Schafer Autism Report - July 24, 2003

Return to Vaccination News Home Page __» Right-click to "open in new window"

Subscribe to the Vaccination NewsLetter

View past & current Scandals (columns by Sandy Mintz)

The 16-year-old wanted to learn to drive, yearned for more independence. He desperately wanted to make more friends, his mother, Roseanne Smith, said recently.

But clouding the typical teenage desires was Ashton’s autism, which made many of these things difficult. Roseanne Smith said she tried to help her son through some of the problems that plague teens who have Asperger syndrome.

They bitterly fought over the past year, with police responding four times to the Mountlake Terrace apartment they shared. The most recent time, on May 17, about three weeks before the teen disappeared, police said they arrested a juvenile boy at the apartment. They declined to say whether it was Ashton.

Smith conceded her son had been depressed in the past. She said he once attempted suicide. But she insisted he had overcome his depression.

Whether these problems played a role in Ashton’s death is part of a police investigation that began as a runaway case and now is being treated as a homicide.

The Snohomish County Medical Examiner’s Office yesterday confirmed a body found in a wooded lot near his Mountlake Terrace apartment was that of Ashton.

Officials said he died of a single, small-caliber gunshot wound to the head, apparently from a handgun found next to the body.

While the Medical Examiner’s Office has not determined whether Ashton was slain or committed suicide, Lynnwood Police Cmdr. Paul Watkins said police are handling the case as a homicide for the sake of evidence preservation.

“Realistically, it (homicide) is nothing more than a term,” Watkins said yesterday.

Ashton was last seen on the night of June 9 in the cabana area of his apartment complex in the 5400 block of 212th Street Southwest in Mountlake Terrace. Last week, while police were searching for Ashton, his mother discovered that a .22-caliber handgun she kept in a locked safe had been taken from her bedroom.

Police yesterday declined to say whether that was the handgun found near his body. Mountlake Terrace Police Sgt. Craig McCaul said the gun is being tested to see who fired it and whether it belonged to Roseanne Smith.

In trying to determine what happened in the final hours of Ashton’s life, police are examining the teen’s behavior over the past few months as well interviewing his parents.

McCaul said between May 4, 2002, and May 17 of this year, officers responded to four 911 calls made from the Smiths’ apartment. He said all of them were reports of “domestic disputes” between Ashton and his mother.

Questioned after Ashton’s disappearance, his father, Wesley Smith, told police the teen was depressed and possibly suicidal.

But Roseanne Smith, who is divorced from Ashton’s father, said her son had been doing better over the past few months. Unlike many children who have Asperger syndrome, Ashton didn’t take medication, she said, because he didn’t need it.

She recently said they argued, mainly over issues related to Ashton wanting more independence. She attributed the arguments to the growing pains experienced by many teenagers.

Asperger syndrome is a high-functioning form of autism, characterized by regimentation or repetitiveness. Those with the syndrome tend to follow rigid, predictable patterns, according to Geraldine Dawson, a University of Washington psychologist and director of the school’s Autism Center.

She said children who have Asperger syndrome have much better language and cognitive abilities than most children diagnosed with “classic autism.”

Chris Cowles, a clinical psychologist at Children’s Hospital and Regional Medical Center in Seattle, said teens with the syndrome often are depressed because they “are well aware of their disorder or how they are different.”

Helen Powell, who runs the Seattle-based Asperger Support Network, said, “Imagine being different, really quite different, but being intelligent enough to know you are different.”

Powell, whose 17-year-old son has Asperger, said teens with the syndrome often “get teased unmercifully.”

“They don’t have the skills to deal with being teased,” she said. “They are so naive socially. They are the perfect victim.”

Cowles said many teens yearn for independence from their families but want “acceptance and recognition” from their peers.

High-functioning autism. People with this disorder don’t get the joke, or most other interpersonal cues that society takes for granted. They have difficulty with communication and social skills, and can become preoccupied with one narrow subject. But they are typically bright and often excel in math, science and high-tech. Unrecognized and untreated until recently, the disorder is now the focus of research, classes and hope.

The 16-year-old Mountlake Terrace boy couldn’t make friends. The jokes, camaraderie and easy conversation typical of teenagers were beyond his grasp. The social cues that guide most people through the world were as impenetrable to him as a concrete wall.

The problems are typical for people like Smith, who suffer from Asperger syndrome, a neurological malady that dooms many of its victims to a lonely life and dead-end jobs despite higher-than-average intelligence.

In Smith’s case, the condition, a form of autism, may have been a factor in his death earlier this month.

