SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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July 25, 2002 CALENDAR LISTING: EVENTS@doitnow.com

RESEARCH

* Support Groups Found Key to Parental Acceptance of Autism Diagnosis

* Autism, Asperger and Mental States and Animated Shapes

* Effects of Age On Brain Volume And Head Circumference In Autism

* Brain Structural Abnormalities In Young Kids With ASD.

* Secretin Treatment For Autistic Disorder: A Critical Analysis

* Dyslexics May Miss Rhythm of Sounds, Language

* Rocket Scientist who Couldn't Tie Shoes: Helping Kids with Mild Autism

AWARENESS

* Disability Rights Awareness At All-Time High, Says Advocacy Group

RESEARCH

Support Groups Found Key to Parental Acceptance of Autism Diagnosis 'Disclosure of a diagnosis of childhood autism and parents' acceptance of the disability'

2134686&dopt=Abstract <- - address ends here

[Article in Japanese]

Futagi Y, Yamamoto Y.

Department of Social Welfare, Faculty of Sociology, Bukkyo University, Kyoto.

Mothers of 14 children (10 boys, 4 girls) with childhood autism answered the self-report questionnaire regarding the disclosure of a diagnosis of autism and their acceptance of the disability.

The children's mean age at the study was 8.6 years, and their ages at the time of the disclosure and acceptance were 4.0 and 5.2 years, respectively.

The age at acceptance exhibited a statistically significant positive correlation with the age of disclosure indicating that early disclosure was related to early acceptance.

The results obtained in the questionnaire suggested that the increased understanding of autistic behavior, the accumulated experience as to how to communicate with their own child and the existence of a self-care group to support the parents were important factors for the acceptance of the disability.

The significance of the professionals' sympathetic manner at the time of disclosure, full explanation of the disability, instruction as to how to cope the disability and providing the information on social resources available in the local district was also discussed in relation to the acceptance of the disability.

PMID: 12134686 [PubMed - in process]

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Autism, Asperger and Mental States and Animated Shapes

'Autism, Asperger syndrome and brain mechanisms for the attribution of mental states to animated shapes'

2135974&dopt=Abstract <- - address ends here.

Castelli F, Frith C, Happe F, Frith U.

Institute of Cognitive Neuroscience, Wellcome Department of Cognitive Neurology, Institute of Neurology, University College London and Institute of Psychiatry, Kings College London, London, UK.

Ten able adults with autism or Asperger syndrome and 10 normal volunteers were PET scanned while watching animated sequences.

The animations depicted two triangles moving about on a screen in three different conditions: moving randomly, moving in a goal-directed fashion (chasing, fighting), and moving interactively with implied intentions (coaxing, tricking).

The last condition frequently elicited descriptions in terms of mental states that viewers attributed to the triangles (mentalizing).

The autism group gave fewer and less accurate descriptions of these latter animations, but equally accurate descriptions of the other animations compared with controls.

While viewing animations that elicited mentalizing, in contrast to randomly moving shapes, the normal group showed increased activation in a previously identified mentalizing network (medial prefrontal cortex, superior temporal sulcus at the temporo-parietal junction and temporal poles).

The autism group showed less activation than the normal group in all these regions. However, one additional region, extrastriate cortex, which was highly active when watching animations that elicited mentalizing, showed the same amount of increased activation in both groups.

In the autism group this extrastriate region showed reduced functional connectivity with the superior temporal sulcus at the temporo-parietal junction, an area associated with the processing of biological motion as well as with mentalizing.

This finding suggests a physiological cause for the mentalizing dysfunction in autism: a bottleneck in the interaction between higher order and lower order perceptual processes.

PMID: 12135974 [PubMed - in process]

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Effects of Age On Brain Volume And Head Circumference In Autism.

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2136053&dopt=Abstract <- - address ends here

Aylward EH, Minshew NJ, Field K, Sparks BF, Singh N.

Department of Radiology (Dr. Aylward, K. Field, B. Sparks, and N. Singh), University of Washington School of Medicine, Seattle.

OBJECTIVE: To determine whether brain volume, as assessed on MRI scans, differs between individuals with autism and control subjects, and whether such differences are affected by age.

