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SCHAFER AUTISM REPORT "Healing Autism:
No Finer a Cause on the Planet" ________________________________________________________________
January 14 & 15, 2004 Double Issue Vol. 8 Nos. 11 & 12
NOTE: New Updated-Monday Calendar of Events:
http://home.doitnow.com/~edit
RESEARCH
* Scientists Discover New Gene Essential For The Development of
Normal Brain Connections Resulting From Sensory Input
* OAR Announces Winners of 2003 Research Grant Competition
EDUCATION
* 20 Ways To Ensure the Successful Inclusion of Asperger Child in
the General Education Classroom
* Data Show States Return Millions To Feds Instead Of Spending It
On Schools
* Services Fall Short For Kids With Handicaps in Michigan
PUBLIC HEALTH
* Fury as Doctor Denies MMR Autism Link in UK
* UK Doctors Giving MMR 'By Stealth'
* Accusations of Bias Prompt NIH Review Of Ethical Guidelines
AWARENESS
* Brilliant Minds Linked to Autism
RESEARCH
Scientists Discover New Gene Essential For The Development of Normal Brain Connections Resulting From Sensory Input
[By Sherry Seethaler.]
http://ucsdnews.ucs
Biologists at the University of California, San Diego and the Johns Hopkins University have discovered a gene that plays a key role in initiating changes in the brain in response to sensory experience, a finding that may provide insight into certain types of learning disorders.
After birth, learning and experience change the architecture of the brain dramatically. The structure of individual neurons, or nerve cells, changes during learning to accommodate new connections between neurons. Neuroscientists believe these structural changes are initiated when neurons are activated, causing calcium ions to flow into cells and alter the activity of genes.
In a paper featured on the cover of the January 9th issue of the journal Science, biologists at UCSD and the Johns Hopkins University medical school report the discovery of the first gene, CREST, known to mediate these changes in the structure of neurons in response to calcium.
"We discovered the gene CREST using a new method we developed to identify genes that are switched on in the presence of calcium," says Anirvan Ghosh, a professor of biology at UCSD who headed the study. "The brains of mice lacking CREST appear normal at birth, but do not develop normally in response to sensory experience after birth. This parallels some learning disorders in humans where the child appears normal initially, but by the age of two or three years it becomes clear that there are failures in the acquisition of new knowledge."
Neurons from normal mice develop a highly branched tree-like structure. In fact, much of the growth of the brain that occurs soon after birth is the development and branching of dendrites—the part of a nerve cell that receives input from other neurons. Thus, this branching allows neurons to form many different synapses, or connections, with many other neurons, permitting much cross talk between them. Neurons taken from mice lacking the CREST gene are more linear, like a plant shoot.
In addition, when individual neurons kept alive in a Petri dish are stimulated with calcium ions, they respond by developing highly branched dendrites, but neurons taken from mice lacking CREST fail to branch in response to calcium.
"CREST is the first example of a transcription factor—a protein that turns genes on and off—that appears to be specifically required for the development of brain neurons after birth," explains Ghosh, who conducted the study at his former laboratory at Johns Hopkins.
His new laboratory at UCSD is currently working to determine what gene is targeted by CREST. Ghosh suspects the CREST gene might be turning on the production of chemicals called growth factors, for the stimulatory effect they have on cell development.
The CREST protein produced by that gene is made in several regions of the brain immediately after birth. In adults, the protein is produced in a region of the brain known as the hippocampus, which plays an important role in learning and memory. Because of this, Ghosh suspects that CREST may be necessary for the storage of new memories and the ability to learn. His laboratory is currently developing mice in which CREST expression is normal throughout most of development, so the brain develops normally, but then shuts off in the hippocampus when the mice reach adulthood. In this way, the researchers can test the specific role of CREST in learning and memory in adults.
"Humans also have CREST, and the CREST gene sequence is highly similar between mice and humans," says Ghosh. "If it turns out that CREST plays a role in learning and memory in the mouse, then it is very likely it also plays a similar role in humans."
The other researchers involved in the study are Hiroyuki Aizawa, Shu-Ching Hu, Kathryn Bobb, Karthik Balakriashnan, Inga Gurevich and Mitra Cowan. The study was supported by the National Institutes of Health, the March of Dimes Birth Defects Foundation, the Klingenstein Foundation, Merck and the Uehara Memorial Foundation.
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* * *
OAR Announces Winners of 2003 Research Grant Competition
[From an organization announcement.]
