useful for a range of disorders including severe aggression, mania in bipolar disorder and schizophrenia. But the side effects can be serious.

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The problems of a south Donegal family with four autistic children were highlighted on national radio last weekend when it emerged that the children had been segregated in a wired off area during play breaks at school.

The Brogan family, Patrick and Maria and their four children Martin, Cassie and twins Daniel and Pauric all live just outside Mountcharles and the children attend the local St. Peter’s NS in the village.

Speaking from Mountcharles Valerie Cox of the Pat Kenny Show said that the two older children had been in mainstream school for the last number of years but with the addition of a further three autistic children, the school now qualified for a dedicated autistic classroom but this was not ready as yet but developments are very well advanced.

It has now been confirmed that work on this classroom will commence during the mid-term break.

Patrick Brogan the father of the four children said, “I was approached by another very distressed parent who told me that the children were being separated and not allowed to play together and found that the children were enclosed in a security fence that you would see on a building site and left by themselves.

“I pleaded with the school to take them out of it but they said that they couldn’t if they were to ensure safety due to lack of resources.

“After our complaint, the wire fence came down but was replaced by a wooden one – this was just a cage, nothing but a cage; it was not a solution.”

Another mother commented on the RTE show, “The exclusion of these children is socially damaging and long term will deprive them of their social skills – there must be an alternative.”

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(CNN) — Alissa Welker would switch the lights on, off, on, off, on, off — however many times it took to feel “right.” When she was 9, she’d spend the equivalent of an adult workday doing these kinds of rituals. She also washed her hands excessively, avoided sick people and barely ate because she feared food poisoning.

Mystery Almond has also felt that she needed to wash her hands more than most people, to the point that her classmates picked on her. She would see words spelled out in her head — “like reading a book” — telling her to do things, like hitting a girl in second grade who taunted her for obsessing over hand washing.

Alissa, 17, and Mystery, 10, have different symptoms, but they both have had feelings of needing to act in certain ways that are out of the ordinary, as well as intense fears. These are signs of obsessive-compulsive disorder, which is thought to affect 1 in 100 kids, according to the International OCD Foundation.

“Sometimes I feel like, with my OCD, I feel sad. It feels like a darkness has overtaken me. It’s a real bad feeling,” said Mystery, of Coushatta, Louisiana.

Parents, kids, teens, school personnel and mental health providers have a comprehensive resource for learning about pediatric OCD at the International OCD Foundation’s new OCD in Kids website. It includes the personal stories of young people who have OCD, so that kids and teens can learn about their peers’ experiences.

The site launched this week for the organization’s OCD Awareness Week, which culminates in a national event in Boston on Saturday that will be streamed live on the organization’s website.

Children as young as 3 or 4 can show signs of OCD, said Jeff Szymanski, executive director of the International OCD Foundation. But the onset is usually around ages 10 to 12 and the 18 to 22 age group. Boys tend to have symptoms earlier in life than girls. Symptoms include unwanted thoughts that produce fear and anxiety, and repetitive behaviors aimed at getting rid of those ideas.

Doctors draw the line between normal childhood behaviors and signs of OCD when kids engage in repetitious behaviors that become time-consuming. Children may become fixated on thoughts that they just won’t move away from. And they may not necessarily realize they’re not acting normally.
“For the most part, adults realize that these symptoms don’t make any sense. They get that this doesn’t make a lot of sense,” Szymanski said. “Kids don’t necessarily have that perspective.”

A standard behavioral treatment for OCD is called exposure therapy, a kind of cognitive behavioral therapy aimed at decreasing anxiety associated with particular phenomena. For children, this often involves naming OCD as the “bully or “monster” and chasing it away, Szymanski said. This helps kids deal with their scary, unwanted thoughts.

Medication may also be prescribed. A recent study in the Journal of the American Medical Association found that kids who had cognitive behavioral therapy for OCD, in addition to medication, tended to show more improvements than those who only took medication.
Some kids get good treatment and never experience OCD symptoms again; others will have it throughout their lives, with some periods being better than others. It may go away in childhood and come back in adulthood.

Alissa’s mother, Vicki Gonzalez, had never heard of OCD before Alissa came to her and told her about these feelings. Gonzalez turned to the internet and discovered that Alissa’s symptoms seemed to match up with that condition.

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