Other Current Health Authority Studies

  135.  Other health authorities that are known to be actively studying the incidence of autism, and investigating reported increases in most cases, include:

—  Bromley (results expected summer 1999).

—  Cornwall and The Isles of Scilly (results autumn 1999).

—  Hillingdon (results expected shortly).

—  Norfolk (results expected shortly).

—  North Cheshire/South Cheshire (joint study; results not expected for some time).

  136.  Other authorities with some data available include North and East Devon, North Yorkshire, Portsmouth and South East Hampshire, Somerset and West Kent. Further details are still being sought. The results of all these studies will be brought to the attention of the Health Committee. Full acknowledgement is given to the assistance of each Health Authority concerned. It is clear that at least some authorities are endeavouring to fill the "initiative vacuum" left by the Department of Health.

Childrens' Act Register and Learning Disability Register

  137.  One Health Authority (Lincolnshire) has candidly admitted that it does not have systems in place at present for monitoring the incidence of autism, but has stated that the Children's Act Register and the revised Learning Disability Register should now begin to address this (letter of 11 May 1999).

  138.  It is also expected that, in about five years' time, data may potentially become capable of being extracted from the proposed National Health Surveillance Network. However, it is not clear that this will happen in practise, and that it will not be blocked by the Department on the basis of alleged "classification difficulties".

An Example of Good Estimating—Autism in Harrow

  139.  Encouraging detailed local assessment of incidence, as part of a clear structured analysis led centrally by the Department of Health, is a central part of investigating the allegations of parents that their child became autistic after vaccination.

  140.  An example of a Health Authority where a determined attempt has been made to obtain data on autism incidence is Harrow. The example is set out in some detail here, in the context of the Committee's Inquiry, because the case demonstrates that there are problems in assembling data on incidence, but also that these problems can, with an effort, be confronted by the authorities.

  141.  The example exposes the Department of Health's arguments, as to why the Department cannot confront the issue of whether there has been an increase in autism post-MMR, as largely a fallacy.

  The Harrow study, "A Report on the Needs of Autistic Spectrum Children and Adults and Their Families in Harrow", Simon Jarrett, National Autistic Society 1998, produced for Brent and Harrow Health Authority and Harrow Social Services, acknowledges that until a detailed counting exercise is carried out, it is impossible to confirm nationally-based prevalence rates.

  142.  The study quotes "national prevalence" rates at 4.5 per 10,000 (1 in 2,222) classic autism and 26 per 10,000 (1 in 385) other autistic spectrum including Asperger's. These two rates offer a combined incidence of one in 328, virtually identical to the California rate discussed later, and very close to several other UK rates where hard local data has been assembled. The source of the "national prevalence" rates, which are very high compared with rates quoted in past published literature, is assumed to be the NAS itself.

  143.  But the study does confirm that there are indicators that enable accurate estimations to be made. This begs two immediate questions:

—  why does the Department not initiate a proper assessment, creating a full autism database, as recommended by the Health Committee?

—  in the meantime, why does the Department not work with health authorities such as Harrow to identify and refine the indicators of incidence, to enable a refined and better-informed estimate of prevalence to be established in the meantime, that could be used by all Health Authorities and the Department itself?

  144.  The Harrow report also notes that the Social Services Department has a learning disability register, but that this register does not include:

—  the under-fives;

—  children with Asperger's, unless they have significant other problems;

—  children with a degree of autism that still allows them to function in a moderate learning difficulty setting;

—  children in mainstream schools; and

—  children whose referral to the learning disability team has been turned down.

  145.  The Harrow report notes that there appears to be a sharply rising incidence in autism at the lower end of the age range, but then seeks to explain this as being due to factors such as reduced therapy services with increased age. It also takes the view that the highest rates of prevalence it has found, for the youngest children, can then be applied across the board to all age ranges, but there is no actual local autism census available to back up this claim.

  146.  The estimated prevalence rates found as a result of the Harrow study are quoted as close to or in excess of 1 in 328 for children aged 0 to four, and 1 in 418 for children aged five to nine. The report also notes that:

"Both parents and professionals . . . were virtually unanimous in talking about the high numbers of children with an autistic diagnosis passing through the system . . . The unanimity of this view suggests that there is some substance to it . . . Others maintained that numbers were rising across the country, and that they had discussed this with colleagues at conferences." (my emphasis)

  147.  On the argument that rising numbers are due to better diagnosis, a view expressed by the Department of Health and some health authorities, the report stated unequivocally that:

"Most professionals felt that these factors might account for a small increase in numbers, but are not an explanation for the general perceived increase."

