FEAT Daily Newsletter 4-2-02 (Part 2)

FEAT DAILY NEWSLETTER Sacramento, California

and THE AUTISM NETWORK http://www.feat.org

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April 2, 2002 Autism Database Search www.feat.org/search/news.asp

 

TREATMENT

* Diet, Supplements, And Autism Spectrum Diagnoses: Is There

Therapeutic Value?

PUBLIC HEALTH

* They May Be Right To Be Wary

* Reader's Posts

 

Diet, Supplements, And Autism Spectrum Diagnoses: Is There Therapeutic Value?

[By Judy Converse, a nutrition care professional in redflagsweekly.com, Special Features. See explaination of web-based publication at end of article.] http://www.redflagsweekly.com/features/converse.html

Autism includes a spectrum of diagnoses which fall under the umbrella of pervasive developmental disorders (1). These diagnoses include Autistic Disorder, Rett’s disorder, Childhood Disintegrative Disorder, Asperger’s Disorder (ASp), and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Impairments in social and/or communication skills, though in greatly varying degrees, are common to these diagnoses.

Also noted across this spectrum are varying impairments in motor skills, cognition, and play skills (i.e., lack of imaginative play). Children falling on the spectrum often have restricted, repetitive behaviors, rigidity, or peculiar movements such as toe walking, teeth or finger clicking, rocking, or hand flapping. Seizures or mental retardation may be present as well. Diagnosis is usually made by age 3 or 4 excepting ASp, which may be diagnosed later in childhood, since verbal and cognitive skills are within normal limits in toddlerhood. AD is an especially devastating diagnosis for families, as few children with it go on to function independently as adults.

Once viewed as a form of schizophrenia caused by indifferent parenting, autism spectrum diagnoses (ASD) are now regarded as distinct and genetic in origin. But recent developments have generated debate over the possibility that autism is a systemic, treatable illness precipitated by genetic vulnerability plus an early environmental trigger (2,3). Initiating debate are the rise in ASD diagnoses in the last decade (4-6) which defies incidence for an inherited disorder; and secondly, the long-observed phenomenon that ASD children present with consistent, significant gastrointestinal, biochemical, and immune function changes, along with consistent dietary rigidities (7-31).

The contention made by many parents and a growing group of physicians and nutrition care professionals is that when physical symptoms are aggressively treated, the developmental injury of autism can subside, possibly to the point of losing the diagnosis. Both issues raise objections from many who have long worked in this field, who fear that parents may be misled to believe that autism is reversible. This is a pertinent debate for nutrition care professionals with expertise in early childhood growth, gain, feeding, and special diets.

Is the rise in autism a true rise in incidence, or simply an artifact of heightened awareness and broadened diagnostic criteria? Two extensive reviews concluded that no true rise is occurring and estimated prevalence to be holding steady at roughly 5 per 10,000 (32,33). These reviews have been criticized for omitting children born since 1990, the decade in which the most severe rise and the fewest changes in diagnostic criteria occurred (34).

Though broadened diagnostic criteria can account for an initial increase in incidence, it can not account for the continued and steep rise in autism throughout the last decade. Nationwide, cases have risen from some 5,000 in 1990 to 60,000 nationwide by 2000 (4). From the 1997-98 to the 1998-99 school year, the number of US children with autism receiving services under the Individuals with Disabilities Act (IDEA) rose 24%, while children with all other disabilities served under IDEA rose less than 3% (4).

Of all indicators, enrollment in IDEA programs and services due to autism diagnosis is perhaps the most practically relevant, as it represents a substantial portion of the costs which autism creates for communities. The costs of educational supports for a child with autism are high, and medical diagnosis is required for access to services. With diverse needs among students and restricted budgets, few school systems yield these costly supports without careful scrutiny of a child’s diagnosis.

