1. MMR and Late-Onset Autism -(Autistic Enterocolitis)

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1. MMR and Late-Onset Autism -(Autistic Enterocolitis)

A Briefing Note by Thrower

[ Thrower (@...) pulls his

notes together to come up with a useful overview of the vaccine-autism

debate. It is presented here divided over four postings, this being the

first. Because of size constraints, the last for parts were left off.

These are Part G - Flawed UK Regulatory and Monitoring Systems, Part H -

Various Experiences Elsewhere, Part J - Political Initiatives, Part K -

Recent & Coming Events. The entire document can be found at

http://www.whale.to/vaccine/thrower11.html. This analysis and conclusion are

not necessarily those of FEAT. (A little red flag goes up when I see the

hyperbolic " absolutely " used in the context of science, especially

autism.) -LS]

Part A - Introduction

1. Summary

This note sets out, in some detail, the concerns of parents whose

children have become autistic after MMR or measles-containing vaccines.

It does not attempt to cover all the available scientific literature,

but it reviews a number of recent or frequently-quoted studies.

It finds that there are studies that clearly point to MMR causing

late-onset autism (or " autistic enterocolitis " ) in significant numbers of

children.

More importantly still, it finds that there are absolutely no other

credible explanations for these children’s conditions, and that there has

not been a single credible study that can refute the claims of the parents

that their children’s autism has been caused by MMR or elated vaccines.

It also investigates some of the surrounding issues - the numbers of

children affected, whether there has been an increase, the flawed regulatory

regime governing MMR and the failure to properly monitor adverse reactions.

It also highlights the lack of independent public scrutiny of much of

the UK immunisation programme, and of those who are employed within public

bodies to oversee it.

2. What Is Late-Onset Autism/Autistic Enterocolitis?

Autism is not an illness in itself, so much as a manifestation of a

dysfunction in certain parts of the central nervous system, affecting

particularly language, cognitive and intellectual development and the

ability to relate to others.

The " classic " form of autism was first described by Dr. Leo Kanner.

These children were different from normally-developing children from birth.

However, a very different form of autism has now emerged, at first in

the US in the late 1970s and then in the UK in the late 1980s and onwards.

In this new-variant autism, children develop normally, passing all their

developmental milestones, and then regress into an autistic-like state. They

lose their previously-demonstrated speech, learned behaviour and social

skills. In effect, they dissolve into a state of mental impairment, of

varying severity.

This late onset of autism typically occurs at an age of between

fifteen months and two years, which is the period following receipt of MMR

vaccination.

This is described by the UK Department of Health as a coincidence of

timing. However, very significantly, older children, aged four, five or six,

have also degenerated into autism after MMR, implying that the link is not

coincidental.

Also, no cases are known to campaigning parents of any children who

have become autistic just before MMR.

The parents are also not aware of any children who missed MMR out

altogether, but still degenerated into autism around age one to two years.

This in itself is not scientific proof of a link, but it is very strongly

suggestive of a connection.

No credible alternative explanation for why a previously-healthy child

should become severely autistic has been put forward.

Undoubtedly there are other factors involved, pointing to a

predisposition of certain children to be vulnerable to damage, of varying

severity. Research is trying to pinpoint those factors.

Coinciding with the late onset of autism (or other damage - autism is

not the only manifestation of there being a problem), has come other

symptoms. These include gastrointestinal problems such as alternating bouts

of diarrhoea and constipation, chronic abdominal pains and bloating,

hyperactivity, extremely poor sleep patterns, and particular intolerances to

gluten and casein.

It is highly likely that these other elements are linked into the

biological explanatory sequence of autism, notably through the pathway of

gut damage and penetration of the blood-brain barrier.

3. The New Syndrome

This is a summary of the new syndrome of autistic enterocolitis:

In a cohort of children examined through ileocolonoscopy at the Royal

Free Hospital, London, an almost 100% incidence of ileal-lymphoid nodular

hyperplasia has been found.

This condition manifests itself as swollen lumps throughout the

intestinal tissue of autistic children. The condition is very rare in

non-autistic children.

The condition is believed to have developed in each case in the period

following MMR immunisation

Because of its swollen and hyperplasic condition, undigested toxins ,

having not been stopped by either the intestine or the liver (which can also

be damaged) are then able to attack the central nervous system

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Part B - The Parents & The Children

4. The UK Families Taking Legal Action

Estimated 850 families taking legal action in the UK under Consumer

Protection Act against MMR manufacturers Aventis Pasteur MSD, Merck and

Company, Kline Beecham and Kline & French Laboratories

Families convinced that MMR vaccination was trigger for child’s

degeneration into autism or other serious condition, including deaths.

Despite research pointing to original failure to properly conduct

safety tests on MMR, and emerging research linking MMR with autism (autistic

enterocolitis syndrome) and/or inflammatory bowel disease, UK Department of

Health and other medical institutions continue to claim that MMR is safe

This claim based upon advice of UK Committee on Safety of Medicines

and Joint Committee on Vaccination and Immunisation - both of which would

suffer a catastrophic loss of public confidence, should such a link emerge -

and a number of studies, all of which have severe weaknesses or inconclusive

outcomes. Details in text.