BACKGROUND: Previous studies have found increased brain weight, head circumference, and MRI brain volume in children with autism.

However, studies of brain size in adults with autism have yielded conflicting results.

The authors hypothesize that enlargement of the brain may be a feature of brain development during early childhood in autism that normalizes with maturational processes.

METHODS: The authors measured total brain volumes from 1.5-mm coronal MRI scans in 67 non-mentally retarded children and adults with autism and 83 healthy community volunteers, ranging in age from 8 to 46 years.

Head circumference was also measured.

Groups did not differ on age, sex, verbal IQ, or socioeconomic status.

RESULTS: Brain volumes were significantly larger for children with autism 12 years old and younger compared with normally developing children, when controlling for height.

Brain volumes for individuals older than age 12 did not differ between the autism and control groups.

Head circumference was increased in both younger and older groups of subjects with autism, suggesting that those subjects older than age 12 had increased brain volumes as children.

CONCLUSIONS: Brain development in autism follows an abnormal pattern, with accelerated growth in early life that results in brain enlargement in childhood.

Brain volume in adolescents and adults with autism is, however, normal, and appears to be due to a slight decrease in brain volume for these individuals at the same time that normal children are experiencing a slight increase.

PMID: 12136053 [PubMed - in process]

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Brain Structural Abnormalities In Young Kids With Autism Spectrum D.

2136055&dopt=Abstract <- - address ends here.

Sparks BF, Friedman SD, Shaw DW, Aylward EH, Echelard D, Artru AA, Maravilla KR, Giedd JN, Munson J, Dawson G, Dager SR. Department of Radiology (B.F. Sparks, D. Echelard, and Drs. Friedman, Shaw, Aylward, Maravilla, and Dager), Anesthesiology (Dr. Artru), Center for Human Development and Disability (Drs. Munson, Dawson, and Dager), Psychiatry and Behavioral Sciences (Dr. Dager), and Bioengineering (Dr. Dager), University of Washington School of Medicine, Seattle, WA.

OBJECTIVE: To explore the specific gross neuroanatomic substrates of this brain developmental disorder, the authors examine brain morphometric features in a large sample of carefully diagnosed 3- to 4-year-old children with autism spectrum disorder (ASD) compared with age-matched control groups of typically developing (TD) children and developmentally delayed (DD) children.

METHODS: Volumes of the cerebrum, cerebellum, amygdala, and hippocampus were measured from three-dimensional coronal MR images acquired from 45 children with ASD, 26 TD children, and 14 DD children.

The volumes were analyzed with respect to age, sex, volume of the cerebrum, and clinical status.

RESULTS: Children with ASD were found to have significantly increased cerebral volumes compared with TD and DD children.

Cerebellar volume for the ASD group was increased in comparison with the TD group, but this increase was proportional to overall increases in cerebral volume.

The DD group had smaller cerebellar volumes compared with both of the other groups.

Measurements of amygdalae and hippocampi in this group of young children with ASD revealed enlargement bilaterally that was proportional to overall increases in total cerebral volume.

There were similar findings of cerebral enlargement for both girls and boys with ASD.

For subregion analyses, structural abnormalities were observed primarily in boys, although this may reflect low statistical power issues because of the small sample (seven girls with ASD) studied.

Among the ASD group, structural findings were independent of nonverbal IQ.

In a subgroup of children with ASD with strictly defined autism, amygdalar enlargement was in excess of increased cerebral volume.

CONCLUSIONS: These structural findings suggest abnormal brain developmental processes early in the clinical course of autism. Research currently is underway to better elucidate mechanisms underlying these structural abnormalities and their longitudinal progression.

PMID: 12136055 [PubMed - as supplied by publisher]

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Secretin Treatment For Autistic Disorder: A Critical Analysis.

ds=12126223&dopt=Abstract <- - address ends here

Patel NC, Yeh JY, Shepherd MD, Crismon ML.

College of Pharmacy, The University of Texas at Austin, Austin State Hospital, Texas Department of Mental Health and Retardation, 78712, USA.

We assessed evidence of the effects of secretin on behavior in individuals with autistic disorder.