Only the most affected children are likely to be served. The process of diagnosis itself can take months, as it typically includes evaluations from specialists in speech, hearing, social and cognitive skills, and motor and self regulatory skills. Also, IDEA data does not reflect new diagnoses of toddlers not yet in school programs, nor diagnoses of adolescents who did not qualify for services prior to changes in DSM-IV-TR diagnostic criteria in the late 1980s. Thus IDEA data will reflect under-reporting.

This increase has received legislative scrutiny in California, where Department of Developmental Services data (35) showed that the number of persons entering the system with autism increased dramatically from 1987-1998 relative to cerebral palsy, epilepsy, and mental retardation diagnoses. The data also showed that this accelerated rate appears to be sustaining an upward trend into future years; hence a call for increased funding for school and community supports was made.

The staggering medical, emotional, and financial costs of autism have driven parents to seek new tools for better prognosis. An early monograph in this regard provided parents of affected children with information on the therapeutic use gluten and casein free diets (36). Written by a parent of an affected child who had success with a restricted diet, this book included information on the opiate theory, which holds that maldigestion of gluten and casein and their subsequent, aberrant formation of opiate like compounds (gliadomorphin and casomorphin) are responsible for much of the language delay, behavior, constipation, and dietary rigidity seen in autism (37-47).

Opioid peptides are known to adversely affect neuronal development in the central nervous system (47), to affect perception, sleep, pain, cognition, and immune function (48-52), and to create perseverative behaviors (53). Remaining in question is whether excess diet sourced opiate peptides are present in ASD. Shattock (54) finds that 80% of autistic urines tested (n=1100) contain excessive gluten and casein sourced opiates.

What happens in practice? Anecdotal and clinical success with strict gluten and casein avoidance is reported (38,55-57). In my own short experience with this urinalysis, 10 of 15 ASD children tested showed excess casomorphin, gliadomorphin, or both via AAL Reference Laboratories urinary polypeptide test #6500 (66%), and have subsequently responded positively to strict dietary avoidance of these proteins based on parent report and unmeasured clinical impressions at follow up; and, of ASD children with no urinalysis prior to gluten and casein restriction (n=25), all showed a positive response to the restriction. Twenty-one have unknown outcomes due either to attrition or incomplete trial.

Many parents of ASD children in my practice (n=61) defer urinary opiate testing since it is not covered by insurance. Reimbursement is withheld since not all researchers agree on the relevance of opiate peptides in autism, and because there is not agreement on diagnostic methodology. High pressure liquid chromatography (HPLC) analysis for these peptides is available from only two laboratories in the US and one in Norway (58). These opiate peptides may also be detectable with radioimmune assay (RIA) but have not been confirmed with mass spectroscopy (59).

Many providers object to gluten and casein restrictions, contending that no proof exists for the efficacy of this approach, and that it only makes children with autism less able to participate in peer or therapeutic activities which include food. Still so simple a measure is easy to test, urinalysis or no, with a strict elimination diet. Though gluten avoidance is challenging and requires substitutions across several food groups, many new food products are available for children using this approach, thanks in part to existing resources from the celiac community. Current recommendations suggest a minimum of three months of strict gluten and casein free eating before judging usefulness of the restriction (55-57,60).

The restriction is complete and includes obvious as well as hidden gluten and casein (dextrose, maltose, modified food starch, caramel color, barley malt syrup, calcium caseinate, etc.). Clinical signs that may attend high urinary opiates are aphasia or poor language development; constipation or constipation mixed with wet stools; strong growth and gain or excess weight for stature; marked perseveration and rigidity; marked lack of social connectedness (61).

Caveats include that supplemental B vitamins and calcium are necessary; responses will vary with degree of compliance, duration of compliance, and age at start of intervention; other unresolved gut function or food allergy issues will impede progress; and, children with high opiates may object strongly to new foods and show a lapse in behaviors or functioning at first. Anecdotally, a difficult withdrawal period is considered a harbinger of success.

