Autism

 

The following is submitted to the MRC review of autism:

 

A.   Autism & Autistic Enterocolitis

 

1.   It is suggested that there is a strong case to

 

Ÿ         Identify to what extent autism has increased, and whether the increases are largely down to a sharp rise in late-onset degenerative autism

 

Ÿ         Identify if this late-onset autism is the novel syndrome of autistic enterocolitis identified by the Royal Free Hospital and other researchers

 

Ÿ         Identify key research vacuums that show promise

 

Ÿ         Properly and independently investigate the alleged link between MMR and autism/autistic enterocolitis, without prejudice.

 

B.   Increases In Autism

 

1.   It is now increasingly obvious  -  despite certain protestations to the contrary  -  that there has been a major recent growth in autism in western countries, and possibly elsewhere:

 

Ÿ         Recent studies suggest a sharp increase in autism. In the UK, studies by Shattock (2000), by Scott (1999), by Kaye et al (2001) and by Fombonne et al (2001) have respectively revealed autism at eight, ten, seven and four times their previously-anticipated rates (the Fombonne study revealed a tenfold-higher rate if milder conditions were included).

 

Ÿ         The September 2000 Scottish schools census showed a 30% increase over the 1999 figure, itself a 19% increase over the 1998 figure.

 

Ÿ         A study by Wakefield LEA pointed to an increase from 5 to 111 pupils in seven years 1992-99.

 

Ÿ         Other anecdotal data, such as lack of significant autistic adult population, pressure on school places, personal experience (never met/heard of single case, 1950-88, now have three cases living within 50 yards of home), absence of Parliamentary debate/questions pre-1990.

 

Ÿ         US data shows an increase from 12,000 to 53,000 in six years 1993-99. Some US States showed increases of several hundred per cent.

 

2.   Is it better recognition or a genuine increase?

 

Ÿ         Some of these increases are better recognition, but they are far too steep and in too short a timeframe for this to be the whole explanation, or even the main explanatory factor. This is gradually being accepted by most commentators.

 

3.   Is MMR Implicated?

 

Ÿ         It has been alleged that MMR cannot be causing autism, because increases in autism pre-date the introduction of MMR into the UK. However, this assertion is grossly over-simplistic and almost certainly false. Autism could have already been increasing for non-MMR reasons, with MMR then further accentuating the increase.

Ÿ         Also, doubt over the figures on autism, changes in diagnostic practice and delays in diagnosis make reliance on figures alone as “proof” of absence of a link extremely unwise (suggestive of wishful thinking).

 

C.   Autistic Enterocolitis  -  A Novel Syndrome

 

1.   Several key aspects stand out:

 

Ÿ         The children who allegedly became autistic after MMR, also allegedly acquired acute multiple food allergies, hyperactivity and bowel problems at or around the same time

 

Ÿ         This is obviously a pertinent issue for investigation, yet has been largely disregarded by the Department of Health and many researchers/commentators.

 

Ÿ         For many children, bowel problems are probably not formally diagnosed, even by parents, and their importance probably not recognised, due to the child’s own lack of speech and continuing incontinence. Some food allergy problems will also go unrecognised, and their importance will not be appreciated.

 

2.   Data on these potentially-associated conditions:

 

Ÿ         Data on these potentially-associated conditions in the GP database is likely to be extremely poor, and this may go on to confound studies based upon interrogation of the database.

 

Ÿ         affected children developed normally and then dramatically regressed. This is a novel variant of autism. In the past, many cases showed autistic/delayed features by age one year. Autistic enterocolitis cases appear to differ markedly, with all cases featuring normal development then degeneration well beyond this age, suggesting a novel form of autism.

 

Ÿ         The proportion comprising this “late-onset” autism may have increased very significantly, but studies to date have not properly differentiated between the two variants. There is therefore a fundamental data vacuum on this vital aspect.

 

3.   Time delays between immunisation, onset of symptoms, formal diagnosis:

 

Ÿ         Crucially, the delay between MMR and first noticed signs of autism, or first diagnosis, appears to be considerable or even very great, far greater than hitherto supposed.