More than five weeks after his mother reported him missing, the boy’s body was discovered in the woods near their apartment. He was shot once in the head by a handgun that lay at his side. (See related story.) Though police haven’t determined whether the death was suicide or homicide, Smith’s parents said he had been depressed and had tried to kill himself once before.

“I hope this will bring to light how isolated these kids are and how misunderstood,” said Helen Powell, who runs the Asperger Support Network in Seattle. “Their world can look pretty bleak.”

Threats of suicide are very common, even among youngsters, said Powell, whose 17-year-old son has Asperger syndrome. “I’ve heard it from 4- and 5-year-olds.”

Until nine years ago, the disorder went unrecognized, and kids who had it were simply labeled “weird.”

“When the diagnosis became official in 1994, schools finally had a place to put that ‘weird’ kid they’d been diagnosing with ADD (attention-deficit disorder) or whatever,” said Mary Meyer, whose daughter has Asperger and who heads the adult chapter of the Asperger Syndrome Education Network in Northern New Jersey, where she lives.

An estimated one out of every 1,000 people suffers from the syndrome, named for the Austrian pediatrician who first described it in 1944. Much progress has been made in identifying children with the disorder, but there remain thousands of adults who were never correctly diagnosed.

Meyer’s 28-year-old daughter, Susan, saw psychiatrists from the age of 5 but was only given a name for her problem when she was in college. By that time, the young woman was seriously depressed.

Every week now, Susan Meyer attends a social-skills group at West Bergen Mental Healthcare in Ridgewood, N.J.

Karen Roe started the Seattle Asperger Syndrome Education and Support Group five years ago after struggling with the condition herself and watching her son, now 11, face the same social awkwardness that set her apart from others.

Roe, who became a counselor specializing in Asperger, offers an intensive training program called “The Gift of Gab” to help teens and adults learn how to converse more easily and read other people’s body language and moods.

People with Asperger are often particularly competent in high-tech fields. In 2001, Wired magazine ran an article suggesting that the couplings of technologically brilliant but socially inept people may be to blame for huge increases in the number of children with Asperger syndrome and autism in areas such as California’s Silicon Valley.

Roe says her training program is particularly useful for people who hold jobs at Boeing, Microsoft and other Northwest technology companies.

“They can often get the job,” she said, “but it’s hard for them to hold it because of their difficulty with communication and social skills.”

Movies with no sound Dr. Jeanne Marron, clinical director for Asperger services at West Bergen, said the above-average intelligence of most of her clients makes it possible to teach them how to read and react to social cues, an instinctive skill they lack.

For example, she shows them movies with the sound turned down, guiding them to examine the changes in people’s expressions during emotional scenes. “One study showed that people in the (Asperger) spectrum only focused on the mouth, whereas most people scan the eyes and the entire face,” Marron said. “We get them to do this.”

Susan Meyer said this training has helped her “become better at dealing with people who are angry or have different opinions than I do.”

Researchers at the University of Washington’s Autism Center are investigating whether it’s possible to “switch on” brain regions involved in recognizing faces and reading expressions, which generally show very little activity in people with Asperger. In the project, which is just getting started, children are repeatedly shown photographs and coached on what to look for, said center director Geraldine Dawson, co-author of “A Parent’s Guide to Asperger Syndrome and High-Functioning Autism.” Later, their brains will be scanned again to see if activity levels have increased.

Thus far, genetic research has revealed no medical answer to the disorder, although MRI scans show significant differences in nerve-cell connections in the brains of people with Asperger syndrome.

In the meantime, “education and support are the interventions of choice,” said Peter Gerhardt, executive director of Nassau/Suffolk Services for Autism in New Jersey. “With adults, it runs the gamut from how to get a job to how to avoid being a victim of sexual abuse.”

Without an ability to understand subtleties in conversation and body language, it’s easy to get taken advantage of, emotionally and physically.

Gerhardt was formerly at Rutgers’ Douglass College, where he formed a social-skills group that Susan Meyer attended. He dubbed the group “Aspies With an Attitude.”

Bestowing this nickname, said Mary Meyer, “was an incredibly important way to help them form an identity, a sense of belonging and self-esteem — even though it’s a strange kind of belonging.”

Gerhardt said his mission is to raise awareness about his patients. “I present their stories at autism conferences, to get the message out about who they are, and that they are interesting and should be valued,” he said.

Dawson, who directs the UW’s center, said she also emphasizes the positive qualities of Asperger syndrome in her book. Many “Aspies” possess an amazing capacity for visualization that makes them well-suited to engineering, architecture and art. And their ability to memorize staggering amounts of information is a skill many envy.