ASD children most accustomed to diet-sourced opiates will be most likely to eat them to exclusion, and will most likely feel great discomfort without them at first. Benefits reported to me by parents after this phase include increased alertness and awareness, increased calmness, increased words, babbling, or consonant sounds in aphasic children, increased energy for other activities, increased acceptance of new foods, and lessened constipation. Also reported to me have been spontaneous gains in potty skills. Parents have attributed this to an apparent acquisition of previously numbed sensations for eliminations, which would not be inconsistent with postulated opiate effects in ASD (62) or known effects mentioned above.

While the developmental and behavioral impacts of diet-sourced opiates in ASD are debated, still more disagreement exists over the relevance of immune responses to foods seen in ASD (22,24,28). This is doubly vexing because providers must first agree that antibody responses to foods mediated by immunoglobulins E, G, and/or A (IgG, IgE, IgA) are valid and consistently measurable, and must next accept the premise that these responses have behavioral as well as physical effects.

But both these pieces of the autism puzzle remain in dispute. Building the case for their relevance is that intestinal inflammation and permeability are significantly more frequent in ASD (7-10,12,23), both of which will enhance absorption of incompletely digested peptides capable of eliciting antibody responses. IgG antibodies increase intestinal permeability (13). Also noted to be significantly greater in ASD are deficiencies of lactase, disaccharidases, and glucoamylase (9,10), which further serve to present poorly digested food for absorption.

Indeed, it is not uncommon for parents to report to me that their ASD child has never had a formed stool, but has had pale, wet, foul, gold, or mucousy stools with undigested food visible in it since eating solids. Some report 5-12 stools of this type/day beyond age 1 year. Occasional dark dry stool may be mixed in as well. Besides this type of stool, clinical signs which may accompany food intolerance are grey circles under eyes, pallor, bloating, history of or current reflux, picky poor appetite, low or low normal weight for stature, oral tactile hypersensitivity, history of or current eczema, night sweats or frequent waking, and irritability/tantrums.

Classic food allergy responses mediated by IgE (causing hives or

anaphylaxis) are of less interest in this scenario as parents are usually aware of these and have already omitted the triggering foods. IgG food antibody responses can be measured in blood but not on skin prick testing, and it is these which, anecdotally, appear to impact bowel function and behavior for ASD children. Typical IgG offenders in my experience are egg, soy/legumes, dairy foods, and gluten, though all kind of foods, including oils, fruits, spices, and vegetables have elicited IgG antibody responses in children I have tested via Enzyme Linked Immunoabsorbent Assay (ELISA). A greater reactivity to foods found on ELISA IgG analysis appears to positively correlate with intestinal inflammation noted on endoscopy and with wet gold stools >2/day, though this clinical impression remains untested among children in my case load.

Diets restricted across several food groups must be carefully reconstructed with adequate high biological value protein, fats, and carbohydrates. Free amino acid formulas (Pediatric EO28, Elecare) are useful when intestinal inflammation from chronic antibody response is so great that very few foods appear to be tolerated. Resolution of frequent wet stools either by restriction of offending foods, or addition of supplemental enzymes (Creon or over the counter brands) or intestinal anti-inflammatory medications (Gastrocrom, Dipentum) have also produced gains in bowel habits, potty skills, and development, per parent report to me.

 

 

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Though there are some 230 physicians world wide known to be using treatments based on the premise that autism is a treatable, even reversible, systemic illness (63), no formal analysis has yet been compiled from all their current case loads, a measure which could provide invaluable insights. Meanwhile, the Autism Research Institute has maintained a database of some 25,000 ASD persons from over 60 countries which contains parent feedback on dietary tools, including supplements (63). Since these tools are available to anyone, many parents dabble with them, and use restricted diets and/or megadoses of supplements with no professional guidance.

Poor outcomes can occur where parents don’t completely remove gluten and casein, don’t use a long enough trial, don’t make nutritionally or calorically adequate replacements for restricted foods, dose supplements unsafely or inappropriately, or leave intestinal inflammation, intestinal pathogens, or antigenic responses to foods unaddressed. Other concerns include mixing contraindicated medications and supplements, or stopping medications abruptly for a supplement trial.