Articles were obtained through a MEDLINE search of the English-language literature from January 1966-November 2001; all investigations and case reports on the topic were included.

Press releases obtained from the World Wide Web also were included.

Secretin, a gastrointestinal hormone, is suggested to improve autistic symptoms, particularly social function and communication.

Two formulations, porcine and synthetic human secretin, were evaluated in humans.

A small body of literature and popular belief in autistic disorder communities supported the agent's efficacy.

A number of controlled clinical trials did not show improvement in autistic symptoms with secretin compared with placebo, possibly indicating no role for the drug in autistic disorder.

PMID: 12126223 [PubMed - in process]

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Dyslexics May Miss Rhythm of Sounds, Language

Reuters Health - In a finding that challenges conventional thinking about dyslexia, the results of a new study raise the possibility that the learning disorder is caused by difficulties in perceiving the rhythm in sounds.

Assuming that future research confirms that this problem plays a major role in causing dyslexia, it may be possible to develop tests to identify young children who are likely to develop the learning disorder, the study's lead author, Dr. Usha Goswami of University College London, UK, told Reuters Health.

People with dyslexia, despite normal intelligence and vision, have difficulty reading, writing and spelling. The exact cause is uncertain, although a person's genes are thought to play a role.

"We have known for a long time that dyslexic children have subtle spoken language problems," Goswami said. For instance, dyslexic children have a hard time with rhyming exercises and may mix up the first letters of words, changing Bob Dylan to Dob Bylan, she explained.

Researchers know that these and other difficulties predict how well a child will learn to read and spell across a variety of languages, Goswami said, but "what we haven't been able to find is the perceptual problem underlying these difficulties."

Previous studies have shown that even before children start school, their ability to "segment" syllables at the vowel--such as "sw-eet" and "str-eet"--predicts their ability to learn to read and write, even in languages that do not use an alphabet, such as Chinese.

In the new study, Goswami and her colleagues used a test that measures the ability to perceive rhythms in non-speech sounds. They compared dyslexic children with a group of children the same age who did not have reading problems. The researchers also tested a group of children who learned to read at an early age and compared them with same-aged children who had not yet learned to read.

Compared with children who did not have reading problems, dyslexic kids were less sensitive to rhythms in sound, the authors report in the advance online edition of the journal Proceedings of the National Academy of Sciences. And kids who started to read early were better at picking up rhythms in sounds than children who had not yet learned to read.

Past research has focused on the troubles dyslexic children have in breaking down words into segments or "phonemes" as they learn to read. But since the new study found that dyslexic children had difficulties hearing the rhythm in sounds that were not words, the findings suggest that dyslexia may involve a more basic problem with perceiving sounds than previously thought, according to Goswami.

In children with dyslexia, "something is wrong with the perceptual mechanisms underpinning language acquisition long before reading is taught," she explained. "However, there is no simple test available to diagnose this."

If the key problem behind dyslexia turns out to be difficulty perceiving the rhythm in sounds, it may be possible to develop a test that could identify children at risk for dyslexia, Goswami said. Since children's language abilities are still forming until about age 8, such a test "would enable very early language-based intervention that could potentially be very powerful," the UK researcher said.

Goswami and her colleagues are now working to reproduce the study in 10 other countries. She said that if a problem with perceiving rhythms is indeed the basic deficit of dyslexia, then it should be related to reading and spelling abilities in other languages, at least in those that have consonant-vowel syllable structures.

SOURCE: Proceedings of the National Academy of Sciences 2002;10.1073/pnas.162368599.

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The Rocket Scientist who Couldn't Tie Shoes: Helping Kids with Mild Autism Departing Utah Psychologist Writes Book for Parents and Teachers

[One of the authors, Sally Ozonoff, is now at the MIND Institute in Sacramento, California. This release was sent out by the University of Utah where she was before MIND.]

As the number of children diagnosed with autism skyrockets, departing University of Utah psychologist Sally Ozonoff is publishing a new book filled with advice for parents of children with mild forms of the disorder, which impairs social relationships and communication.

"A Parent's Guide to Asperger Syndrome & High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive," published by Guilford Publications, is due in bookstores in July. It was written by Ozonoff and psychologists Geraldine Dawson and James McPartland at the University of Washington.