  148.  In other words, the view is that there is a real underlying increase in incidence.

  149.  Mapping of membership of the National Autistic Society in Harrow has revealed clusters of cases in West Harrow/Rayners Lane, in North Harrow, and in Stanmore. The report noted that the existence of clusters was acknowledged by local professionals, that some GP practises had far higher numbers on their caseload than others, and that clustering had been reported elsewhere in the UK. It again noted the need for a "proper counting exercise" to be undertaken to shed more light on this.

  150.  The report concludes:

"It is imperative that a counting exercise is carried out to establish as precisely as possible the numbers and types of autistic spectrum disorders . . . with background on age, ethnic group, geographical location etc. Once a database is established it should be maintained and updated to give reliable information on incidence and trends"

A Parallel Case Study—Autism In California

  151.  Parents investigating the cases of their children are also well aware of parallel events elsewhere, for example in the United States.

  152.  In the US, a number of autism research and parents' organisations called in April 1999 for independent scientific research into whether increased vaccination in early childhood is a contributingco-factor to the development of autism. The background to this call, which mirrors the call of Professor Sir John Pattison in the UK in March 1998, is the apparent rising tide of autism.

  153.  According to the California State Department of Developmental Services, in 1998 there were 1,685 new cases of children diagnosed with autism, giving an incidence rate of 1 in 312 (offering comparison with 1 in 333 in Bexley, London). The figures include more than 13,500 children aged 0-3 in the State's Early Start Program yet to be diagnosed, most of whom present with language and developmental delays.

  154.  Autism as a percentage of the total client population served by California's regional centres nearly doubled between 1987 and 1998, with the most significant increases seen in young children less than nine years old.

  155.  Hitherto, it had been widely accepted that between two to five cases of autism occur per 10,000 live births. Based on these estimates, only between 1 in 5,000 and 1 in 2,000 births in California should eventually be diagnosed with autism, instead of the 1 in 312 which actually occurred in 1998. The California State DDS report stated that:

"The number of persons entering the system with autism has increased dramatically over the past 11 years relative to the other three developmental disabilities (cerebral palsy, epilepsy and mental retardation).

  156.  It is worth emphasising that the concerns of parents in the UK, expressed earlier, are mirrored by those of professionals and parents in the United States:

"There has been no concerted national effort to determine the actual incidence of autism. . . . The most frequently quoted incidence figure, based on large scale surveys in the United States and in England, is 4.5 per 10,000 . . . (or 1 in 2,222) . . . not including other spectrum disorders." (quoted source: "A Report to the Legislature: Changes In The Population of Persons With Autism And Pervasive Developmental Disorders In California's Developmental Services System, 1987-98", Department of Developmental Services, California Health & Human Services Agency, Sacramento, 1 March 1999, section IV, Rates of Occurrence, page 5)

"Presently the CDC admits to an estimated autism incidence of 1 in 500 (contrasted with an earlier estimate of 1 in 10,000). The actual incidence is suspected by the autism community to be at least this high, perhaps 1 in 200, and to be increasing exponentially". (source: Laura J. Ruede, parent, Fort Worth, Texas)

  157.  The Assessment Evaluation and Support Unit of the California Department of Education's Special Education Division gave the following statement about increases in the numbers of special education students with autism.

"We first started collecting enrolments counts on autism the 1992-93 school year. On 1 April 1993 there were 2,157 students (out of a total of 540,472) reported . . . . (to have autism). Five years later, on 1 April 1998, there were 8,084 students (out of 632,238) reported".

  158.  In other words, incidence of registered autism in enrolment registers has increased in California, using consistent diagnostic criteria and using the same local health professionals, from 1 in 251 to 1 in 78 in only five years, a rise of 222 per cent.

  159.  Other parts of the United States report steep rises. The Illinois State Board of Education lists figures for the incidence of autism, rising from 317 in 1991 to 2,305 in 1997, a rise of 627 per cent in six years.

