Still a mystery, autism spectrum cases growing rapidly

Date Published | May 30, 2007


BY DAVID DUCHARME

It has quickly become one of the biggest issues in medical science, and the fastest growing developmental disorder worldwide.

It’s commonly known as autism. But autism spectrum disorder (ASD) is now the umbrella idiom for the group of neurological disorders to which children are born predisposed.

No one person with an ASD responds or behaves exactly like another, even with the same diagnosis. But each has common ties.

Autism affects and changes the way the brain processes information, resulting in difficulties with communication and social interaction; unusual patterns of behaviour, activities and interests.

Disturbingly, what causes and triggers ASD is still unknown. The frequency of diagnosed cases, however, is increasing at an alarming rate.

The autism field is a young one.

Coined by Leo Kanner in a 1943 research paper entitled, Autistic Disturbances of Affective Contact, the term ‘autistic’ literally translates to “alone.”

An excerpt from that paper reads, “Since 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits - and, I hope, will eventually receive - a detailed consideration of its fascinating peculiarities.”

Kanner’s subjects each displayed symptoms of communicative and interactive difficulties and unusual interests. The children he identified were (often) previously labelled as schizophrenic and institutionalized.

Classic autism is a common spectrum disorder. It’s symptoms are “classic” in that they are most often associated with autism. They include: a lack of formal communication; rocking, head banging and hand flapping, lack of eye contact and the inability to interact socially. It is a spectrum disorder because its impairments differ greatly on a case-by-case basis.

Asperger’s Disorder is a fascinating, rare segment of the spectrum. Those with Asperger’s are often extremely high functioning, intelligent and verbal. However, they have difficulty with social interaction, interpreting unspoken social cues and are prone to eccentric behaviour.

They can become experts on topics and may only want to discuss those topics, but are unaware that what they are interested in may be of little interest to others.

Comedian Dan Aykroyd is one of the few public figures in Canada to have openly discussed having the disorder.

“I have a fascination with police and I always have to have a badge with me,” Aykroyd said in a 2004 NPR interview. “My grandfather was a Mountie. If I don’t have a badge on me, I feel naked.”

Aykroyd was diagnosed with Tourette’s syndrome and Asperger’s as a child in the early 1960’s.

Albert Einstein and Sir Isaac Newton are among history’s diagnosed or ASD suspected.

No biological marker is linked to autism. There is no chromosomal or blood test in existence to indicate if a child is autistic.

To be diagnosed, children must be observed displaying: difficulty with social interaction, impairment in communication and a pattern of restricted interests.

But the expression of symptoms can vary greatly among individual children. Also, kids labelled “normal” can often be observed behaving in ways generally classified as autistic.

So the question becomes not only does a child truly have a particular symptom, but also to what degree do they have it and where in the spectrum does a child fit?

The process can be quite subjective, according to Sudbury pediatrician Dr. Shawn Murray.

Murray is a specialist in the diagnosis and medical treatment of ASDs. He says a variety of factors combine to make assessment and diagnosis difficult for everyone.

“Once families are in a professional’s office, it becomes a balancing act. The diagnosis still has a stigma attached to it as well. It can take a lot of time for families to come to terms,” he said.

Murray is among a small group of three local doctors struggling to keep up with the sharp rise in ASD caseload. With a lack of services in Sudbury, long waiting lists can leave families in a state of limbo.

“From a resource point of view, it can be very difficult to get a timely diagnosis,” added Murray.

Early intervention is key. But barriers to formal, standardized treatment in Sudbury are a lack of available professionals, waiting lists and expense.

Applied behaviour analysis (ABA) is the most widely accepted form of treatment for autism. ABA is a behavioural modification approach to learning based on the work of Dr. B. F. Skinner. Highly structured and rigorous, it is centred on behaviour analysis and one-on-one teaching, making strategic use of rewards.

Intensive behavioural intervention (IBI) is based on the basic principles of ABA and is most effective in teaching pre-school-aged children. IBI includes frequent and direct measurement of a child’s development, making changes in learning or behaviour highly discernable.

Speech and language therapies are often effective in less severe cases.