Findings of malabsorption, enzyme deficiency, peculiar intakes, and intestinal inflammation in ASD make it plausible that micronutrient absorption or metabolism may suffer as well. Many reports in this regard exist (14-18, 64-74), and debate over therapeutic significance is equally active. Errors in metabolism of purines, metallothioneins, sulfur, glucosaminoglycans, serotonin, tryptophan, secretin, thyroid hormones, essential minerals, essential and non-essential amino acids, fatty acids, and heavy metals have been postulated or reported. Each has spurred the development of new supplement products marketed to parents of affected children.

Therapeutic relevance of any one of these items is unknown without pre-treatment clinical assessment and follow up. Given that dietary rigidity and poor gut function may be present, frank nutrient deficiency is not a surprising finding in ASD. This requires assessment and treatment as one would provide for any child. Iron, vitamin A, zinc, magnesium, folate, and B vitamins have emerged as frequently marginal or deficient in ASD.

While replacing clinically deficient nutrients, B vitamins, or calcium lacking in gluten and casein free diets are obvious clinical measures, compensating for metabolic errors with nutritional supplements in ASD is a meagerly explored area of practice. Little is known about the prevalence of metabolic errors in ASD (67,68), but perhaps the most pervasively disabling one suggested to date is reported by Walsh (18) who finds that metallothioneins, the regulatory proteins for copper (Cu) and zinc (Zn), are dysfunctional in autism. Out of 503 ASD patients tested, 499 showed circulating unbound Cu at an average of four times normal levels.

A similar but lesser skew of Cu:Zn has been found in assaultive young males without autism (19). This disordered metal metabolism subsequently impacts zinc-dependent enzymes in any tissue, including those responsible for gluten and casein breakdown (carboxypeptidase A, aminopeptidase). Walsh notes that disabled metallothionein metabolism will waste zinc and thus weaken immune function, heighten sensitivity to mercury, cadmium, and lead, lower gastric secretions and weaken stomach acid, lessen secretin response, and impede maturation of intestinal and brain tissues. Therapeutic suggestions include chelation of toxic metals, avoiding dietary Cu and toxic metal exposures, and adding nutrients which pomote metallothionein production (Zn, glutathione, N-acetyl cysteine, selenium, pyridoxal 5 phosphate, or vitamins A, C, D, and E).

High dose pyridoxine or pyridoxal 5 phosphate have been used for nearly four decades to counter behavioral effects and seizures in autism (69-74). Success in clinical trials is mixed (73,75) and anecdotally, roughly half of ASD children who try this supplement appear to benefit from it. Parents report increased speech, eye contact, and lessened perseverative behavior (72). Therapeutic doses start at 200 times the RDA for children age 1-4 (200-500 mg pyridoxine or 25-50 mg pyridoxal 5 phosphate) and no toxic effects are known at this dosage (76). Hyperactivity is reported by parents in some cases, which is countered with additional magnesium at up to 4 mg/kg body weight. Magnesium as well as taurine may play a role in seizure control (77,78). Taurine is used by some for ASD children at up to 1000 mg/day (79).

Therapeutic use of ascorbic acid and cis-palmitate for ASD have also been explored. A dopaminergic effect of ascorbic acid at several grams/day was postulated as the reason for its effectiveness in one trial (80); the cis isomer of vitamin A, which occurs naturally in mammalian milks, liver, and in fish oils, wins support in another, at ordinary doses (81). The trans isomer of palmitate used to supplement infant formulas, milks, and multivitamins has not shown therapeutic effecitiveness and other sources of palmitate are ideally excluded during this therapy (81).