 

Ÿ         The forthcoming study by Spitzer et al of 276 children points to a range of delay between MMR and first sign of autism varying from 38 days to 6.2 years. The range from MMR to first diagnosis varies from six months to 10.3 years. These findings, which mirror the representations of affected parents, would point to a length of delay that would fall very far outside the standard three weeks of safety trial follow-up.

 

Ÿ         It would also result in the connection between MMR and degeneration continuing to be missed, by some parents, by many paediatricians, and probably by all child health databases.

 

D.   Research “Disproving” A Link Between MMR/Autism

 

1.   Studies that “disprove” a link with MMR:

 

Ÿ         A large number of studies have recently been completed in the US and UK that purport to show that there is no link between MMR and autism.

 

Ÿ         However, some of these studies have been very poorly designed, or have tested a weak and questionable hypothesis, such as whether autism would show up in increased visits to GPs, and then been used to attempt to statistically “disprove” a medical condition, without any medical examination of the children who allegedly became autistic after MMR, or even medical examination of any children in the studies involved.

 

Ÿ         The length of delay in degeneration outlined above has not been understood.

 

Ÿ         All these studies may therefore be very seriously flawed (a critique of most of these studies is available separately on request).

 

E.   The Research Vacuum

 

1.   There has been a historic research vacuum in key areas:

 

Ÿ         Key relevant areas of research have not been done. The most obvious action, of funding further intensive study of the preliminary findings of the Royal Free Hospital Inflammatory Bowel Disease Study Group, has been consistently sidestepped (the work is being funded by the parents themselves).

 

Ÿ         The most promising leads are not being followed up by the authorities. This in itself may be instructive, exposing an institutional bias, based upon a pro-MMR stance and an understandable anxiety not to undermine public confidence..

 

Ÿ         A review by Wakefield and Montgomery of the original safety trials of MMR has exposed that these were not adequately done. Although attempts have been made to refute this claim, Wakefield and Montgomery’s findings basically stand unchallenged. Very few children indeed were followed up for sufficiently long in safety trials, and the significance of reported gastrointestinal problems was not appreciated

 

Ÿ         The effects of vaccines administered in combination have never been properly researched.

 

2.   Thiomersal in vaccines may also play a role:

 

Ÿ         The effects of thiomersal in concert with the effects of ileal lymphoid nodular hyperplasia in the gut have not been researched.

 

Ÿ         A US CDC review of thiomersal in June 2000 supported a statistically significant, albeit weak, association between exposure to thiomersal-containing vaccines and speech delays, attention deficit disorder and other neurodevelopmental delays. It has also been separately suggested that there is a striking overlap between characteristics of mercury poisoning and of autism.

 

F.   Vaccine Adverse Reaction Reporting

 

1.   Part of the problem is that vaccine adverse event statistics may seriously misrepresent the real position.

 

Ÿ         The vaccine adverse reaction reporting system has worked in the past for acute post-vaccination reactions. But has it worked for very slow degenerative reactions that have hitherto not been connected with vaccines?

 

Ÿ         It is also known that vaccine adverse reaction reporting mechanisms are very poor. By the admission of the UK MCA/CSM, only 10-15% of even serious adverse reactions are thought to be reported. Attempts have been made to defend this  -  but the statistic is the MCA’s own, and they used the word “serious”.

 

Ÿ         This unreformed system will have completely missed gradual degeneration over months or years after MMR as a potential adverse event. The US VAERS system has similar shortcomings.

 

Ÿ         This has given MMR a good safety record in official statistics. This record may not in fact be justified.

 

2.   A key error has been to underrate the importance of what the parents  -  who know their child’s history best  -  are reporting:

 

Ÿ         The parents’ reports of degeneration after vaccination are being treated as “anecdotal”, but in fact point towards a consistent pattern.

 

Ÿ         The importance of anecdotal accounts, or of circumstantial evidence forming a consistent pattern, is being almost completely missed.