While families continue to cope with the realities of ASD, Canada’s federal, provincial and territorial governments have a challenge ahead in allocating resources at a level that matches the rise in caseload.

And as research continues, medical science is left to fuse together a jumbled mix of traditional views and new findings.

The Yale School of Medicine released a study on April 21 of this year that found toddlers with ASD who have trouble making eye contact with people do not have difficulty in looking at photographs of faces. They also spend most of the time looking at photos examining…the eyes.

“This is a surprising finding, given that avoiding eye contact is one of the classic hallmarks of autism,” said Chawarska, in a Yale University news release.

Such are the mysteries of autism.

Autism on the rise

Local schools, families struggle to keep up

By Monique Balas / The Bulletin

Published: May 20. 2007 5:00AM PST

Colin O'Connor's mischievous blue eyes twinkle when he laughs, which is often, and he moves with a frantic energy. The 6-year-old enjoys playing games with his stuffed dolls, using them to mimic social situations, and he is friendly to strangers.

Colin is also autistic.

Autism, a developmental disorder that has no known cause, comes in as many shapes and sizes as children do. The fact that there are so many more children with the disorder now than there were only six years ago presents unexpected challenges for school districts and families of children with autism.

Colin's mother, Terri O'Connor, estimates her family spends about $2,000 each month to supplement her autistic son's education with tutors, a slew of therapists - speech, occupational, physical - and a developmental physician to work with Colin.

"The district has provided as best they can," she said. "What my experience is, their caseload is astronomical. There is just no way that they can think about my child ... 10 minutes before they have to meet with me."

The O'Connors, the school district and the High Desert Education Service District have all been feeling the effects of a creeping increase in the number of students diagnosed with some form of autism.

In Bend-La Pine Schools, there currently are 124 students receiving specialized education for autism, said Patti Craveiro, director of special programs for Bend-La Pine Schools. In December 2001, there were 67, an 85 percent increase in six years.

By comparison, the district saw a roughly 13 percent increase in student enrollment in that same time period, according to numbers from Fiscal Services Director Brad Henry.

"For a town that I still consider to be small compared to Portland, San Francisco or L.A., I think there is a very large number of children that receive a diagnosis on a continual basis with ASD (autism spectrum disorder)," said Tracy Kennedy, the lead teacher of Stepping Stones School. Kennedy's school is a preschool program offered by the High Desert ESD for children ages 3 to 5 with autism spectrum disorder.

"They're coming here, and we're doing our best to serve them," Craveiro said.

But some parents say the district simply cannot provide the type of one-on-one attention their children need to succeed.

"They don't have enough time. They don't have enough resources to give a kid resources to get him talking," said Jill Sauter, who home-schools her autistic son, Derek.

She decided to take Derek, 14, out of school because she said he needs attention he simply cannot get in the classroom. Derek had trouble speaking and reading. But thanks to the time he and his mom spent doing mouth drills, with Sauter rewarding him with positive reinforcement, she said his skills have greatly improved. He is now an eighth-grader and only goes to High Desert Middle School for physical education class.

If the school district were to integrate Derek into a regular education classroom, his mother said, he would fall too far behind.

"They're doing book reports, he's trying to read," Sauter said. "He's learning how to put letters together to make a word."

But if he were grouped with other students with disabilities, he risks falling even further behind, Sauter said.

"If he was in a room with 10 other kids that had autism, he's not going to succeed in that situation," she said. "He needs to be with peers that can talk and ask questions."

What is autism?

Because of its many forms, autism usually is referred to as a continuum, which is why it is referred to as a spectrum disorder.

Autism spectrum disorders are developmental disabilities that cause major impairments in social interaction and communication, sometimes resulting in unusual behaviors and interests. People with ASDs often learn, think and react differently than other people, according to the Centers for Disease Control and Pre-vention Web site.

For example, during a recent session at home with his private reading tutor, Heather Wingate, Colin worked on phonetics.

Wingate encouraged Colin to make an "ah" sound.

"Ahhhh," Colin responded, tapping his mouth repeatedly with his hand. Wingate then began a grammar lesson.