5. The Parents Have Seen What They’ve Seen

Vaccines have saved millions of lives. Parents not anti-vaccination in

principle. Parents all took children to be vaccinated. All recognise need to

protect children from diseases.

But saving lives from diseases doesn’t justify ruining significant

numbers of lives from unrecognised and unmonitored vaccine damage.

Also felt by many parents that argument that " the benefits of

vaccination outweigh the risks " has become increasingly skewed by

overstating dangers of diseases (by citing experience from poor and

underdeveloped countries, or UK experience from half a century ago), or

grossly underplaying risks from vaccination. Latter aided by extremely poor

monitoring of adverse outcomes, or by authorities refusing to accept that an

adverse outcome was result of vaccine (= " cooking the numbers " ).

All affected parents are in privileged position of having watched

child degenerate. Powerful experience. Other parents report same experience.

Usually gradual degeneration over many weeks and months, not acute

event. More like eg onset of cancer than the rare acute reactions to

vaccines seen in the past.

Onset of gut/bowel problems and hyperactivity have accompanied onset

of autism. Clearly these are connected with each other. Wakefield

investigated bowel problems - and found autism. Concept of a link is

therefore obvious, even without detailed research.

An anecdote is an anecdote. A pattern is much more powerful. What we

have a consistent detailed pattern of reports from parents. UK Department of

Health (DoH) doesn’t appear to recognise difference.

Likely that very few of the medical establishment spokespersons,

commentators etc. have examined even single example of affected children,

talked to the parents, or checked child’s records. Doubtful if most have

even read any of the research available (as opposed to the DoH’s press

releases and other second-hand material)

6. The Financial Costs - Autism Is Costing Billions

Quite apart from the immense social costs of autism, there are the

huge financial costs. Autism effects every UK taxpayer. The costs comprise:

* Health costs - specialist hospital visits, GP visits, prescriptions,

exclusion diet costs

* Education costs - special schools, extra teachers, extra teaching

assistants, extra training

* Transport costs - taxis plus drivers and escorts, plus local

authority management costs

* Social Services costs - respite care costs, transport, management,

inspection, reviews

* Loss of earnings of parents acting as carers

* Social Security costs - carers allowances, disability living

allowances

* Inland Revenue costs - loss of earnings of parent, loss of revenues

from child when he/she reaches earning age

* Wider economic costs - loss of GDP

In June 2000 a study for the Mental Health Foundation found that the

annual costs of autistic disorder in the UK were at least £1 billion, and

that individual lifetime costs per child affected could run to £2.94

million.

Part C - Autism Numbers

7. Failure To Monitor Increases In Autism Numbers

Not just better recognition. Where data is available, increases are

too steep, in far too short a timescale. These children wouldn’t all have

been missed by their parents, doctors and teachers in the past

Undoubtedly some better recognition and reclassification, following

introduction of ICD-10 criteria in 1992 (international classification of

diseases/disorders) and DSM-IV in 1995 (diagnostic statistics manual).

DoH has failed to monitor autism, and is still failing to (despite

1997 recommendation of Westminster Health Committee). Afraid of what it

might find?

Health Boards/Authorities are also failing to monitor. Health

Boards/Authorities have little clue, and no consistent approach. Very few

have any data at all. Only 1 in 6 has any figures (despite 1997 HoC

Backbench Health Committee recommendation that DoH collate centrally.), and

some of these are wrong.

Better data in Education, also ish schools census (1999 census

showed 18% increase over 1998 census).

Official figures vary wildly, by factor of 300-fold, i.e. 300-times

(not 300%). Data is extraordinary mess.

Little attempt being made to remedy. DoH clearly dragging feet over

improving data monitoring. DoH also very keen to explain-away increases

through better recognition (= self-comfort explanation).

Other indications of real increases: Kaye et al paper (see later)

found sevenfold increase 1988-99 in UK. Also unpublished 1999 paper by Dr.

Fiona , Autism Research Unit, Cambridge, indicated autism at eleven

times the expected level (1 in 174) - see later.

Some paediatricians convinced of new type of autism/real increases,

but reluctant to go on the record. Other commentators agree, eg education

professionals etc.

8. " Now Almost Everyone Knows Someone Who’s Autistic "

Autism was very rare condition, but now almost commonplace. Very many

cases now late-onset, whereas almost all used to be from birth. We have to

ask why this is.

Strongly believe new phenomena, autistic enterocolitis. Not the autism

of the past.