Therapeutic doses are given at or slightly above the RDA of 2500 IU/day. Ordinary cod liver oil is suitable but specially flavored cod liver oil products are now available for children to increase compliance. Beneficial effects reported to me in practice include cessation of perseverative visual behaviors (opening/closing doors, lining up trains, staring at fans or wheels), increased language, and increased sustained eye contact. Hypothetically, supplemented cis palmitate restores visual processing which has been impaired in ASD by disabled transport mechanisms for this isomer (81). Retinoid receptors critical for vision, sensory processing, language processing, and immune function are thought to regain functioning when cis palmitate is orally supplemented.

Though products exist to supplement nearly every essential nutrient and several metabolically active, non-essential compounds specifically for ASD, underlying causes for poor digestion, constipation, diarrhea, reflux, intestinal inflammation, or deficiencies should be assessed and treated before using supplements or diet restrictions (56,57,60). Overlooking this sequential analysis and treatment of clinical findings will in my experience impede progress with gluten and casein restriction and/or minimize efficacy of supplements that may be warranted. Stool analysis may reveal treatable overgrowth of detrimental gut flora such as Klebsiella, Clostridia, Bacillus, Blastocystitis, parasites, Candida parapsilosis, C. albicans, or others. These are potential sources of gut tissue injury and inflammation; they may also usurp valuable nutrients from the host and excrete organic acids capable of central nervous system effects (82).

Beneficial effects have been noted with antibiotics (21) and anecdotally with antifungal medications used to rid the intestine of these microbes (60), but regression is common when medication is discontinued. Parent feedback to me following antifungal treatment has included increased alertness and language, improved bowel habits, increased calmness and happiness, leaps in potty training, and lessened rigidity in food choices.

Clinical signs of poor gut function have led to the study of secretin as a therapeutic agent for ASD (83). Secretin is released from duodenal cells upon contact with chyme and elicits release of digestive juices from the pancreas. ASD children may not release adequate secretin, due possibly to insufficient acidity of chyme or to other underlying disease. When secretin is administered during endoscopy, a dramatic "gush" of pancreatic juices - larger in volume than typically expected - has been observed in ASD children (83,84), which has led some to postulate that the pancreas is starved for secretin in ASD and compensates with increased receptor sites for this hormone.

Porcine secretin is infused typically in a series of 5-8 treatments, depending on a child’s response, at 3-5 week intervals. Infusions have been anecdotally noted to elevate body temperature to a typical level (from 94oF to 98) and maintain it there for up to four weeks following infusion (59), improve bowel habits, and improve behavior and functioning in ASD children. Activation of neurons in the amygdala by secretin has also been reported (59), as has neurotransmitter activity by secretin in the cerebellum (85). The amygdala is critical for ascribing emotional value to stimuli, for comprehending facial expressions, and for allowing joint attention. Reduced activation of the amygdala in ASD has been documented (86).

Four placebo controlled studies showed statistically insignificant or no improvement from secretin infusion (87-90). These trials were limited in that they used one infusion or two rather than a series of several, and used heterogeneous patient populations with wide variations in age, gastrointestinal symptoms, and functional level. This prompted a meta-anaylsis (59,91) which pooled data from the four studies. This analysis showed a statistically significant clinical response to secretin. Larger scale, longer term trials are needed to continue informing on the therapeutic value of secretin.

Though a presumption has persisted for decades that the gastrointestinal symptoms common in autism are caused by anxiety, behavior, and mood disorders, this article presents the work of many who wonder if the reverse is true — e.g., that a disease process with distinct, treatable gastrointestinal manifestations may evolve insidiously and pervasively to create the developmental injury of autism or ASD, if neglected in infants and young children. Many strategies in nutrition care or new medical treatments which have shown therapeutic value in some ASD children are reviewed here. These require more investigation to identify potential responders and to enhance developmental outcomes for ASD children.

+ References are at:

+ http://www.redflagsweekly.com/features/converse.html

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The mission of redflagsweekly.com is to probe medical, scientific, environmental, artistic and political issues in a manner that one rarely encounters in mainstream news reports. Corporate bottom lines and inadequate training in specialty journalism often provide the reading, viewing and listening public with narrow and simplistic information.

