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 Scottish 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 Also unpublished 1999 paper by Dr.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 Scott, 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 Clark, Commissioning Manager, Learning Disability Services, East Surrey Health Authority, tel 01372 731073, to David 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 David Thrower)
• Wakefield LEA autism pupils up from 5 to 111 in seven years (source: survey by David 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 David Thrower
• Scottish schools census up 18% in one year (source: Scottish Annual School Censuses, available from Scottish 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 David Thrower). Understand Western Isles & Highland is similar (contact parent doing Scottish 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 Scott 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 Martin 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 David Thrower)
• "The true incidence of autism is uncertain" - Kenneth 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 Taylor, June 1999 study
• "Numbers of cases of autism are rising, but the reason for this is unclear" - John Hutton, Minister for Public Health, December 2000

• At the end of January 2001, a paper, "Is There An Epidemic of Autism?" was published by Dr. Eric 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. Andrew 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