The Organization for Autism Research (OAR) announced the results of its 2003 Applied Research Competition today, awarding $60,000 in grants to fund studies by Edward Carr, Ph.D., at the State University of New York at Stony Brook and Lawrence Scahill, MSN, Ph.D. and a research team at the Yale Child Study Center in New Haven, CT. Three more proposed studies remain under consideration for funding early this year. These awards bring OAR's total to four studies funded and $120,000 in research grants in the past 12 months. This announcement marks the culmination of a 9-month long research competition that began with 26 proposals. OAR's Scientific Council narrowed the initial field to 11 studies, which were then put through a rigorous review and scoring process. From that, five studies emerged as finalists. Of those, Dr. Carr's and Dr. Scahill's were approved for immediate funding.
At Yale, Dr. Scahill's study, entitled Social Skills Development in Children with Autism Spectrum Disorders, will look at the effects of a 12-week intensive group intervention program designed to promote "social motivation" and "appropriate social behaviors" in children with Autism Spectrum Disorders. Suzanne Letso, MA, BCBA, a member of OAR's Scientific Council and one of the study's principal evaluators, explains the significance of the study. "It will contribute to our knowledge of the utilization of applied behavior analytic educational strategies within a group training context. These educational strategies may ultimately be used in public school classrooms, recreational activities and community settings. This study also may lay the ground work for future studies by identifying socially significant target skills that can be effectively taught by peers, as well as the best ways to train and support peer tutors in natural settings."
Dr. Carr's study, Problem Behavior: The Development of a Contextual Assessment Inventory for Use by Families, focuses on decreasing problem behavior in persons with autism by developing an effective method to assess the cause or causes of the behavior. Identifying these factors will enable families and service providers to more effectively choose appropriate interventions to decrease or eliminate the behavior. Calling Carr's study "very timely," Shahla Alai Rosales, Ph.D., a member of OAR's Scientific Council, highlighted the potential benefit of Carr's research, "The resulting tool will be very useful to practitioners."
The remaining three studies cover a range of topics, including imitation skills in young children with autism, peer relationships in middle school between children with autism and their typical classmates, and social integration of adults with autism in the workplace. While each was highly rated, OAR's Scientific Council has proposed modifications to strengthen the design and methodology. OAR will reconsider each and make any additional grants by the end of March For abstracts of both Dr. Scahill's and Dr. Carr's studies visit
www.researchautism.org and click on the Research button. For more information on the studies or for information on OAR's annual research competition, contact Mike Maloney, Executive Director, at703-351- 5031 or mmaloney@researchautism.org.
* * *
EDUCATION
20 Ways To Ensure the Successful Inclusion of Asperger Child in the General Education Classroom
[Intervention in School and Clinic.]
http://library.usask.ca/ejournals/full.phtml?issn=1053-4512Children with Asperger syndrome (AS) have a variety of issues that must be addressed on a daily basis. Because these children tend to be high-functioning, many are placed in general education classrooms in order to receive the best education possible. Teachers working with children with AS may not be aware of how to provide the best inclusive environment. The following are strategies and tips that can be incorporated to help these children adjust and become successful in the general education classroom.
1. Establish a schedule early on, and be consistent with it. Children with AS find comfort in knowing exactly what will happen next. By providing these students with a very consistent schedule that has little variance, you increase their sense of security, making them better able to function appropriately in the classroom and feel successful about their work (Attwood, 1998; Brownell, 2001; Myles & Simpson, 1998).
2. Provide a visual representation of the daily schedule. Posting a chart in the classroom that displays the schedule and routines for the day only adds to this security by allowing the child to determine what will occur next so that she has a better transition to the next activity.
3. Write notes in advance for the child if the schedule is going to change for a special event. Let the child know what the change will be and when it will occur because variation in the routine can lead to stress and anxiety, which can cause outbursts and tantrums. As stated previously, providing advanced notice of alterations in the schedule allows the child time to transition and prepare himself for the change in schedule. In addition, because many children with AS tend to process auditory information less efficiently, written notes allow the child another avenue to obtain and understand the message (Attwood, 1998; Barnhill, 2001a; Council for Exceptional Children [CEC], 2002; Myles & Simpson, 1998).
4. Provide visual cue cards to use during instruction and teaching. Due to the difficulty children with AS have in processing auditory input, visual cues of what is being taught could help them be more successful in taking in the new information and remembering it. They may still require more time to process all the information; however, by providing instruction both verbally and visually, you offer students with AS a better opportunity to learn the material (Barnhill, 2001a; Myles & Simpson, 1998).