Press release journalism in medicine, for example, a process that often involves aggressive PR firms in the service of powerful corporations, hospitals and medical journals, typically rules the roost. It is the path of least resistance.

The "dumb it down" gang is all too often in control.

There also is a high degree of censorship in the news of those views that challenge the established viewpoints in science. Some scientists even seem preoccupied with efforts to discourage debates about important issues that affect many lives.

Our culture's artistic life is also heavily influenced by the ever-growing concentration of corporate power and huge PR campaigns.

This site will raise "red flags" or issues that require public attention and debate. Nicholas Regush, formerly a producer for ABC World News Tonight and columnist at ABCNews.com, is currently Editor-in-Chief of RedFlagsWeekly.com and can be reached at nicholasregush@redflagsweekly.com

 

 

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They May Be Right To Be Wary

http://www.thisisnottingham.co.uk/displayNode.jsp?nodeId=66030&command=displ

ayContent&sourceNode=65582&contentPK=1381064

Doubts about the safety of the MMR inoculations have been raised again - this time by one of Britain's leading autism researchers, Prof Elizabeth Newson. The former child psychologist at the University of Nottingham spoke to MARK PATTERSON

Despite government assurances about the safety of MMR jabs, more than 300 Nottingham parents have booked to give their children separate measles, mumps and rubella vaccinations at a private clinic.

And - according to one of Britain's leading experts on autism - they"re probably right to do so.

Professor Elizabeth Newson, a renowned child psychologist who worked at the University of Nottingham for 40 years, believes the MMR jab could be one causes of what she call the autism "epidemic" in Britain.

Prof Newson, who got the OBE in 1998 for her work with autistic children, says that, while around only six in every 10,000 people were diagnosed with autism 20 years ago, the figure is now around 90.

"There's definitely an epidemic of autism," she said. "And it's not explained simply by the fact that people are better diagnosed now."

Nobody knows for certain why cases of autism are rising but a growing number of experts believe "environmental" factors are probably one reason - and for Prof Newson that includes the MMR jab.

The professor, who lives near Wollaton Park and helped found the Sutherland House school for autistic children in Nottingham with her husband John, also a retired child psychologist, admits she recommended that two of her own young relatives received single immunisation jabs.

"With my great-nephew and my own granddaughter I"ve said, 'Get single jabs.' It's expensive, but I'm extremely sympathetic to that."

Much to the Government's dismay, many other British parents are doing the same.

As reported in the Post, the private Wellcare Clinic in Bakersfield has begun offering separate measles, mumps and rubella jabs for £210 - and it has had 300 appointments made in three weeks.

GP Dr Bal Mehat, who is carrying out the jabs at his clinic, said that while he supports the national MMR campaign, he is responding to an "overwhelming demand" for separate injections.

Figures for 2001 show the number of children receiving the MMR jab at 13 months in Notts has fallen in the last few years and is now below the national target of 95%. In Nottingham, the rate is 88% receiving the jab by the age of two. In north Notts, the rate is 85%.

Dr Richard Slack, Nottingham Health Authority consultant in communicable diseases, warned: "We are storing up problems for the future."

The controversy over the MMR jab has been simmering since February, 1998, when a team at London's Royal Free Hospital, led by Dr Andrew Wakefield, suggested there might be a link between the triple vaccination jab, bowel disorders and autism, a condition which affects social interaction and communication skills but which defies precise explanation.

Sine then, the Government has been desperately trying to reassure parents that the jab is safe. Department of Health officials have cited a mass of scientific evidence gathered by such bodies as the UK's Medical Research Council, the US Institute of Medicine Safety Review of MMR, and research papers in major medical journals.

Prof Newson points out that Dr Wakefield never suggested the MMR jab was the sole cause of autism. What he said was that the combination of three virus strains being introduced into the body may overload the immune system in some children, causing intestinal problems which can then lead to autism.