  160.  The above is quoted at some length because it underpins the view of UK parents that their children may be part of a wider international health problem, connected with vaccines that are manufactured and distributed by multinational companies, the recognition of which is being resisted by the Department of Health, and its overseas counterparts.

  161.  However, the UK Department of Health portrays a wholly different view of MMR and autism in the United States:

"Millions of children have received the MMR vaccine in other countries, such as Finland and the United States, prior to its introduction in the UK. No serious long-term complications have been identified". (My emphasis. Source: letter of 19 March 1998 from UK Department of Health Immunisation and Communicable Disease Branch).

  162.  The UK Department's letter may reflect the previously-expressed views of the US CDC, but clearly does not acknowledge the fact that these views are in complete contrast to the current views of many US parents nor does it acknowledge the major problem being experienced in at least parts of the US in terms of autism incidence.

DfEE Statistics—Another Source of Data?

  163.  Although the Health Committee's inquiry is focused upon issues of health rather than education, the Department of Education (for England) and its equivalents could in theory provide valuable information to enable the monitoring of health trends.

  164.  One way of parents trying to investigate their child's degeneration is to look at the statistics maintained by the Department of Education on statements for children with special educational needs. However, again the picture is one of variation between active action (Scotland) and apparent policy disinterest (England).

  165.  The position in England is revealed through the following quotes:

"The Department still does not break down the numbers of children being statemented with special educational needs by type of special need . . . Statementing practice varies widely across the country, making collection of comparable statistics extremely difficult . . . (We have) previously discussed theories to explain the increase in the number of statements in recent years. There has been no scientific research into the reasons behind the increases" (letter of DfEE of 18 February 1999, my emphasis).

"The increase in the number of pupils with statements is a matter of concern for the DfEE . . . There has been a steep increase in recent years . . . It is not possible to say why there has been such a huge increase in statements . . . The Department has not made any investigations in the past as to exactly what is driving these numbers upwards." (letter of DfEE of 30 April 1998, my emphasis.

"The number of pupils with statements rose from 153,228 in 1991 to 232,995 in 1995 (England only). It is not possible to say whether the increase in statements has been due to a rise in the numbers of one particular type of special need, such as severe learning difficulties . . . With regard to autism, a 1997 Health Select Committee Report said that no data is collected centrally by the DoH giving information on the number of pupils diagnosed as having spectrum disorders. The report recommended that the DoH should take the necessary steps to redress this" (letter of DfEE of 14 April 1999, again my emphasis).

(Footnote: the Department of Health has, as already noted, refused to do this. A postscript to this correspondence is that the updated figure for statements, England only, climbed further in 1998, to 242,294).

  166.  In connection with the 58 per cent figure quoted above, it is also interesting to note that the number of children with statements in Northern Ireland increased by 60 per cent between 1990 and 1997 (source: Special Education Branch, Department of Education Northern Ireland, letter of 18 March 1999). The figures for Scotland and for Wales are being sought but have not yet been obtained.

  167.  The two increases quoted must beg obvious questions in relation to whether the incidence of learning disability is being better recognised, or whether the statementing system itself is being more proactively used by parents, or whether there is an underlying health problem, or a combination of these three factors.

  168.  The Department of Education quotes the Warnock Report as reason for not breaking-down total national (England) figures for learning disability or statementing into categories that might give an insight into the incidence of autism amongst school age children. The position was updated in a letter of 19 May 1999 to Lord Clement-Jones from the Minister of State, Baroness Blackstone:

"The Warnock Committee recommendation which led the Department to discontinue collecting statistical data on pupils by "type" was that recommending abolition of statutory categorisation of handicapped pupils . . . The Warnock Committee did recommend a feasibility study into the use of a more complex grid approach for collecting data. Its purpose would be to measure numbers of children with different combinations of special educational needs and numbers with particular degrees of any given special educational need . . ." (source: Lord Clement-Jones).

  169.  As the numbers of children, including children with autism, that have been statemented has grown in the past seven years by 58 per cent, this refusal to investigate the underlying causes of any increase in statements, or even to categorise the figures into broad areas of disability, seems incomprehensible to parents trying to investigate whether the condition that they suspect their child has degenerated into is part of a wider syndrome, and whether the level of incidence of that syndrome has recently increased or not.

