Select Committee on Health Minutes of Evidence


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  The Department has quoted one unpublished study:

    "Unpublished data suggest that the apparent rise in autism in the UK began more than ten years before the introduction of MMR and showed no change when the vaccine was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also continues to place its faith in other studies, almost invariably undertaken abroad and usually ten or twenty years out of date, producing a "no link" conclusion from studies of very small numbers of cases.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 Tessa Jowell:

    "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 1988".

  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 earlier?

    —  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 Society

  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), Kanners—5,200;

    —  as above but classified as Other Spectrum Disorder—21,000;

    —  children with average or high ability (with IQ 70 or above), Asperger's—47,400; and

    —  as above but classified Other Spectrum Disorders—46,000.

  (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 incidence.

Targets

  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 occurs?

    —  why are there no targets to reduce autism?

  119.  Suggested Recommendations For Action:

    —  formally monitor autism at Departmental level;

    —  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 sources; and

    —  actively investigate causes, and set formal targets to reduce autism.

MONITORING AUTISM AT THE LOCAL LEVEL

Introduction

  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 for leadership.

  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 Society);

    —  recorded incidence of 1 in 333 (Bexley);

    —  recorded incidence between 1 in 333-500 (West Kent);

    —  recorded incidence 1 in 388 (West Somerset);

    —  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 section.

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 Health Authority)

    "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 Health Authority.)

  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 rate upwards.)

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 children).

    "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 in 500.)

    "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 312.

  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 **):

Kanner's Criteria

      Lotter, 1966, 1967, Middlesex—1 in 2,222

      @Brask, 1972, Aarhus, Denmark—1 in 2,326*

      Wing & Gould, 1979, Camberwell, London—1 in 2,041

      Hoshino et al, 1982, Fukushima-ken, Japan—1 in 2,000

Rutter's Criteria

      Bohman et al, 1983, Vasterbotten, Sweden—1 in 1,786

      Cialdella and Mamelle, 1989, Rhone—1 in 926

DSM-III Criteria

      Matsuishi et al, 1987, Kurume, Japan—1 in 645**

      Tanoue et al, 1988, Ibaraki, Japan—1 in 725**

      Sugiyania & Abe, 1989, Nagoya, Japan—1 in 769**

      Burd et al, 1987, North Dakota—1 in 3,030

      Ritvo et al, 1989, Utah—1 in 2,500*

      Gillberg, 1984, Goteborg region, Sweden—1 in 2,500*

      Steffenburg & Gillberg, 1986, Goteborg City—1 in 1,333

DSM-III-R Criteria

      Bryson et al, 1988, Nova Scotia—1 in 990

      Gillberg et al, 1991, Goteborg City—1 in 869

Other Criteria

      Ishii & Takahashi, 1983, Toyota, Japan—1 in 625**.

  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 studies.

  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 match California.

  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.


 
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