FEAT DAILY NEWSLETTER Sacramento, California
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"Healing Autism: No Finer a Cause on the Planet"
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April 2, 2002 Autism Database Search
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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, Retts disorder, Childhood Disintegrative Disorder, Aspergers
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 childs 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 dont completely remove gluten and
casein, dont use a long enough trial, dont 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 childs 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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* * *
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."
* * *
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
******
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]
******
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
******
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
******
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
******
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
******
Would like to know if there are any autism/aspergers advocacy and support
groups in Toronto, Ontario, Canada mandylui8@hotmail.com
******
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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APRIL 21, 2002 - 12 Noon to 5pm
THIRD NATIONAL AUTISM AWARENESS RALLY:
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