  170.  A wholly different approach has been taken in Scotland, where specific questions on number of autistic pupils, broken down by junior/senior school and by sex, were included in the September 1998 Scottish schools census. The results were anticipated to be available by mid-1999 (source: Scottish Office Education and Industry Department), and will be passed to the Committee in time for its Inquiry.

  171.  This difference of approach appears inexplicable to parents trying to understand whether their child's condition is part of a wider national/international health problem. The approach taken in Scotland is referred to by Baroness Blackstone:

"The Scottish education system does of course differ in significant respects . . . there is no reason why each country should collect identical statistics. We are not convinced that a list akin to that introduced in Scotland would give sufficiently useful information to merit our introducing it . . . It is unclear how data on local incidence of autism would assist in policy decisions . . ."

  172.  The above explanation appears unconvincing in the extreme. Baroness Blackstone has, however, put forward a positive suggestion:

"The regional groupings of local education authorities which we are promoting . . . will be piloting the collection of data on incidence of particular needs. We shall be looking at their experience, and whether we can build on it to put together meaningful statistics at national level."

  173.  Key Conclusions—It is extraordinary and wholly inexplicable that the Department of Health has failed to properly monitor the incidence of autism and associated disorders, despite having already been urged by the Health Committee to do so.

  174.  It is even more extraordinary that they have no future plans to do so, nor are they actively encouraging by example the monitoring of autism at the local level. This failure cannot be helpful to parents investigating their child's condition, nor to central and local government planning future demand for services. Parents are sceptical as to the Department's reasons for inaction, and believe it may have ulterior motives for not investigating prevalence and causes.

  175.  The efforts of a few Health Authorities will eventually bear fruit, but the failure of the Department of Health to properly co-ordinate their efforts and use consistent criteria and mechanisms for data-gathering will limit the value of this data, by preventing it being used as building-blocks to form part of a national picture.

  176.  Many Health Authorities still seem to have no data at all, and some are using estimates based upon outdated textbooks. It seems inconceivable that autism in Bexley really is 75 times more prevalent than in Salford, and this suggests that there is a great deal of catching-up in data collection to be done by some authorities.

  177.  If the levels being found in Bexley, West Kent, West Sussex and other leading-edge health authorities eventually turn out to be nation-wide, then it implies that there may have been a substantial but unrecognised increase in autism, either because of increased incidence or better diagnosis, but probably both. In the context of the implications of the data from California, proper data-gathering is essential.

  178.  Issues for Discussion:

—  how can local monitoring be structured better, and brought up to the level of the best being undertaken by a minority of health authorities?

—  if several health authorities have very high incidence rates (between 1 in 300 and 1 in 500), does this imply much higher incidence than is currently realised in the remainder?

—  how will the development of the Children's Act Register, the Learning Disability Register and the National Health Surveillance Network interrelate, and how will these enable the Department and local health authorities (and other local agencies) to properly assess incidence of autism, monitor it for the future, and provide data for meeting needs?

—  does the recent study in Harrow, and the efforts of several leading-edge health authorities, offer a way forward, and how can the experience of these be quickly put to a wider use in advance of the National Health Surveillance strategy?

—  can the benefits of the Scottish education census approach be quickly and simply applied to the remainder of the UK, as a further starting-point?

—  will LEA regional groupings work closely together so that their information on autism and other related disorders (both for educationally-statemented children and non-statemented children) is gathered on a consistent UK basis—even if not 100 per cent compatible with data elsewhere in the world—so that it can form a useful database for health monitoring purposes?

—  can the Department of Health be very strongly encouraged to co-operate with the DfEE and regional LEA groupings on this issue?

  179.  Suggested Recommendations for Action:

—  rapid agreement of a nationwide "template" for monitoring autism, so that locally-gathered data is compatible between different parts of the UK;

—  early implementation of a nationwide survey;

—  early networking of local data and best health authority practice as part of the above, including all authorities where very high rates of incidence are now apparent;

—  extension of the Scottish education census in relation to autism, to the remainder of the UK through the LEA regional groupings, but to national standards of consistency (issue for education rather than health, but with health data implications);

—  joint working group between DfEE, DSS and DoH to investigate autism, including education and care costs.