"The book never would have been written without the lovely people of Utah who opened their families and lives to me," says Ozonoff, who studied or treated 200 to 300 children with "autism spectrum disorder" - which includes classic to mild forms of autism - as co-director of the University of Utah's Autism Specialty Clinic and Autism Research Project.

The publisher says: "This hopeful, compassionate guide shows parents how to work with their children's unique impairments and capabilities to help them learn to engage more fully with the world and live as self-sufficiently as possible.

The book is packed with practical ideas for helping children relate more comfortably to peers, learn the rules of appropriate behavior, and participate more fully in school and family life. It also explains what scientists currently know about autistic spectrum disorders and how they are diagnosed and treated."

An associate professor of psychology, Ozonoff formally leaves the University of Utah faculty on July 1 after 11 years. She already is working at her new job as associate professor of psychiatry at a larger autism center at the University of California, Davis, Medical Center.

The classic definition of autism includes "children who have very low interest in relating to other people," Ozonoff says. "They don't seem to have any desire to engage in social interactions. They usually have significant language limitations. Some don't speak at all and some just repeat others' speech. They are clearly very delayed in their language. They usually have any number of a variety of repetitive behaviors, things they do over and over again. It could be flapping their hands, or rocking or spinning. Š To have classic autism, you have to show a certain number of features in each of three areas: social impairment, communication impairment and repetitive behaviors."

However, researchers have realized in recent decades that classic autism is just the severe end of a spectrum of disorders that also include milder conditions in which affected children and adults may be intelligent, communicative, articulate and able to learn, but still have some social and communications impairments and other autism-like symptoms.

The milder conditions are known as Asperger syndrome, high-functioning autism and "pervasive developmental disability - not otherwise specified." Ozonoff's book makes clear that while researchers and clinicians have tried to distinguish these three conditions, they are similar and indeed may represent one condition that is simply a mild form of autism.

"These higher-functioning versions of autism still involve the same areas [of impairment], but of a different quality," Ozonoff says. "In the social area, they might not be completely aloof or uninterested in interacting, but may be quite odd in how they try to interact with others. In the communication area, they may not have any delays in language but they usually have some differences or oddities in their communication style. For example, they might talk too much instead of too little, or their speech might not be really reciprocal, like it's not related to what other people say. You make a comment and the child answers back according to what they want to say instead of what you asked."

Children and adults with mild autism also may not have repetitive behaviors, but instead display almost obsessive interest in certain narrow or unusual topics.

"Some kids are interested in movie ratings or animal classifications or sprinkler systems," says Ozonoff, who had one patient able to identify numerous vacuum-cleaner parts.

Other symptoms that may be seen in children with mild autism include extreme anxiety over changes in routine, unstable mood, poor motor skills, an ability to get along with adults better than with children, poor common sense, trouble making eye contact, difficulty detecting nonverbal cues from other people, a lack of empathy or social or emotional reciprocity, echoing lines from videos or books, and an inability to engage in pretend play.

Many children with autism spectrum disorder also suffer frequent teasing because they have interests unlike other children or otherwise do not fit in, Ozonoff says.

A study in the late 1980s estimated autism affected 1-in-1,000 children - and that estimate was criticized as high, Ozonoff says. But a definitive study published in 2001 estimated 1-in-160 children had some form of autism, with about one-fourth of those having classic autism and the rest affected by milder forms.

"We used to think it was such a rare disorder it wasn't included in Psych 101 or even in most graduate training programs," Ozonoff says. "Now it's turning out to be one of the most common developmental disorders. Most people already know someone with an autism spectrum disorder, whether they realize it or notŠ or they will one day. So I think everyone needs to know a little about it."

Ozonoff says the reason for the increase is not known, although better diagnosis and environmental factors are possible. (However, a series of recent studies found no evidence to support claims that the vaccine for mumps, measles and rubella might be linked to autism.)

Classic autism first was described in 1943 and Asperger syndrome in 1944, yet the mild forms of autism have been widely recognized among psychologists and psychiatrists only for the past two decades. So there is no good data on how children treated for high-functioning autism do when they grow up.

