Memorandum by Mr David Thrower - continued
An Increase In Incidence Since MMR?
101. The lack of a lead from the Department
is in spite of emerging evidence that there has been a real increase
in incidence of autism (quite separate from increased diagnosis)
since the introduction of MMR. For example, there is now firm
data available (see later) to suggest that in California, autism
levels climbed sharply from the year that MMR was introduced.
102. This information is widely available,
and is known to parents in the UK. Yet the Department acts as
though it is wholly unaware of the data in California, or even
in areas within the UK (see later) where autism is now confirmed
as being found at high levels.
103. The Department has quoted one unpublished
"Unpublished data suggest that the apparent
rise in autism in the UK began more than ten years before the
introduction of MMR and showed no change when the vaccine was
introduced in 1988 (Bax M., Lawton D., Family Fund Trust, quoted
in Nicholl A. et al, BMJ 1998, 316, 715-6)" (source: letter
of 12 June 1998 to the Rt Hon Dafydd Wigley MP from the Minister
of State for Public Health).
104. However, the study has not been published,
it is clearly impossible for parents to assess its parameters,
assumptions, scale of survey or time period covered, to determine
for themselves that the study was justified in its conclusions.
No other specific evidence has been quoted to me by the Department.
The incidence of autism now being found in some parts of the UK
is considered later.
105. The Department also continues to place
its faith in other studies, almost invariably undertaken abroad
and usually ten or twenty years out of date, producing a "no
link" conclusion from studies of very small numbers of cases.
The Department gives a high profile and credibility to these studies:
"Careful studies have shown that autism
did not increase after the MMR vaccine was introduced in Sweden.
The authorities in Denmark conducted a thorough review of the
possible link between measles and autism and were unable to discover
any evidence for an association between MMR vaccine and autism.
The Department of Health continues to communicate with the National
Autistic Society and those working in the field, both in this
country and abroad" (source: letter of Department of Health
of 24 December 1996. The point that the NAS does not actually
monitor incidence is noted elsewhere).
106. The credibility of the Department's
assertions that there is no connection between vaccination and
degeneration into autism have occasionally been undermined by
its own statements to other Members of Parliament, for example
in a letter of 12 June 1998 to the Rt Hon Dafydd Wigley MP from
"It has already been pointed out to Mr Thrower
that early studies on autism (carried out before MMR vaccination
was introduced) showed that many children with autism were reported
to have developed normally and then regressed, usually in their
second year of life. The mechanism by which this occurs is
not yet known." (my emphasis).
107. There is also evidence of the Department
wanting to "have it all ways" in its quoting of "evidence"
that there is no connection between vaccination and autism. When
MMR is questioned, it points to MMR being no more than a combining
of three pre-existing separate vaccines with a "good safety
record". Yet it then quotes, as already noted above:
"Unpublished data suggest that the apparent
rise in autism in the UK began more than 10 years before the introduction
of MMR and showed no change when the vaccine was introduced in
108. The point that the Department was trying
to make is that autism did not increase when MMR was introduced.
But the questions that this statement then begs are:
what made autism increase 10 years
why isn't the Department investigating
this apparent rise?
could not the rise have been connected
with changes in the manufacture of the monovalent vaccines, and
simply have been perpetuated, at an increased rate, when the vaccines
were issued in combination, through the same process and from
the same basic cause?
does the Department recognise the
possibility that there may have been cases of degeneration even
before October 1988, as a response to monovalent measles vaccine
(as per my son)?
Departmental Quoting Of The National Autistic
109. The National Autistic Society quotes
an estimated population of autistic spectrum disorders amongst
children and young people in the UK as follows:
children with learning disabilities
(with IQ under 70), Kanners5,200;
as above but classified as Other
children with average or high ability
(with IQ 70 or above), Asperger's47,400; and
as above but classified Other Spectrum
(source: National Autistic Society Factsheet,
third revised edition, amended June 1997)
110. In a letter of 10 October 1997 to my
Member of Parliament, Helen Southworth MP, the Minister for Public
Health stated that:
"We have also been in touch with the National
Autistic Society for their view on whether there is an increase
in the incidence of autism. The NAS's view is that there is
no evidence of an increase in the incidence of autism".
(my emphasis. Source: letter from Minister of State).
111. Yet the National Autistic Society has
stated that it does not actually monitor incidence. It confirmed
in a letter of 9 April 1999, from their Scottish office in Glasgow:
"The figures the NAS use are estimated prevalence
based on epidemiological studies, and not actual incidence. So
yes, the NAS does monitor the epidemiological research that comes
out of the UK and other countries. However, we do not actively
monitor actual incidence." (my emphasis)
112. By quoting the NAS as saying "there
is no evidence of an increase", the Minister implies that
the NAS are monitoring autism incidence, which the Society by
its own admission is not. If it is not monitoring it, the statement
that "there is no evidence of an increase" is misleading,
and statistically meaningless.
113. The Department even appears to contradict
itself on the point of whether there is a clear picture on incidence:
"It has been suggested that the incidence
of autism and ASD has increased since the introduction of MMR
vaccine, particularly involving a presentation of intellectual
deficit in children who were developing normally previously. .