 

G.   Reviews & Investigations

 

1.   Belatedly, a number of agencies are realising that there may be a major problem. This realisation is parent-led, through political pressure, rather than safety-agency led.

 

Ÿ         Hearings are now already under way by the Government Reform Committee of the US House of Representatives as to why there are such significant increases in autism in the US.

 

Ÿ         In the UK, the Scottish Executive has launched a review, following earlier consideration by the Health Committee of the Scottish Parliament. The Health and Children’s Committee of the Dail, Republic of Ireland, has also recently held hearings.

 

Ÿ         Other reviews of the case for and against a link between MMR and autism, or to identify future areas of research, are under way. In the US, the review is continuing, led by the Institute of Medicine. In the UK, a review to identify research is being undertaken by the Medical Research Council.

 

Ÿ         There is widespread disquiet amongst parents of damaged children that reviews will again prove inconclusive, and that this inconclusivity will be misrepresented by the respective Government health departments as fresh “proof” of there being no link.

 

Ÿ         There is also concern at a lack of independence of some key participants. Some individuals appear to be effectively sitting in judgement on their earlier actions, or lack of action.

 

H.   Legal Action

 

Major class actions are under way in both the UK and the US Courts.

 

Ÿ         The UK action involves several hundred children, and is well advanced. It focuses upon MMR and autism or other forms of damage.

 

Ÿ         The US action is only just beginning, but a large number of cases are anticipated. It focuses upon a mercury-based preservative, thiomersal, used in childhood vaccines. The two issues may well prove to be interlinked..

 

Ÿ         It is therefore essential to get to the truth as to whether autism and vaccination are linked, and for investigation of a link to be totally independent from bodies with a vested professional interest in the outcome. Public confidence will not be rebuilt upon false reassurance, particularly if the children go on to win their cases.

 

J.   Some Suggested Key Questions:

 

1.    These are taken from the UK MRC workshop list of 11th July 2001, but with abbreviation or modification where necessary:

 

2.   Epidemiology working group  - 

 

(i)   Can diagnostic changes alone explain perceived increases in autism?

 

(ii)   Would a register help monitor changes in prevalence?

 

(iii)   Is the increased prevalence uniform across all variants of autism?

 

(iv)   Can autism be acquired after normal development, and if so, how?

 

3.   Physiology working group  -

 

(i)   What is the role of bowel disorders?

 

(ii)   What is the role of gut disorders/”leaky” gut?

 

(iii)   What are the linkages between the gut, the bowel and the brain?

 

(iv)   What are the linkages between these three and autism?

 

(v)   What evidence is there to implicate vaccines as a trigger?

 

(vi)   What evidence is there to implicate antibiotics as a “primer”?

 

4.   Psychology working group  -

 

(i)   Why are sleep patterns so disturbed in autistic children?

 

5.   Other key questions (all working groups)  - 

 

(i)   What systematic patterns (manifestation, timing, etc.) can be deduced from the accounts of parents?

 

6.   Lay working group  -

 

(i)   All the above questions.

 

7.   It is suggested that the above questions should form a central focus of the current review, even if only to have to acknowledge that answers are not known. Uncertainty needs to be recognised as a valid intellectual position.

 

K.   Other Points

 

1.   The confusion between the position “there is an absence of evidence” and the position “an absence of evidence equates to proof against” needs to end.

 

2.   Suspected causative factors should only be eliminated at this early stage if there is conclusive and unambiguous proof of evidence of no effect. Potential suspects such as vaccines should therefore not be seen as “innocent until proven guilty”, particularly in the absence of convincing causal studies.

 

3.   It should not be assumed that parents who question MMR, or who are taking legal action over MMR, are “anti-vaccine” campaigners. All the parents of children believed to have been damaged by MMR took their children to be vaccinated.

 

 

 

David Thrower

01925-264156

Email David@ThrowerWarrington.freeserve.co.uk

16th July 2001

 

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.