5. Set clear expectations and boundaries, and post them on the wall. Once again, providing a visual representation of what is expected so that the child can refer to it as needed provides security and increased opportunities for comprehension of the material, both of which will increase productivity in the classroom (Attwood, 1998; Barnhill, 2001a; Myles & Simpson, 1998).
6. Provide verbal and written instructions for the child. When giving the class instructions or directions for an assignment or activity, provide written instructions that coincide with your verbal instructions for the child with AS. The instructions can be in picture form as well as in words to further aid in comprehension and success (Barnhill, 2001a).
7. Ask questions to check the child's understanding of the instructions you have just given, or ask him to verbalize the instructions back to you to Clarify understanding. Many times, children with AS appear as though they fully comprehend what is being asked of them or what they have read because of their "professor-like" responses to questions; however, these may mask the fact that their comprehension is truly lacking. By probing further, you can ask more pointed questions or have the child verbalize in her own words, not repeating your exact phrases, what is expected (Barnhill, 2001a; Myles & Simpson, 1998).
8. Use a timer to limit perseveration/ echolalia/singing. Establish the routine that as soon as the timer goes off, the child returns to the previous activity. Some children with AS will begin to perseverate on objects or ideas or participate in other behaviors that can hinder academic development during the school day. Providing a time limit will help curb such behaviors so that academic progress can be made. You must establish the routine that as soon as the child begins to exhibit a certain inappropriate behavior, the timer is set for a certain amount of time. The child must then be taught that as soon as the timer rings, she must rejoin the rest of the class in the current activity. As time progresses, the time limit should be reduced so that less and less time is actually being spent on such behaviors (Grandin, 2001).
9. Allow the child to earn "free time" in the child's chosen area of interest, such as art or computers, for completing work. Children with AS tend to have an area of intense interest that can consume their conversations and activities. Using this interest to motivate the child can help him learn to be productive in his work while still having time to concentrate on his area of interest (Brownell, 2001; CEC, 2002; Grandin, 2001).
10. Teach the other children how to interact appropriately with the child with Asperger syndrome in both academic and social settings. Children can be very supportive and accepting of people with disabilities and differences when they are taught to have such compassion and are shown how to work and play with those individuals. In order for the child with AS to be fully accepted in the classroom, the other children in the classroom have to be taught how to interact and accept her. Through role-playing, modeling, and discussions, successful friendships and interactions can take place and even add to the successfulness of inclusion.
11. Model and role-play social situations incorporating appropriate behaviors. Continually working on general socially accepted behavior helps children with AS begin to internalize the behaviors that are expected of them in society. By watching both good and bad examples of behaviors that occur in various social situations, these children can learn to make better choices in their behavior (Barnhill, 2001b).
12. Teach specific socially appropriate phrases to use in certain situations. By providing a written script that the child can use in various situations and allowing her to practice her reactions in role-playing activities, you make it more likely for the child to be successful socially. During such social events where the child is expected to act as taught, prompting may be necessary to remind her how to act until she has had ample opportunities to practice the skill in a real-life situation (CEC, 2002).
13. Provide social skills practice and role-playing for any upcoming social events. Students with AS need to have opportunities to act out certain situations so they can prepare for them socially. Because children with AS have poor social judgment, repetitive practice prior to the event will provide them with the knowledge they need to respond appropriately. However, because transfer to different situations may be difficult to achieve, these children must have several opportunities to practice these socially appropriate behaviors in a variety of contexts (Barnhill, 2001b).
14. Provide a social skills notebook with stories of correct and incorrect social behaviors that the child can use as a guide and reference. This notebook can be used to prompt the child as to what behaviors are considered appropriate or not appropriate in various social situations. Providing weekly opportunities to read through the stories in a notebook, continuing to stress socially appropriate behaviors, and practicing how to use them in real-life situations will enhance the student's social successfulness (CEC, 2002).
15. Provide visual cue cards of expected social behaviors, and place them in areas where those behaviors are expected. Visual cue cards can be used as prompts of expected behaviors of the child in various settings. Through role-playing and modeling, students are first introduced to the behaviors. By including visual cue cards in this role-playing, you help the child with AS learn to use those visual cues to help him remember what behavior he should exhibit in the classroom and school environments. However, children must be taught how to use these cards. They cannot simply be posted in the room in hopes that the child will understand what their purpose is. They must be shown how to use them and be allowed time to practice using them (CEC, 2002).