"Leo and Quincy was a very good boy," Wingate read aloud from a book. "Should we keep the 'was?'"

"I have brown hair!" Colin responded.

Autism rates are going up nationally. The CDC reported in February that about one in every 150, or 6.7 out of 1,000, children has some form of ASD. The agency said it is unclear whether the increase is due to changes in how autism is identified or if there is an actual increase, according to its Web site.

No one knows what causes autism, although some theories blame vaccines, genetics or environmental factors. They tend to occur in people with other medical conditions or in children whose mothers took thalidomide during their pregnancy, according to the CDC.

Under the federal Individuals with Disabilities Education Act, school districts are required to look at a student's needs and provide an education that addresses those needs, Craveiro said.

Teachers, specialists and parents work together to determine a plan for the child's educational goals and how to reach them, known as an individualized education plan.

Colin's is 25 pages long.

For instance, his plan involves having an educational aide who works in his classroom and a speech therapist, provided by the school district, who works with him three times each week.

The goal is to get special needs students into regular education classes as much as possible, Craveiro said.

How Bend-La Pine schools are coping

On behalf of the school districts, the ESD provides autism specialists who work in schools throughout Central Oregon to determine whether students are eligible for special education due to autism, said Paul Andrews, the director of special programs for the High Desert ESD.

Carol Cooley-Reid, an autism specialist and consultant who serves the Bend-La Pine and Redmond school districts for the ESD, said she is so busy traveling between schools that making autism diagnoses is her primary function. Six full-time and two part-time specialists divide seven counties among them.

In the ESD's service area, there were 163 autistic students in 2001. In 2006, there were 227 children with ASD, Andrews said. That's a 39 percent increase in five years.

"We are attempting to get more staff, because of course there's an increase in students," Cooley-Reid said. "All the schools want us there all the time."

Kennedy of Stepping Stones School has a staff of six, including herself, and together they are currently teaching 15 children at her school. Ideally, there would be one teacher per student. Since the program began in 1999, "I have never not ended up full," she said.

While Stepping Stones was designed to serve children one on one, the ESD is required by law to service all children whose parents apply. That means Kennedy must adjust the weekly schedule so that some students come only two days a week and some come only three days a week.

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“I believe that I could service more children if I had additional staff,” Kennedy said. “Right now, my hands are tied to take any more children ... There are basically no resources to hire another staff person should a student arrive on my doorstep who has the diagnosis and would benefit from the strategies that we use.”

Kennedy puts on a fundraiser each year to pay for new equipment to use in her classroom, but in the past two years, the money raised has gone toward hiring an additional staff person, she said. At High Lakes Elementary School, Colin’s teacher, Gaile Pascua, said she has “most definitely” noticed more autistic children over the years. She has worked with his mother to make sure his needs are met every day.

Because Colin cannot specifically articulate what happens at school, Pascua fills out a form that tells his mother how his day went. One day several weeks ago, for example, O’Connor found out that Colin changed his pants because he spilled something on the pair he was wearing.

“Some of my kids were not able to read, so we had to use all pictures, some were not able to talk,” she said. “So I have to find ways to make it work for them. Once I establish a way to teach them, then they got used to that, then it was easier to work with.”

The school district has been getting some increased funds from the state and federal government, but it is not enough to keep pace with the costs of hiring additional staff as well as providing for increases in salaries, health benefits and retirement benefits, Craveiro said.

Bend-La Pine has gotten about $1.9 million more in state funding and $1.3 million more in federal funding to serve special education students since 2001, according to information supplied by Henry, the fiscal services director.

What that means for the school district is that it is unable to add new programs or additional resources to deal with more autistic students, Craveiro said.

“We have to absorb those costs from the general fund,” she said. “That means I’m working harder, we’re all working harder at training our staff on autism, making sure that people understand that disability.”

How families are coping

Colin has the benefit of an educational aide all day long in his classroom, which his mother said happened only after a lot of back and forth with the school district.

Any time she asks for something, she said she must provide substantial proof that it will benefit her son. The O’Connors, Colin’s teachers and the school staff work together to determine how an addition to his education plan will help. Every decision they make is backed by loads of paperwork. O’Connor has file cabinets full of documentation from the school district.