"The range is from pretty limited: having to have sheltered employment, residential living and significant support the rest of their lives; to pretty independent: going to college, living in a dorm, leaving school and holding down a fairly competitive job; but even those who do best usually struggle to fit in," Ozonoff says.

The new book begins with a chapter defining the various forms of autism, followed by a chapter on how parents should have their children diagnosed, and another on possible causes, including inherited factors and variations in brain structure.

A chapter on treatments makes clear there is no direct treatment for autism - mild or otherwise. But there are many possible therapies - behavioral, social, language, psychotherapy, medication and others - than can help children with mild autism overcome or work around their impairments and have fuller lives. Medication, for example, can alleviate the anxiety often experienced by children with high-functioning autism.

The book's remaining chapters provide specific, detailed advice for parents, teachers and others on how to help high-functioning autistic children at home, school, social situations and, eventually, as adults. One example include providing these visually oriented children with written schedules that include pictures and words describing chores and homework

"It's important to work with your school to set up an appropriate program for your child," Ozonoff says. "There's no cookie-cutter model. You have to figure out what are your child's particular needs to live as independently as possible - to get a job and handle practical matters like money, time, independent living skills, grooming and getting along with others." Parents of kids with mild autism also should provide structured social opportunities so the children learn better how to deal with social interactions.

"You can't just throw them into Scouts," says Ozonoff. Instead, provide advice to the group's leader on how to help the child get along - for example, by giving the leader a small stop sign to display when the child talks too much or by pairing the child with a buddy instead of simply hoping he or she will make friends.

One chapter outlines what Ozonoff says is a key principle, which is to channel some of the unusual characteristics of children with mild autism so they become strengths. Those characteristics include remarkable memory, often-superior academic skills, a tendency to think in visual terms, a preference for following set rules or routines, strong passion and conviction, and greater comfort with adults than with other children.

For example, a child with mild autism may have trouble making conversation with peers. Parents can use the child's memory skills by filling out index cards with details about the child's friends: where they live, their likes and dislikes, and sibling's names. The child can memorize the information, and then use it as a way to ease conversation with peers.

"Learn your child's strengths and be creative in learning how to make them work for him," Ozonoff says. "Remember this is a neurological disorder. Don't take misbehavior personally. And have a sense of humor. They are great kids and really fun and fascinatingŠ when they're not being really hard to deal with. They have a tremendous amount to offer."

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AWARENESS

Disability Rights Awareness At All-Time High, Says Advocacy Group

U.S. Newswire - National awareness of the Americans with Disabilities Act (ADA) is at an all-time high, and support for the landmark civil rights law for people with disabilities remains phenomenally strong as the nation prepares to mark the 12th anniversary of the Act's signing this Friday, July 26. On Capitol Hill today, the National Organization on Disability (N.O.D.) released results of a recent Harris Poll study showing 77 percent of Americans say they are aware of the law, a notable increase from the 67 percent recorded in 1999. Of those who know of the ADA, an overwhelming 93 percent "approve of and support" it. Respondents with disabilities have a slightly higher awareness of the ADA than the general population, at 81 percent, and support it equally.

"This growing awareness of and consistent and long-term support for the ADA are welcome news for the 54 million Americans, roughly one in five, who have disabilities," said N.O.D. Board Chairman Michael R. Deland. "The challenge is now is to increase the participation and contribution of this huge and valuable segment of our society in all aspects of life."

Harris Poll Chairman Humphrey Taylor noted, "Whereas Americans can be ambivalent about special legal protections for some minorities, they are overwhelmingly supportive of protecting the rights of Americans with disabilities."

These are the results from a Harris Poll/N.O.D. survey conducted online between June 20-26, 2002 among 2,050 adults who are age 18 or older, using the same methodology used to forecast the 2000 presidential election with great accuracy. Within this total sample, 481 respondents are people with disabilities and 1,569 respondents are people without disabilities.

N.O.D., which is celebrating its 20th anniversary this year, advanced the cause of the ADA throughout the 1980s, and played an active role in its passage and in the ceremony at which President George H.W. Bush signed it into law.

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