“Instead of just focusing on the challenges, we’re just as interested in the unique traits and capabilities,” Dawson said.

A virtual birthday party An online program called KidTalk developed by the University of Washington and Microsoft aims to relieve the isolation of youngsters with Asperger by offering a nonthreatening environment where they can converse by computer. The program presents social situations, such as a birthday party, then guides kids through the intricacies of the social interactions through a chat-room format. A trained therapist “listens in,” offering private tips and comments to help children interact more smoothly.

“It can be easier for kids with Asperger to have more intimate and deep relationships by computer, when they’re not overwhelmed by face-to-face interaction,” Dawson said.

“James,” 46, lives with his widowed father and cannot hold a job despite his genius IQ. He spends his days in front of the TV and the computer, reading Old English literature and leaving the house only for martial-arts classes. His father, “Dave,” worries that when he dies, James will have nowhere to go and no means of support.

“He can take care of himself, and he can drive, but he doesn’t have economic self-sufficiency and can’t plan ahead,” Dave said.

With Marron’s help, James has been learning how to prepare for job interviews. Some Aspies also need her help making sure they have a working atmosphere free of loud noises or flashing lights. “I think for our higher-functioning people, there is hope of getting a meaningful job,” Marron said.

Susan Meyer longed to become a teacher, but she fears that’s not possible. Instead, after several unfulfilling part-time jobs, this college graduate is looking into training as a locksmith.

Marron said the health-care center is seeking funding for a residential program where staff members would check in regularly, monitoring the budgeting and housekeeping tasks that often prove difficult for people with Asperger.

“My long-range goal is to help every one of these Aspies have as productive a life as possible,” said Mary Meyer. “So many of them could make such a wonderful contribution to society.”

This story was written by Abigail Leichman of The Record (Bergen County, N.J.) with Washington state information contributed by Seattle Times staff reporter Sandi Doughton.

• Marked impairment in the use of multiple nonverbal behaviors such as eye gaze, facial expression, body posture and gestures to regulate social interaction.

• Impaired speech and language skills in volume, intonation, inflection and rhythm; may exhibit “professorial” speaking style.

treatment: depts.washington.edu/uwautism/, or phone: 206-221-6806; e-mail: leenk@u.washington.edu

• Information on KidTalk, an online program developed by the University of Washington and Microsoft for youngsters with Asperger is available at the UW address above.

• The Web site Asperger Northwest lists support groups and programs: aspergersnw.tripod.com

• The Seattle Asperger Syndrome Education and Support Group meets monthly. For more information or details on “Gift of Gab” classes to help teens and adults learn to converse, read moods and body language, contact Karen Roe, 206-782-2232 or fishmama@qwest.net

• The Seattle Asperger Parent Support Group holds meetings and publishes a newsletter. Contact the group at: seattleaspergers@yahoo.com.

• Information about a national organization, the Asperger Syndrome Coalition of the United States, can be found at: www.asperger.org.

“A Parent’s Guide to Asperger Syndrome and High-Functioning Autism” by Sally Ozonoff and Geraldine Dawson (Guilford Press).

“Asperger Syndrome, the Universe and Everything” by Kenneth Hall (Jessica Kingsley Publishers).

“Asperger Syndrome & Your Child: A Parent’s Guide” by Dr. Michael D. Powers (HarperResource).

“Eating an Artichoke: A Mother’s Perspective on Asperger Syndrome” by Echo R. Fling and Tony Attwood (Jessica Kingsley).

“Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World” by Dr. Teresa Bolick (Fair Winds).

“Asperger Syndrome and Adolescence: Practical Solutions for School Success” by Brenda Smith Myles and Diane Adreon (Autism Asperger Publishing Co.).

“Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence” by Luke Jackson and Tony Attwood (Jessica Kingsley).

“Finding Ben: A Mother’s Journey Through the Maze of Asperger” by Barbara LaSalle (McGraw-Hill)

Francesca Rankin can still see glimmers of her brilliant boy beneath the autism that’s coiled around his mind.

Her son Josh, 17, can recite phrases from a vocabulary that spans at least six languages. If he’s ever learned your birthday, he can tell it to you from memory. He can recite Edward Lear’s ‘The Owl and the Pussycat,’ a 33-line British poem, start to finish, and with a rhythm as smooth and clipped as, say, actor Joaquin Phoenix, to whom Josh bears a striking physical resemblance.

But ask Josh the name of the poem, and he probably can’t understand why you’d want to know. Try to hold a conversation in Japanese or French or even English and he won’t get past a couple of sentences.