16. Write down what behavior the child is exhibiting and what behavior he or she should be exhibiting. For example, "You are drawing on your paper. A better choice would be to work on writing your story." Once again, providing written responses instead of verbal ones may help the child with AS better understand what is being asked of her. Connecting these messages to visual pictures may also be beneficial (Grandin, 2001).
17. Have the child complete this same activity with his own behavior. After the child has been exposed to the method previously described, he can then begin doing it himself with or without prompting. Writing the message to himself and posting it in his notebook or on his desk may help him internalize and remember the expected behavior.
18. Begin discussing with the child how others view his acting out. Children with AS have difficulty understanding how to initiate or maintain soc\ial interactions. They do not realize what effect their acting out has on those around them. You should therefore begin discussing these issues with the children early in order to facilitate a better understanding of the social consequences of their behaviors (CEC, 2002).
19. Provide a safe place in which the child can retreat when she becomes overstimulated or has difficulty adjusting to a new activity or environment. This base could occupy a corner of the classroom where the child can be in a dark, quiet place with little or no stimulation in order to calm down. Once the child feels secure and in control of her body, she can join the class again (CEC, 2002; Grandin, 2001).
20. Be very patient and ready to teach both academic and social skills over and over again. Children with AS need a teacher who will remain calm when the situation escalates. When the teacher begins to get frustrated and tense, the same feelings will tend to heighten in the child. However, dealing calmly with the situation will allow the child to calm down more quickly. In addition, being aware that the child with AS will need a great deal of practice and repetition of newly taught skills in order to be successful will help you better prepare for what you will need to do to help that child be successful.
Persons interested in submitting material for 20 Ways To . . . should contact Robin H. Lock, College of Education, Box 41071, Texas Tech University, Lubbock, TX 76409-1701.
Robin H. Lock, Dept. Editor
References
Attwood, T. (1998). Asperger's syndrome: A guide for parents and professionals. London: Kingsley.
Barnhill, G. (2001a). What is Asperger syndrome? Intervention in School and Clinic, 36(5), 259-265.
Barnhill, G. (2001b). What's new in AS research: A synthesis of research conducted by the Asperger Syndrome Project. Intervention in School and Clinic, 36(5), 300-305.
Brownell, M. (2001). Steven Shore: Understanding the autism spectrum-What teachers need to know. Intervention in School and Clinic, 36(5), 293-299.
Council for Exceptional Children, (2002). Strategies to help students with autism [Electronic version]. CEC Today, 8(8), 1, 5-9.
Grandin, T. (2001). Teaching tips for children and adults with autism. Online Asperger's Syndrome Information and Support (OASIS). Retrieved from
http://www.udel.edu/bkirby/asperger Myles, B., & Simpson, R. (1998). Asperger syndrome: A guide for educators and practitioners. Austin: PRO-ED.About The Author
Holly R. Bullard, EdD, is an assistant professor of elementary education at Lubbock Christian University. Her current interests include examining the process of learning to read for children with autism and the successful inclusion of autistic children in the general education setting.
Address: Holly R. Bullard, College of Education, Eubbock Christian University, 5601 W. 19th St., Lubbock, TX 79407.
* * *
Data Show States Return Millions To Feds Instead of Spending It On Schools
[By Nancy Zuckerbrod for the Associated. Thanks to Cindy Rubaie.]
http://www.detnews.com/2004/schools/0401/10/schools-31658.htmWhile state officials nationwide say they need more money to educate children, newly released figures show states are returning millions to the federal Treasury rather than spending it in the hinterlands.
Last year, states returned $124 million to Washington that was to have gone toward large education programs such as special education and aid to poor children, according to Education Department data obtained by The Associated Press.
The states had more than three years to tap into the money before it reverted to the federal government on Sept. 30, 2003, said C. Todd Jones, a budget official in the Education Department.
The money was less than 1 percent of the $18 billion in federal funding that had been allocated to states on formulas in force during that period, Jones said Friday.
It could have been put to good use in the states, he said, and they have much flexibility in the money’s use. States, he said, "should seriously investigate why they are turning such large sums back to the federal Treasury."
States and territories that returned the most were Florida, Georgia, Louisiana, Michigan, Missouri, New Mexico, Puerto Rico, Tennessee, Texas and Virginia, the department said.
"We try to spend every penny that the federal government sends us," said Debbie Ratcliff, a spokeswoman for the Texas Education Agency, which sent back $11 million.