. .The true incidence of autism is uncertain, since the diagnostic
criteria have changed over recent years. . . ." (source:
"Dear Doctor" letter of the Chief Medical Officer, then
Sir Kenneth Calman, of 27 March 1998, page 4)
114. The Department of Health appears to
be hoping that there is no increase in incidence, and that, if
there is, it can be explained away through increased diagnosis
(the latter point is explored in a later section).
115. To summarise the above:
the Department consults the NAS and
implies there is no increase;
the NAS state categorically that
they do not monitor incidence;
the Department itself admits that
the true incidence is uncertain; and
the Department has no plans to monitor
116. Parents note that, increasingly, targets
are being set by Government as part of a strategy to deal with
specific problems, including health issues.
117. If very high rates of incidence of
autism in the range 1 in 300-400 are now being found in the UK
(see below), and overseas, it is questioned why investigation
of autism and its incidence and causes by the Department of Health
could not be accompanied by specific setting of targets for reducing
autism, to stimulate the search for a phased tackling and reduction
of this very severe condition. Parents seeking explanations as
to how their children suffered adverse outcomes to treatment want
to see such action, including the search for palliatives.
118. Issues for Discussion:
why does the Department still have
no plans to monitor autism, despite the very high incidence and
severity of the condition, together with milder conditions such
as sudden language loss and acquired learning difficulties?
why is the Department not working
with proactivity and enthusiasm alongside other Government Departments,
notably Education, over autism incidence?
how does the Department gather information
from overseas, and why does it not acknowledge "uncomfortable"
information such as the major rise in autism in California since
MMR was introduced?
why is the Department not actively
exploring how degeneration into autism and associated problems
why are there no targets to reduce
119. Suggested Recommendations For Action:
formally monitor autism at Departmental
work with Health Authorities, local
education and social services departments and the Department of
Education and Employment to assess the incidence of autism and
determine whether there is an underlying increase, and what the
reasons for this might be;
work with parents' groups, not just
the National Autistic Society but also some of the groups that
the Department has no working relationship with at present;
assemble data from outside-of-UK
actively investigate causes, and
set formal targets to reduce autism.
120. The monitoring of autism at the Health
Authority level, at least in England and possibly throughout the
UK, is chaotic, unstructured, and lacks any central co-ordination
121. Different Health Trusts and local authority
areas apparently assess incidence in different ways, preventing
any meaningful overall assessment. Estimated rates and actual
rates where locally measured vary wildly, by in some cases a factor
of 70 or 80 times.
122. Few Authorities have any accurate idea
whether incidence is increasing, but several have hard data indicating
very high levels of incidence, some believe there may have been
an underlying increase, and some are now investigating reported
rises. All are unable to separate true increased incidence from
increased diagnosis, due to the lack of past data.
123. Estimates of prevalence drawn from
literature, and actual recorded incidence from local health authority
data, varies from 1 per 25,000 (Salford and Trafford) to:
estimate of 1 per 200 (National Autistic
recorded incidence of 1 in 333 (Bexley);
recorded incidence between 1 in 333-500
recorded incidence 1 in 388 (West
recorded incidence of about 1 in
300 (West Sussex); and
estimated incidence of 1 in 328 for
children under four years in Harrow.
Further details are given below and in the next
Health Authorities with No Current Accurate Data
124. Monitoring is illustrated by the following
very recent contrasting examples. First, the health authorities
that appear to have no verified accurate current data:
"We do not have a register of people with
autism (but) we do have a disability register in Salford. We also
know from other studies that the prevalence of these disorders
is around 4 per 100,000 children." (source: Salford and Trafford
"We do not collate this information at the
Health Authority . . . Last year we collected data on all children
seen during a one-week period by the child and adolescent mental
health services in West Surrey. Of the 485 children seen, none
were diagnosed as having child autism. This is not to say that
there are no children with this condition in West Surrey, but
the fact that none were seen during the week in question confirms
our belief that this condition remains rare". (source: West
Surrey Health Authority)
"The Health Authority has no current mechanisms
to monitor the incidence of autism. In the NHS, diagnostic information
is only provided about patients admitted to hospital for inpatient
care, so this would not provide a good estimate of incidence .
. . It is therefore difficult to determine whether there has been
any real increase in incidence." (source: Ealing, Hammersmith
and Hounslow Health Authority)
Local data on the prevalence of many differing
mental health problems affecting children, including autism, was
not available. We therefore use epidemiological studies done elsewhere
to estimate the local prevalence". (source: Buckinghamhire
125. One health authority, not quoted above,
has applied two differing "textbook" rates from two
published sources to their local child population, to give an
estimated local autistic population of between 18 and 782 cases,
an estimation exercise that exposes the uselessness of this approach.
Authorities with Data and Significant Incidence
126. However, some authorities have reasonably
accurate estimates. These also confirm disturbing moderately-high
rates of incidence, based upon detailed assessments of children
in their area:
"The best estimate that we have at present
is that approximately 75 young people in Enfield and Haringey
have autism. The local authorities and health providers feel that
there has been an increase in incidence . . . Haringey Council
point out that they have high numbers of pre-school children registered
as having autistic tendencies when compared to the number of school
age children" (source: Enfield and Harringey Health Authority).