“I never thought I needed an MBA to get my child educated, but you do,” she said with a wry smile.

Craveiro said one-on-one aides are only provided if a child truly needs them.

“I would never want to feel that we were unnecessarily or unwisely distributing resources based on the child’s needs,” she said. “It may not be the Cadillac version, but it is appropriate.”

Still, O’Connor insists that it is only through her frequent and forceful intervention that they have found a structure that works.

“For parents that are not really tenacious, their kids don’t get the services they need,” she said.

In addition to his aide, the school also provides Colin with a speech therapist three times a week to help him with basic socializing. O’Connor purchased the $75 textbook that Colin and his therapist use. And the therapist is unfamiliar with autistic children, she said.

Lynda Albers also has taken her child’s education into her own hands.

Her son, Robert, 15, has Asperger syndrome, a high-functioning form of autism. The disorder is often characterized by difficulty with social interaction, such as reading nonverbal cues, and occasionally an exceptional talent or skill, according to OASIS, or Online Asperger Syndrome Information & Support.

One day at school, a teacher raised her voice at Robert to take off his hat.

He does not respond well to yelling and reacted by screaming a list of obscenities, Lynda Albers said.

“An Asperger kid can function in the real world,” she said. “It’s really (an) embarrassment that’s going to set these kids off.”

Robert’s repeated troubles in school, which his mom blames on a lack of understanding, led to him withdrawing from school earlier this year.

“I worry about parents trusting the school system and not knowing what the laws are and their kids getting in a lot of trouble versus getting the correct services,” Lynda Albers said. “If they’re misidentified, they become problem children. They’re really not problem children, they’re just mis-identified.”

Craveiro, Bend-La Pine’s special programs director, could not discuss the case because she said the school district is bound by confidentiality laws.

Craveiro acknowledged that the district’s budget is tight, but she said they do a good job with what they have.

“It’s hard to add on additional staff and program developments,” she said. “What that means is we need to readjust our priorities, refocus our energies so we’re keeping up with the needs. And we are good at doing that.”

Parents still wish there were more resources accessible to them.

“I think there needs to be more in this community that’s specifically geared toward helping the parents,” O’Connor said. “It’s such a 24/7, 365 disability that impacts the family. If you empower the family to help teach the child, that’s less that the school has to do.”

Albers agreed.

“There’s not a whole lot of support here for parents,” she said.

The challenge of autism

Treatment demands long hours of work for children, parents

By Haley Murray
Thursday, May 3, 2007 10:33 AM CDT

Two-year-old Jace Burgett loves to be tickled. He craves hugs from his mom, Cara Burgett, and he despises sharing with his little brother, Elliot.

So Jace is not that different from any other toddler his age in many ways. How he is different is that he has a full-time job that entails hours of physical and mental activity - a job with inflexible hours and no vacation time.

In between the hugs, tickles and other standard two-year-old activity, Jace receives four hours of speech therapy a week, two hours of occupational therapy a week, and up to 25 hours of applied behavioral analysis therapy per week. Add all that up and this tiny toddler works a full-time job without pay.

But for Jace, this kind of lifestyle is crucial. What may seem rigorous and unnecessary to parents of normally developing children is key to ensuring Jace reaches his full potential.

The extent of his developmental capacity will not be known for several years, but his parents, Cara and Tony Burgett, are making sure he gets there. Such is the complex nature of Autism Spectrum Disorder. Jace was diagnosed with autism six months ago, just before he turned two. Because autism has a wide range of severity, it is unclear whether he will fall on the high-functioning end of the spectrum, the low-functioning end, or somewhere in between.

Only time will tell.

Autism is a complex developmental disability that typically appears during the first three years of life, according to the Autism Society of America, and impacts the normal development of the brain in the areas of social interaction and communication skills.

Although Cara and her husband were devastated by the diagnosis, and even hoped it might be wrong, they proceeded to do the research and follow through with recommended therapies, making their first appointment immediately.

"As much as we wanted to deny it, in our hearts we knew," Cara said from her family's Fairview Heights home. "We took the approach that this is precious time, and we've seen (from research) that early intervention is key."