"For the vast majority of children the MMR vaccine is fine," he said. "But I believe there are sufficient anxieties for a case to be made to administer the three vaccinations separately."

Dr Wakefield is not alone in his thinking. Scientists in the USA and at the University of Sunderland's autism research unit are now working on theories that autism is primarily a metabolic, not a psychological problem.

The broad idea is that autism sometimes develops in children whose stomach linings become leaky, which allows higher-than-normal levels of certain chemicals to enter the brain. This alters brain chemistry to create autistic people's distinctive impairments in perception and communication.

If the MMR jab is one of the causes of 'leaky stomach syndrome' it could also be a cause of autism.

However, Prof Newson says there is probably a genetic basis to autism as well. "It's not exactly that some children are inherently autistic, but that they are inherently vulnerable. A person might not be autistic, but he has got that vulnerability to something like the MMR jab."

She admits the prospect of a child dying or being seriously ill because they do not have the MMR jab rightly terrifies parents. "But that isn't a reason to say the MMR jab is safe."

Years ago, she explains, it was rare for experts to come across a family with more than one autistic child. Now they are becoming increasingly common.

"A lot of parents who have one autistic child want to know about having a second child," she said. "I can't say, 'Don't worry.' The doctors are saying that, but I can't. When we started work 30 years ago you rarely came across two autistic children in a family. Now it's quite common. So where's that come from?"

So does Prof Newson think the Government is misleading the public by insisting the MMR jab is safe? "I think its advice is ill-informed. I know where they're coming from. My God, measles is dangerous and a lot of children can die or be damaged by it! But what about the family who have one autistic child who are thinking about whether to have a second child? I think there's an element of control freakery in the Government's thinking."

Researchers at the University of Sunderland's autism research unit put the dilemma of parents like this: "If MMR jab protesters are correct, the consequences for the lives of many people are extremely serious. If the protesters are incorrect and the vaccines are safe and effective, public confidence is being severely damaged unnecessarily and control of potentially lethal and disabling diseases is being jeopardised by this unquestioning attitude."

Quite how many people have developed autism in Britain is not known because there is no central register. But the National Autistic Society, which has collated the results of scientific studies of autism in Britain dating back to 1943, puts the prevalence at 91 per 10,000 people. The Department of Health admits that cases of autism are increasing, but says this trend started before the MMR jab was introduced, in 1998.

The society's position on the MMR jab is that, while it has accepted the Government's advice on its safety, it also believes further research is needed.

For Prof Newson, autism is far more than an area of professional interest.

She knows the personal challenge of autism since her own son, now grown up, was born with Asperger's Syndrome, the more able form of autism.

She will not reveal his name, but admits that his autism did place her in a painful moral position for several years.

It first arose when her son was nine and he asked his mother what autism was. "That was because I had so many books about autism and he was looking at them," she recalls. "He was interested in fact books, not stories."

Prof Newson gave a vague answer to her son's question. Then, when he was 11, he unexpectedly asked his mother not to mention his autism in public any more.

"He said, 'I don't want you to talk to people about me.' I suppose he realised that I talked in public about autism and that I probably talked to students about it. So he made the connection - 'If I'm autistic, she talks about me'."

As a loving mother, Prof Newson agreed to his request. But the pressure this placed on her was massive. Here was a child psychologist with a known expertise in autism, forced to deny she had an autistic child.

"I found this difficult because I was living a lie," she says. "I was doing a lot of work on autism in clinics and there was the research. But I stuck it out for years. He must have been 25 or so before I asked him, 'Do you mind if I mention you - because it's been so difficult for me?' Someone I knew did ask, 'Do you have an autistic child?' I said no, but I felt so awful about it. I phoned Lorna Wing (another leading autism expert) to talk about it. She said that I had to put my personal interests before my professional ones.

"But I suppose there are people who might think, 'Why didn't she mention that?' "

To what extent did her son's autism affect her professional work as a child psychologist?