Ratcliff said schools sometimes let federal money lapse or fail to satisfy requirements for it, but she said the state agency doesn’t always find out in time to send the money to alternative schools.
Tennessee, which returned $3.9 million to the federal government last year, is working to fix the problem by having budget officers work more closely with program experts, said Kim Karesh, a spokeswoman for the state education department.
"This is an area where we absolutely have to improve," she said. "Should we be sending this money back? No, because we have a need for it in Tennessee."
Karesh said Tennessee returned the money because costs for contracts came in lower than expected. She said the state then failed to seek out other ways to spend the extra dollars.
A range of critics, from governors to Democratic presidential contenders, say the 2002 No Child Left Behind education law is enormously underfinanced. The law places broad mandates on states, including a requirement for highly qualified teachers in all core classes, expanded standardized testing and data collection and reporting on student performance.
Jones said states have wide latitude in how they can use leftover money as long as it goes toward the intended program. For example, if a state should spend less than expected on special education teachers, it could use the extra money to hire physical therapists or pay for buses accessible by the handicapped.
Besides the $124 million in formula funding returned, states sent back $30 million last year that was supposed to have gone toward projects specific to a state. Jones said it is not easy for states to reprogram that unused money .
The money returned to the U.S. Treasury is different from roughly $6 billion in federal funding the Bush administration says states are sitting on that has not yet expired. The administration this week countered arguments that it was inadequately funding education by saying states are taking too long to spend billions of federal dollars meant for schools.
On the Net: U.S. Department of Education:
http://www.ed.gov/index.jhtml* *
Return to Sender
A state-by-state look at federal funding for ongoing education programs that reverted back to the U.S. Treasury last year after states failed to spend
it:
Ala.$1,517,152 Alaska 396,396 Amer.Samoa 901,109 Ariz. 3,013,975
Ark. 56,241 Calif. 1,680,554 Colo. 912,933 Conn. 915,805
Del. 522,817 D.C. 3,077,389 Fla. 3,525,865 Ga. 3,643,267
Guam 968,860 Hawaii 229,132 Idaho 241,109 Ill. 1,052,991
Ind. 1,485,081 Iowa 337,920 Kan. 79,947 Ky. 374,989
La. 6,060,902 Maine 31,579 Marian Isls 77,922 Marshall I 0
Md. 1,772,645 Mass. 126,313 Mich. 5,093,607 Microne. 364,604
Minn. 116,408 Miss. 793,899 Mo. 4,696,297 Mont. 279,013
Neb. 271,161 Nev. 685,696 N.H. 233,702 N.J. 3,447,871
N.M. 6,215,135 N.Y. 1,653,779 N.C. 80,381 N.D. 1,062,722
Ohio 580,218 Okla. 451,311 Ore. 692,200 Palau 65,488
Pa. 3,457,847 PRico 38,636,034 R.I. 37,488 S.C. 372,997
S.D. 131,527 Tenn. 3,869,768 Texas 11,007,911 Utah 108,715
Vt. 18,258 Va. 3,452,832 V. Isls. 2,038,587 Wash. 424,657
W.Va. 118,118 Wis. 465,247 Wyo. 386,579 Tot $124,438,947
[Set font to monospace for regular table.]
* * *
Services Fall Short For Kids With Handicaps in Michigan
[From the Detroit Free Press. Thanks to Cindy Alspach.]
http://www.freep.com/voices/editorials/ekids11_20040111.htmIn its first look at children with disabilities, the annual Kids Count in Michigan report contains some stunning figures: Seven percent of 5- to 15-year-olds in the state have some kind of physical impairment or learning problem that requires extra support. That percentage nearly doubles for teens age 16 to 20, when the definition of impairment expands to include inability to hold a job.
The statistics, drawn from responses to the long census form, offer just a glimpse of how many families in this state are struggling to raise children who need specialized help at school, more than routine health care and other services. Another analysis, based on parents reporting whether their children have special health care needs, showed 14 percent of Michigan kids -- one in every seven -- with chronic problems.
The implications are staggering for any family, but the burdens fall especially hard on those that struggle economically. They have fewer resources and less capacity to navigate the fragmented systems that assist handicapped children -- or even find out that the services exist. They also have more exposure to hazards that cause problems, such as older houses with lead paint or bad air quality that may trigger an asthma attack.