Evidence of dramatic rates/ increases

examples - East Surrey 1/69 rate amongst three year old boys, 1/139

rate amongst three year old boys+girls combined (source: letter of 10/6/99

from Caroline , Commissioning Manager, Learning Disability Services,

East Surrey Health Authority, tel 01372 731073, to Thrower)

Bromley Autistic Trust figures show 1990-94 increase of 280% over

1980-84 figure (source: letter of 16/9/99 from Miss CM Povey, Services

Director, Bromley Autistic Trust, to Thrower)

Wakefield LEA autism pupils up from 5 to 111 in seven years (source:

survey by Brown, a specially-seconded headmaster from the Park School,

Wakefield, on behalf of Wakefield Local Education Authority, 1999)

Telford health data up from 4 new cases per year in 1990 to 17 per

year 1998 and again 1999 (source: letter of 20/11/00 by Dr FRJ Hinde,

Consultant Paediatrician, Princess Royal Hospital, Telford, tel 01952

641222, to Thrower

ish schools census up 18% in one year (source: ish Annual

School Censuses, available from ish Education Office, tel 0131 556

8400)

Potentially very significant that Shetland children were all age 12 or

under (in 1999), ie post-date MMR introduction. Total of 13 cases (source:

Mrs Gena Garson, Board Secretary, Shetland Health Board, tel 01595 696767,

in letter of 10/2/00 to Thrower). Understand Western Isles & Highland

is similar (contact parent doing ish numbers research, Bill Welsh, 0141

638 2859).

9. Cambridge University Research

On 18/2/01, the UK " Sunday Telegraph " reported on research undertaken

by Dr. Fiona at the Autism Research Centre at the University of

Cambridge. The research, undertaken across schools in Cambridgeshire, found

that:

* One in 175 (58/10,000) children was autistic, whereas previous

studies had pointed to a rate of 5/10,000

* Extrapolated across the UK, that would imply 30,000 primary school

(age 5-11) children with autism

* The costs of education and care for sufferers could be as high as £5

BILLION per year, year after year.

* The figures were described as " if anything an under-estimate " . They

included only children with definite clinical diagnosis. Any child who had

only been " statemented " (= educational needs-assessed) as autistic, but not

yet clinically diagnosed, was not counted

One in eight children with special educational needs was suffering

from some form of autistic spectrum disorder

The eleven-fold increase of actual numbers over previously-assumed

numbers would have enormous cost implications for Government

A year-2000 report for the UK Mental Health Foundation by Professor

Knapp for the UK Institute of Psychiatry used the earlier " textbook "

rate of autism of 5/10,000 to put the total UK economic cost of autism at

£1bn. The Knapp report estimated the lifetime cost of a severely-affected

child at £3m, for a high-functioning autism child at £0.8m, and for an

Asperger’s syndrome child at £0.5m. The revised £5bn per year estimate is

based upon these costs.

10. University of Sunderland Research

A study to be published in April 2001 will show a tenfold increase in

diagnosis of autism, during the years 1989-93.

11. National Autistic Society Estimates

The NAS issued a factsheet in early 1997 which gave the following

prevalence rates:

People with Kanner syndrome (IQ less than 70) 5/10,000, or 1 in 2,000

Other spectrum disorders (IQ less than 70) 15/10,000, or 1 in 666

Asperger’s (IQ 70 or above) 36/10,000, or 1 in 278

Other spectrum disorders (IQ 70 or above) 35/10,000, or 1 in 286

Combined total of above four groups 91/10,000, or 1 in 110

The above implies a very high level of autism in the UK, and the

previously-described studies seem to bear this out.

12. Is Autism Increasing? - The Department of Health’s View

" There is no good evidence that the frequency of autism has increased

since the introduction of MMR " - Tessa Jowell, Minister for Public Health

Oct 1997 (in letter to Thrower)

" The true incidence of autism is uncertain " - Calman, Chief

Medical Officer, March 1998

The apparent rise in autism in the UK began more than ten years before

the introduction of MMR " - Tessa Jowell, in June 1998

" Rates of autism are rising, but not because of MMR " (Committee on

Safety of Medicines, June 1999)

" There is no robust data on the prevalence of autism before and after

MMR’s introduction " - Brent , June 1999 study

" Numbers of cases of autism are rising, but the reason for this is

unclear " - Hutton, Minister for Public Health, December 2000

13. The Fombonne Paper, January 2001

At the end of January 2001, a paper, " Is There An Epidemic of Autism? "

was published by Dr. Fombonne, of the Medical Research Council Child

Psychiatry Unit and Institute of Psychiatry, Denmark Hill, London, in the

journal Paediatrics. The paper sought to deny that autism had really

increased, and criticised the " poor research methodology " of Dr.

Wakefield, and said " There is no need to raise false alarms on putative

epidemics nor to practice poor science..... "

Fombonne criticises the California increase on the basis of

in-migration, possible changes within the population make-up, the change

from DSM-III to DSM-IIIR in 1987, the introduction of diagnostic categories

for Asperger, Rett and childhood disintegrative disorder in DSM-IV in 1994,

the effects of earlier diagnosis adding to the totals, and other factors.

His most useful conclusion is that " we simply lack good data " . He

raises doubt about the apparent epidemic, but is then unable to refute it.

In an excellent FEAT (parents’ group) critique (8th Feb 2001), Mark

Blaxil goes carefully through Fombonne’s previous work and argues that

Fombonne has now become confused and inconsistent. He points out key flaws

in Fombonne’s previous work, and criticises his inconsequential criticisms

of the California data, his " counsel of complacency " and his

scientifically-unsupported assertions.

Continued next posting

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