(As the local under-16 population is 102,900 approximately, the
rate of incidence using these figures would be one in 1,372. However,
this already moderately high rate could be expected to rise if
larger numbers of pre-school children are beginning to be identified,
if the latter is part of a developing trend pushing the incidence
Authorities with Data and Very High Incidence
127. The most disturbing finding, as a parent
trying to investigate his son's degeneration and also seeking
investigative action from the Department of Health, is that there
are several local health authority areas with both good date and
extremely high rates of incidence.
"A survey of autism . . . in Somerset (In
1996 by the Children's Strategic Planning Team) . . . found that
the special schools had a population of 50 to 60 children with
autism, and there were 200 in the 40 mainstream schools, with
a ratio of four boys to one girl." (source: Somerset Health
Authority). The Authority confirmed a population of under-16s
of 100,809, which would give a local autism incidence rate across
this age group of one in 388.
"Professionals have the impression they
are seeing more referrals of children with autism . . . We do
have some good data on the incidence of children with autism in
the Borough of Bexley . . . Over the last three years, 109 cases
of autism have been referred, assessed and diagnosed (and) 50
more are on the waiting list for assessment . . . the National
Autistic Society recently reviewed the literature on the incidence
of autism and suggested an incidence of one in 200 children. Taking
this incidence rate, we would expect around 250 children in Bexley
to have autism. (The) service has had around 150 referrals in
the past three years" (source: Bexley and Greenwich Health
Authority. The incidence rate in Bexley works out at one in 333
"On the basis of (current work) . . . there
would appear to be approximately 500 children in West Kent suffering
from autism . . . giving a prevalence of between two and three
children with autism per 1,000" (source: West Kent Health
Authority, 6 May 1999. This works out between one in 333 and one
"Information was provided by a survey carried
out by West Sussex Education Department which identified 427 children
up to the age of 19 with this diagnosis. The number . . . included
a sizeable group of children where the diagnosis was suspected
but where this had not been confirmed. Our child population of
0-19 year olds was calculated to be 167,061." (note: adjusting
this latter figure to match the education-age survey would give
an autism incidence rate of about 1 in 300).
128. The rates of 1 in 333, between 1 in
333 and 1 in 500, and 1 in 300, make an interesting and disturbingly
consistent comparison with a rate found in California of 1 in
129. The figures may be being distorted
by variations in precise definition, but the fact that Bexley,
Somerset, West Kent and West Sussex have hard data that indicates
an incidence that is anywhere between 50 and 83 times higher than
Salford and Trafford's literature-based estimate exposes the degree
of methodological disorder in assessing the true scale of autism.
Rates in Context of Published Studies
130. The above high estimates need to be
set against the following rates quoted by Lorna Wing in The
Definition and Prevalence of Autism: A Review, published in
European Child and Adult Psychiatry, Volume 2, issue 2,
April 1993, pages 61-74 (The four with the lowest rate of incidence
are marked * and the four with the highest rate are marked **):
Lotter, 1966, 1967, Middlesex1 in
@Brask, 1972, Aarhus, Denmark1 in
Wing & Gould, 1979, Camberwell, London1
Hoshino et al, 1982, Fukushima-ken, Japan1
Bohman et al, 1983, Vasterbotten, Sweden1
Cialdella and Mamelle, 1989, Rhone1
Matsuishi et al, 1987, Kurume, Japan1
Tanoue et al, 1988, Ibaraki, Japan1
Sugiyania & Abe, 1989, Nagoya, Japan1
Burd et al, 1987, North Dakota1 in
Ritvo et al, 1989, Utah1 in 2,500*
Gillberg, 1984, Goteborg region, Sweden1
Steffenburg & Gillberg, 1986, Goteborg
City1 in 1,333
Bryson et al, 1988, Nova Scotia1
Gillberg et al, 1991, Goteborg City1
Ishii & Takahashi, 1983, Toyota, Japan1
131. The average rate of incidence of the
four lowest-incidence studies is 1 in 2,590 approximately. The
average rate of incidence of the four highest-incidence studies
is 1 in 690 approximately, nearly four times higher than the lowest-incidence
132. Yet the rates of incidence currently
(May 1999) being quoted in Bexley and in West Sussex are 107 per
cent higher and 130 per cent higher respectively than the four
highest quoted rates above, and no less than 677 per cent and
760 per cent higher respectively when set against the four lowest-incidence
studies quoted above. The West Kent and Somerset Health Authorities'
examples offers a similar contrast.
133. There seems no reason to doubt the
figures from Bexley, West Kent, Somerset or West Sussex, the rates
of which seem to closely corroborate each other and also closely
134. Parents investigating their own child's
degeneration can only find this disturbing, and are inevitably
going to be even more determined to seek answers from the Department
of Health, so that they can set their own individual concerns
in a wider framework of available factual knowledge. Yet the Department
behaves as though it is not in possession of the information that
parents are obtaining.