Autism is a complex developmental disability that affects cognitive functions, including an individual’s ability to socialize, communicate and concentrate. Until the onset of the condition, at age 2, Josh was considered perfectly healthy and gifted, his mother said.

He’s made tremendous strides in the past few years, she said, but he still requires extra attention that she cannot always give him.

Josh is a participant in a new summer program called Strive, designed for students too old to attend other programs for youth with developmental disabilities. Those administering the new program say they’re bridging a gap in special education on Hilton Head Island. Because many of the area’s developmentally disabled children are ready to leave the public school system, they have found themselves without the summer programs that keep their skills from deteriorating.

Nineteen children with childhood autism and 8 with Asperger’s syndrome aged 2-8 year, were treated with cerebrolysin (CL) in inpatient clinic. All the patients received 10 microinjections (intramuscularly and perinervously) of 0.1 ml CL daily during 5 days. Clinical study was combined with device estimation of cognitive functions and communicative skills. CL therapy resulted in improvement of cognitive functions (expressive and receptive speech, fine motoring, playing). Positive effects were revealed in all the patients with Asperger’s syndrome and in 89% of the patients with childhood autism. Any negative effects were not found.

With regard to cognitive functions development, therapeutic efficacy proved to be more pronounced in the patients with Asperger’s syndrome as compared to childhood autistic group (p < 0.005).

Hundreds of thousands of children prescribed the drug Ritalin for hyperactivity might simply be the victims of lax parenting, new evidence suggests.

A British scientist has cast doubt on the existence of conditions such as attention deficit disorder (ADD), which will fuel the controversy over the increasing use of Ritalin.

Warwick Dyer, a behavioural expert, claims parents need to accept more blame for their children’s “disorders” and move away from the chemical cosh of prescription drugs.

He has developed a programme that focuses on the way parents behave towards their children - and claims a 100 per cent success rate over the past five years. Remarkably, he never sees the child involved, and has just one face-to-face consultation with the parents. The rest of his work is limited to a daily telephone briefing with the parents on how to treat their child.

Mr Dyer’s theory is based on simple ideas such as a rigid system of rewards and sanctions for good and bad behaviour, with an insistence on politeness towards parents - and a demand that mothers and fathers control their tempers as well.

Mr Dyer said: “I am open-minded about whether ADD exists or not, but what is certainly clear is that a lot of symptoms ascribed to such disorders are in fact easily confused with basic behavioural problems that don’t need to be treated with a drug.

“Parenting is not a democracy. You need to give your child what they want - love and attention - but on your terms, not theirs.”

Mr Dyer’s work is now the subject of a Channel 4 Cutting Edge documentary, to be broadcast tomorrow.

One in 10 children is now diagnosed with ADD or the related attention deficit hyperactivity disorder (ADHD).

Ritalin is an amphetamine with a similar potency to cocaine, and prescribing in Britain has soared one hundredfold in the past 10 years. In 1990, just 3,000 children were on the drug; today, there are 345,000 taking it, costing the NHS more than £3m a year. The drug is being given to children as young as 18 months old.

Now a growing lobby of parents, doctors and other experts is questioning whether ADD or ADHD exist.

Mr Dyer was a primary school teacher in the East End of London until he retired and set up the Behaviour Change Consultancy. He now sees about 30 families a year, and claims his techniques work with everyone, from the youngest children to teenagers.

He said: “The problem is that a lot of parents simply aren’t being parents. In the last 20 years, parents have started talking to their children a lot more, but they have stopped being in control of them.

“They have tended to examine how they were brought up and reject what they thought was bad, but they haven’t taken on what was good. Children are instinctively artful and will try to put themselves in control of their parents. I put parents back in control.”

His “back to basics” approach worked to stunning effect with Fred and Diane from Essex, and their seven-year-old daughter, Georgina, who are featured in the Cutting Edge documentary. Georgina had been prescribed Ritalin and been diagnosed with special needs because of her appalling temper tantrums and violent behaviour. She was expelled from her first playgroup at the age of two and a half, and her parents were so desperate that last year they had decided to put her into care.

But within weeks of adopting Mr Dyer’s techniques, Georgina’s behaviour had improved.

Fred, who runs a wedding video business, and Diane, a civil servant, had to spend seven months in daily phone calls to Mr Dyer, where they had to describe her behaviour in detail, and accept castigations from the expert when they deviated from the sanction system.

At one point he told the couple: “It’s not her fault that you can’t control her. She has wrapped you around her little finger. You aren’t accepting that there isn’t anything wrong with your daughter.”

By the end of the seven months, Georgina was having less than two tantrums a month and while her special needs diagnosis was being reviewed.