Evidence shows that early intervention increases dramatically the positive outcomes for young children with autism, the Autism Society reports. Various therapies are recommended, including speech and language, occupational, physical, music, art sensory integration, and dietary interventions, among numerous others.

"Some of these kids go through more work than we do," said occupational therapist Kim David, who works with small children with autism, including Jace. "They are on these intense programs ... it's a whole change of lifestyle for a family."

Cara first noticed that something was amiss with Jace when he began to lose the language he had acquired at about 19 months of age.

"The first thing we noticed was that the word 'please' kept getting distorted to where it was soon just a 'puh'," she said. "He eventually lost all the words together, any word at all, except for 'up.' That was the only word he ever retained."

The lack of social interaction was something Cara only noticed after learning that it was a characteristic of autism. She would often take Jace to the park and observed that he never partook in the games children his age were playing. Instead, he walked the outline of the park or wandered along the fence.

"At the time we wondered what was going on," Cara said. "That didn't ring the autism bell for me."

Although lack of social interaction and the ability to verbally communicate are, in a sense, stereotypical of autism, there is no standard "type" or "typical" person with autism, said Sandra Rodenberg, Educational Services director at the Illinois Center for Autism in Fairview Heights.

"Autism encompasses a large group that go from all the way from individuals with severe or profound mental retardation, to individuals who are normally developing intellectually, but have the social and communication difficulties," said Rodenberg.

The Illinois Center for Autism has 143 students, Rodenberg said, and to say that all 143 students are alike is absolutely not true.

Consequently, working with children with autism poses a unique challenge to the professionals, and parents, who work with them. In addition, there is no real known cause of autism, though there are several theories floating around.

The Autism Society reported that current research ties autism to biological or neurological differences in the brain, and although no genetic link has been identified, there appears to be a pattern of autism or related disabilities in many families who have children with autism.

Autism is not, however, a mental illness, the society stressed, and children with autism are not unruly children who choose not to behave.

"Individuals with autism are not kids who decide just not to behave," Rodenberg reiterated. "These are kids with poor impulse control who become very frustrated when they are unable to communicate their needs."

Adding to their communicative frustration, children with autism also do not process sensory information as a normal child would, David said. As a result, the child will "do something," like hand flapping, rocking or even experiencing a total meltdown, to essentially readjust his nervous system to the environmental stimulant, which can range from the harsh florescent lights of a grocery store or the intense buzzing of an air conditioner.

"I work with kiddos to appropriately integrate and process the sensory information they experience everyday," David said. "It really decreases their ability to function because they are unable to deal with their senses."

Cara said she often feels ostracized when doing what would be considered normal activities for a mother and her young son, like going to the grocery store or running errands.

"One time we were in a store, and he had some real issues with the florescent lights," Cara said. "We ended up having to leave."

Jace has some stereotypical movements, like hand flapping, which can draw some odd looks from passersby, Cara said. It's hard to ignore those stares sometimes, she said.

"You say you don't care, but it still hurts when people stare," she said.

David, who works with five children with autism on a weekly basis, said the remark she hears most often from parents include the need for community awareness and understanding, as they often deal with comments about "controlling their children," she said.

"Don't be so quick to judge," David said. "There is just too much comparison. My heart really goes out to these patients."

Autism is a developmental disorder, but it doesn't have to be a devastating diagnosis, particularly if family, friends and the community rally around the issue and work to create an awareness, professionals said.

"These children are far from unintelligent," said Rodenberg, who has been working with children with autism for 10 years. "They just see the world far differently than we do."

With the recent discovery that autism now affects one in 150 children, as opposed to the previous one in 166, a person with autism is bound to touch a person's life in some manner.

In Illinois, the number of children receiving special education with autism as a primary diagnosis has grown from 1,960 to 9,455 in just 10 years. Whether society wants to acknowledge it or not, experts agree that autism is becoming more prevalent, though it is unclear why.

"Autism knows no social, economic or racial boundaries," Rodenberg said. "If we continue to educate all of the people that touch the lives of these children, I think the future holds great things."