"If you're a developmental psychologist you learn a lot from your own children. People who didn't know that I had a son used to say that I had a feel for autism. Of course I did. One gets a feel for it because you're dealing with it every day.

"But, interestingly enough, I have learned much more, probably, about what to do for autistic children by understanding the development of normal children. The fact is that an 11-month-old normal child is far more sophisticated than a four-year-old autistic child."

Prof Newson has retired from the University of Nottingham but is still heavily involved in work with autistic children.

She helped set up the early years diagnostic centre at Ravenshead and this month will speak at an international autism research conference in Durham.

Her latest work involved devising a way for parents to develop communication skills with autistic two to three-year-olds.

It is now recognised that autistic children can be diagnosed as early as 11 months because they do not point at objects - early evidence of a characteristic lack of empathy and social interaction.

Indeed, it was the apparent failure of Government experts to be aware of this that made her doubt their overall 'expertise' in the MMR jab debate.

So she sympathises with parents who are avoiding the triple jab because they fear they will become the parents of autistic children.

"Absolutely," she says. "I"m one of them."

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Reader's Posts

The face of autism children's sized tshirts. I originally designed these for my son to wear in public to increase awareness. It really empowered me to educate "onlookers" and I couldn't believe how many people I met that didn't know that autism doesn't "look" like a disability! www.go.to/autismtshirt

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I have a nearly 6 year old HFA boy, who will be going to Kindergarten in the fall. I hope to place him in a private school. Does anyone have experience in how to circumvent the necessity of the required child hood immunizations? My son requires still 1 MMR, 1 Polio, 1DTP, 1 Hep B, and 1 Varicella. We live in Southern California. Elize. [elizek@attglobal.net]

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Since moving from Georgia to North Carolina a few months ago we have encountered a state without money or consideration for our special child. She will not get Medicaid and is on a endlessly long waiting list. To top it off after being exempt in Ga. from the 5 yr. booster shots it was not accepted here. They are demanding we get the shots in 30 days or she will not be able to attend school. Anyone else in NC with these problems? Kathy Hudson jhud2@earthlink.net

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Have 12 y.o. autistic son, a neuro-typical 4 y.o. daughter, and an infant who will be 6 mos. old. The baby keeps tilting her head to the left side. My son did not have any characteristics that stood out until he was between 15 and 18 months. We are wondering if any of you saw any early signs of autism such as this in your AS children? Tterlis@aol.com

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San Francisco Bay Area (Berkeley). Desperately need a good summer day program for our 15 year old high functioning autistic son. Out of school (we refused placement) and at home for a year, he needs social contact and activities. Bright, interested in everything, What to do? Contact Tobie Shapiro at: tobie@shpilchas.net

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Has anyone had any luck getting the school to pay for an intensive service like Lindamood-Bell? My child has high-functioning autism and his low reading comprehension negatively affects all areas of academics. The school's intervention just isn't enough. Alisa.Bartz@verizon.net

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Would like to know if there are any autism/aspergers advocacy and support groups in Toronto, Ontario, Canada mandylui8@hotmail.com

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I have a 4 year old son with Asperger's Syndrome and a 2 year old son with a possible diagnosis of Sensory Integration Disorder. I live in Bellingham Wa and was wondering if anyone knew if SID is related to Autism. And where I could go to get a diagnosis or services for it. Any info would be a help. Amanda ruthruff@attbi.com

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words please. There is no charge for this service,

but posters are obligated to thank all those who take

the time to answer your ads. This is a consideration

for others with autism after you and yours, who seek

assistance from appreciated readers. Send submissions to:

POSTING@FEAT.ORG

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

"The Power of ONE! I.D.E.A."

FREE and OPEN TO THE PUBLIC

www.unlockingautism.org

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information. Thank you.

FEAT is a tax-exempt non-profit corporation

_________________________________________________________________

Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org Michelle Guppy

Server: Michael McIntire • Ron Sleith • Kay Stammers • Edward Decelie

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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.