Diane said: “The change has been incredible. This has all been done without Ritalin. Before, I hated her. Now, she is a normal child. I feel guilty when I look back to how I treated her before.”

said: “Warwick Dyer has shown that the idea of ADHD is a myth. Children are being given a drug that has the same pharmacology as cocaine when in fact all they and their parents need are help with their behaviour.

“Doctors should stop dishing out Ritalin and start using safe alternatives, which have been proven to work.”

The case centres on whether the girls should have the MMR vaccine Two women who were ordered by the courts to have their children vaccinated with the controversial MMR jab could appeal against the decision. They will make an application to appeal at the Royal Courts of Justice later on Thursday.

The High Court ruled in June that two young girls should be given the three-in-one jab against the wishes of their mothers.

In a landmark ruling, Mr Justice Sumner found in favour of the children’s fathers, who want the girls to receive the vaccine.

He also ruled that the girls, who are aged four and 10, should be immunised against other diseases, including diphtheria, tetanus, whooping cough, polio, and meningitis.

It is understood that in both of these cases the mothers are against their daughters being given the three-in-one vaccine because of concerns over its safety.

Studies have suggested the jab may be linked to autism and bowel disease. However, these claims have been dismissed by doctors and the government, who all insist it is safe.

Mother of one of the girls Mr Justice Sumner ruled that it was in the girls’ best interests to be given the three-in-one jab.

He rejected the idea of giving the girls separate vaccinations against mumps, measles or rubella, saying that the gap between jabs could put them at risk of getting these diseases.

Both girls in this case live alone with their mothers. Their parents are either divorced or separated.

Mr Justice Sumner said his decision was influenced by evidence given by medical experts.

The ruling sparked controversy not least because it could have implications for many parents in similar situations across the country.

One of the mother’s issued a statement after last month’s High Court ruling criticising the decision.

She said: “It’s outrageous that, in a free society, a judge could make such a decision.”

The British Medical Association has backed the High Court ruling. However, it has been criticised by anti-MMR campaigners, including JABS.

[This open letter to the President comes from Christina Adams, MFA, who has written about autism for the Los Angeles Times, the Los Angeles Times Magazine, and NPR.]

The Schafer Autism Report recently reported that you had no time to deal with autism. I understand, because once I had no time to deal with it either. I was busy with my new second career. You see, I once worked for people you know in my first career, before I started and lost a second career to autism. I worked in the Pentagon, helping keep the Army’s weapon system’s program strong, then edited the Pentagon’s newspaper, which you might have seen lying around the building. Then I worked in the Wisconsin State Legislature, for a Republican leader, and often coordinated work with then-governor, now US health secretary, Tommy Thompson. After that I worked very hard in Los Angeles promoting the B-2 Bomber programs and others at Northrop Grumman, for a time working for your own Army secretary James Roach.

Then autism struck my son. My husband and I dropped everything, hired a lawyer, spent thousands of dollars to fund round-the-clock interventions, learned about special diets, medicines, special ed, and therapies of all stripes. I became unable to leave my home, since someone has to be present when 40 hours per week of in-home therapy is taking place. I can’t convey the agony, the economic loss, the fear my husband and I experienced. But we are among the fortunate. Due to the money spent on my son and his own innate talents, he has passed two kindergarten screening tests undetected, and doctors who do not know his history think his prior diagnosis of autism was a mistake. I can assure you that the child who went from head-banging, biting and social isolation is now a loving, gifted child with great speech and intelligence, and friends. Yes, he has friends. A miracle.

So it looks as if future presidents won’t have to spend 3 million dollars over my son’s lifetime to institutionalize him.

No one has time for autism. But autism is slowly devouring this country’s economic future, pitting the needs of well children against special ed kids. There are ten kids in my neighborhood with autism now, Mr. President. How can that be? Won’t you please help us find out?

By the way, in the early days of my son’s diagnosis, I went to see Congressman Christopher Cox. I explained about autism to him in the 2 minutes he could give me, and asked him to respond to me. I came home to find out that my 3-year-old son had run away. Kids with autism often do this. A helicopter was launched, a SWAT team came to my door to ask for a photo of him, and neighbors searched the area for my child. After 45 of the most surreal moments of my life, a neighbor found him, far down the street. Fortunately, all these people had time to help me find my son.

Return to Vaccination News Home Page __» Right-click to "open in new window"

DISCLAIMER: All information, data, and material contained, presented, or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of the publisher, and is not to be construed or intended as providing medical or legal advice. The decision whether or not to vaccinate is an important and complex issue and should be made by you, and you alone, in consultation with your health care provider.