Most distressing, children in populous counties appear to be least well served. Wayne and Oakland Counties have the lowest use of the state's Early On program, which coordinates services for infants and toddlers with developmental problems. Separate statistics for Detroit also indicate that children with problems are vastly underserved. The percentage of Detroit kids in special education is below the state average, even though other statistics show children in Detroit suffer from handicaps, birth defects and lead poisoning at above-average rates.
Because Kids Count has never looked at this problem before, trends can't be determined either in the problems facing kids or the help they get. But the numbers are high enough to cause concern. Children who face health and learning problems need a lot of extra support to reach their full capacity as adults -- and especially as budgets have to be trimmed in these trying economic times, it's not likely they're all getting the help they need.
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PUBLIC HEALTH
Fury as Doctor Denies MMR Autism Link in UK
Editorial
http://www.hamhigh.co.uk/archived/2004/0109/news/asp/p4news2.asp
A Royal Free doctor has provoked a storm of protest after defending the controversial MMR vaccine in the Ham&High.
A flood of letters in response to last week’s article – including several from the USA – accused Professor Brent Taylor of bias in casting doubt on a link between an increase in autism and bowel disease with the Measles Mumps and Rubella vaccine.
In an emotional letter one mother said her children had suffered "mood swings, food allergies and diarrhoea" following the jab: "What proof do you have? I have two children, both of whom had their GI tracts affected right after receiving the MMR vaccine." But Prof Taylor, head of paediatrics at the hospital in Pond Street, denied one major accusation that his own research disputing the link had been funded by MMR pharmaceuticals giant Merck.
He said funding for his two epidemiological studies had come from first the Medicines Control Agency and then from the Department of Health.
"These criticisms are not new and it is surprising to see them still appearing. They have been answered on many occasions," he said.
Last week, Prof Taylor attacked a Channel Five drama about MMR and said deaths could result from the exceptionally low uptake of the vaccine following the 1998 report by his Royal Free colleague, Andrew Wakefield, which suggested a link between MMR and autism.
Campaigners who contacted the Ham&High claimed that the professor’s studies, which suggested that the increase in autism cases were the result of greater reporting and better awareness of the condition, were flawed.
One letter writer said: "This doesn’t fit the facts. The evidence of a massive rise in autism is all around us… Two decades ago, rates of autism were one in several thousand.
"And yet I have personally come across a rate of 1 in 69 among three-year-old boys, and the Scottish press has just reported a rate of 1 in 49 amongst school children in and around Inverness."
Another writer said: "Maybe Brent Taylor should throw his hands up and admit he is wrong when the numbers keep coming in from the US Department of Education and the State of California showing an annual increase in rates of autism."
But Prof Taylor said there had been no well-founded criticism of his work.
"Other researchers in this and other countries have done and published similar studies to ours and all have found the same results as we did," he added.
* * *
UK Doctors Giving MMR 'By Stealth'
[By Beezy Marsh, Daily Mail.]
http://www.femail.co.uk/pages/standard/article.html?in_article_id=200847&in_page_id=169
Family doctors have been accused of administering the MMR jab by stealth to children coming into their surgeries to receive other vaccinations.
At least 50 horrified parents have complained that their GPs have 'mistakenly' given their children the combined measles, mumps and rubella vaccine, it has emerged.
All the children had been recalled to their GP practice to receive a booster jab of the Hib vaccine, which protects against the potentially deadly haemophilus influenza type B disease, which causes meningitis.
Once there, they have been given the MMR jab in an apparent mix-up.
Youngsters aged between six months and four years are often called in to receive a Hib booster dose - but there are fears that some GPs are using it as an opportunity to adminster the MMR without parental consent.
The jab is at the centre of fears of a possible link to autism and bowel disease, leading to a dramatic fall in uptake, which now stands at 82 per cent nationally.
In London, the rate has plummeted to 67.5 per cent, prompting fears of measles outbreaks.
Some critics say family doctors are being pressured into underhand methods in order to help meet targets on MMR uptake, and win extra payments.
GPs get more money for vaccinating 90 per cent of children but those who fail to meet the target - by even one child - can lose more than £2,000 a year.
One distraught mother was allegedly told by a practice nurse who had just administered the MMR without consent: 'You were on our target list for the MMR.' Other GPs have claimed they did not realise the parents had not consented to the jab and apologised for their 'mistake'.
Many of the children had already received single measles, mumps and rubella vaccinations from private clinics.
One mother from Bedfordshire whose four-year- old son was vaccinated with MMR without her consent said yesterday: 'I had purposely given my son single vaccines because I was concerned about autism.
'But the GP gave the MMR to him without my consent when we went in for the Hib booster.
'I only found out because I asked why he was giving my son two injections.
'It made me feel distraught and angry. I was beside myself with concern about what was going to happen to my son's health.' Sarah Dean, director of the private jabs clinic Direct Health 2000, said: 'We have been receiving about ten calls a week for the past five weeks and all of the parents are telling a similar story.
'They go in for the Hib booster and end up with their child having the MMR without their consent.' Complaints of the 'MMR by stealth' have flooded in from the sanctuary at Haywards Heath, West Sussex, for 16 months until her dismissal in April. The centre was one of two that Miss Lane, the writer of TV sitcoms Bread and Butterflies, set up in the early 1990s.
Miss Rutherford claimed to have been the victim of sexual discrimination by John Bully, the manager of the sanctuary, who she said had 'psychologically bullied' her.
She told the tribunal in Brighton that he had made explicit sexual comments to her and stood close to her to scream orders in her face.
He once offered her £5,000 to sleep with his son because he disliked his son's girlfriend.
His behaviour made her so frightened she would hyperventilate and burst into tears. She was eventually signed off with stress by her doctor.
'It made me feel increasingly isolated, threatened and uncomfortable in his presence but at no time did Carla seem interested when I tried to talk to her about it,' she added.
Animal rights campaigner Miss Lane, 64, told the tribunal: 'I did not want to sack Mandy but I need there to be peace and tranquillity at the sanctuary.
'One member of staff said he did not want to work there anymore because of her outbursts.' Miss Lane said she was considering appealing against the decision.
London, Liverpool, Birmingham, Kent, Devon and Cornwall.
Mrs Dean said: 'Are we really supposed to believe that all these practices are making innocent mistakes? 'Parents are devastated and quite rightly angry. Questions are being asked about whether GPs are doing this because of a financial motive in order to meet their MMR practice targets.' Last night the British Medical Association warned that giving an injection without seeking full and informed parental consent constituted an assault on the child which could lead to criminal charges.
The BMA has already warned that the MMR target payments system is undermining trust between doctors and patients.
Dr Simon Fradd of the BMA GPs committee said: 'While I cannot comment on specific cases, we would not condone this type of practice at all.
'At the end of the day, it is for the parents to make the decision about what is right for their child.
'No treatment should be administered to the child without the parent's consent and to do so represents an assault.' A Department of Health spokesman said: 'No children should be immunised unless their parents have given consent. None of the childhood vaccinations available in the UK are compulsory.' Some parents have been concerned that giving the MMR after single jabs could pose the threat of an 'overdose' of the vaccine, but health experts say this is not the case.
It is safe for children to have the MMR after being given single jabs.
* * *
Accusations of Bias Prompt NIH Review Of Ethical Guidelines (Fox to Guard Hen House Better?)
[By Jonathan Knight for Nature.]
http://www.nature.com/cgi-taf/gateway.taf?g=5&file=/drugdisc/news/articles/426741a.html
The US National Institutes of Health (NIH) is to reassess its ethics rules following allegations that consulting fees paid to some of its top scientists have biased decisions in clinical research.
The charges, leveled by the Los Angeles Times on 7 December, centre on consulting fees paid to a number of the agency's top scientists by private drug firms. The paper alleged that such deals had influenced research decisions involving the companies' products.
It also suggested that the problem runs deep and is hidden from public view by rules that allow most NIH scientists to keep their consulting deals confidential.
The office of NIH director Elias Zerhouni issued a statement on 10 December to say that the allegations are being investigated but that all employees are believed to have followed government ethics rules. Nevertheless, it added: "We will need to consider changes after a thoughtful analysis of the issue."
The House Committee on Energy and Commerce, which oversees the NIH, has demanded complete records of all consulting deals made by in-house NIH scientists since 1999. The agency has offered its full cooperation with the investigation.
The NIH campus in Bethesda, Maryland, is the world's largest biomedical research centre. But until 1995, scientists there faced strict limits on their consulting activities. These rules were revoked by then director Harold Varmus in an attempt to make the NIH more attractive to top researchers. Under the new rules, scientists continued to be barred from consulting if they were also directly involved in a company's dealings with the NIH, and all deals were subject to approval by ethics staff.
But according to the Los Angeles Times, these guidelines have not prevented conflicts of interest - and in some instances may have biased decisions on clinical research. Cecil Fox, a private research consultant in Little Rock, Arkansas, says that the paper's article is right on target. Fox was a scientist at the National Institute for Allergy and Infectious Diseases from 1973 to 1991, and consulted for many labs at the Bethesda campus until last year. He says that private deals with industry have seriously compromised the independence of many NIH researchers.
Colleagues of the researchers named in the Los Angeles Times article have been quick to spring to their defence. One, who spoke on the condition of anonymity, said that the ethics charges were completely overblown. "I know the people and they are people of the highest integrity," he said.
But the high degree of confidentiality surrounding consulting deals at the NIH is disturbing even some of the agency's defenders. The 1989 Ethics Reform Act requires prominent or highly paid government employees to file public disclosures of outside income. Other employees, meanwhile, file confidential reports that can be reviewed by Congress, but that are not available to the public.
With more than 94% of its high-earning employees falling into the bracket, the NIH has one of the highest percentages of confidential filers in the government. In part, this is because the agency has widened its pay bands in recent years, assigning highly paid staff to grades that allow confidential filing.
These wider pay brackets were the only way the NIH could increase the salaries of high-level scientists that it didn't want to lose, says Varmus. But he adds there should be greater public transparency from the NIH: "I think that should be reviewed at this point."
* * *
AWARENESS
Brilliant Minds Linked to Autism
http://news.bbc.co.uk/1/hi/health/3380569.stm
Historical figures including Socrates, Charles Darwin, and Andy Warhol probably had a form of autism, says a leading specialist.
Professor Michael Fitzgerald, of Dublin's Trinity College believes they showed signs of Asperger's syndrome.
Scientific geniuses Isaac Newton and Albert Einstein have also been previously linked to the condition.
Asperger's is associated with poor social skills, and obsessions with complex topics such as music.
However, people with the condition are often bright, and have above average verbal skills.
Professor Fitzgerald said the number of people being diagnosed with Asperger's had significantly increased as doctors had become more aware of the condition.
He came to his conclusion after comparing the behaviour of his patients with that described in the biographies of the famous.
He believes the author Lewis Carroll, the poet W.B. Yeats and former Irish prime minister Eamon de Valera also showed signs of autism disorders.
He said: "Asperger's syndrome provides a plus - it makes people more creative.
"People with it are generally hyper-focused, very persistent workaholics who tend to see things from detail to global rather than looking at the bigger picture first and then working backwards, as most people do.
The case of Yeats Eamon De Valera: A single-minded politician "Yeats for example, had problems with reading and writing and did very poorly at school.
"He failed to get into Trinity College and was described by his teachers as 'pedestrian and demoralised'.
His parents were told he would never amount to anything.
"This is typical of people with the condition.
They don't fit in, are odd and eccentric and relate poorly with others.
Most are bullied at school, as Yeats was." And yet, said the professor, Yeats went on to prove that he had a hugely vivid imagination while remaining socially aloof - both classic signs of Asperger's.
Strange behaviour Warhol's unusual behaviour, his odd relationships and his distinctive art also strongly suggested that he had the condition, said Professor Fitzgerald.
Charles Darwin: Revolutionary theories
"He was a massive collector of articles, but didn't even take them out of the packaging - his house was like a mausoleum - and he had the same difficulties at school." Professor Fitzgerald said the success of such high profile figures gave hope to people whose lives were touched by Asperger's syndrome.
"It proves that we should accept eccentrics and be tolerant of them," he said.
"The nation is pushed forward by engineers, mathematicians and scientists." The claims are made in Prof Fitzgerald's new book: In Autism and Creativity: Is There a Link Between Autism in Men and Exceptional Ability?
* *
Brief Commentary: Once again, sigh, it's time to play "pin the label on the dorky", thanks to the idyll musings of Professor Michael Fitzgerald (and "autism experts" of the like.) [read sarcasm] In the service of promoting silly books that trivialize autism, the blurring of Asperger's with the rest of autism spectrum does everyone a disservice. Asperger's categorically sits on top of the high-functioning end of the autism spectrum.
But if anything defines autism, it is NOT being high functioning anything. This is not to say that Asperger Syndrome is not a serious matter, but that it is more different than the rest of autism than it is similar. Perhaps the time has come to refer to Asperger's as Asperger's, and autism as autism. In the name of autism awareness clarity, I'd even take it a step
further: the Asperger's label ought to be kicked off the spectrum altogether. Einstein, Yeats and Darwin were no more autistic than Hellen Keller was a pinball wizard. -LS.
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