Autism spectrum disorder: advances in diagnosis and evaluation
BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k1674 (Published 21 May 2018) Cite this as: BMJ 2018;361:k1674
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A recent systematic review and meta-analysis of high quality relative clinical studies concluded that women with polycystic ovarian syndrome (PCOS) had increased odds of giving birth to children suffering from autism spectrum disorder.
Reference
https://www.nature.com/articles/s41380-019-0398-0
Competing interests: No competing interests
I thank the Commissioning Editor and the authors for a thoughtful and thought provoking order. ( Though as yet, from England, only Mr Stone and I have commented.
1, The authors refer to African Americans. At first glance you might assume that the term embraces ALL Americans who are descended from Africans or are migrants from Africa. This assumption misses the biological fact that, say a Kikuyo is as different from an Ibo as chalk is from cheese. You would not lump together the Norse and the Catalans.
2. The “African Americans are not homogeneous culturally either.
3. First Nations. Sioux of Alberta ( even though with some mixture with later arrivals, still are different from the Nova Scotians.
4. Homing in on the English scene, as Mr John Stone has repeatedly pointed out, the government is ignoring the rising numbers, thus ignoring the burden on the social services and on educational facilities, AS WELL AS on mental health services. Is it not obvious then, that the families of these children, adolescents and adults are shattered? I would like to know how Alberta is coping.
5. Aetiological factors.
a) One rapid response from the USA, suggests that certain animal fractions may have a protective effect. Would our MRC care to explore?
b) Another rapid response from the USA suggests that autoimmune antibodies may be responsible. This too ought to be explored by the English immnologists. And if it is the case, what are precipitating factors? Are we, somehow, distorting or overwhelming some immunological processess?
Would our neurologists and immunologists be kind enough o help?
Has the Dept of Health any views? Has its agent - NHS ENGLAND any views?
Competing interests: No competing interests
My MP has now forwarded a response from minister Caroline Dinenage which goes no further than noting my concerns and stating what the policy is: i.e. if the Department of Health and Social Care is attending to the problem I have indicated at any level they are not yet saying so. Meanwhile, a report has appeared in the Belfast Telegraph about a crisis in special needs spending for Northern Ireland where as we have seen the autism rate is now 2.9% (in Belfast 4.7%) [1]:
"The financial crisis in education is now "at a make or break point", a teaching union official has warned.
"Jacquie White, the deputy general secretary of the Ulster Teachers' Union, was responding to comments by Department of Education permanent secretary Derek Baker, who says the education system here is facing unprecedented financial pressures.
"Mr Baker's remarks come in newly published departmental accounts for 2017-18, which reveal the Education Authority overspent its budget by £18.9m, due mainly to increased expenditure on schools and pupils with special educational needs.
"Mr Baker added that the absence of an Education Minister has resulted in "significant and unique challenges" in relation to budgets, policy development and delivery, which won't be fully addressed until there is significant transformation of the sector.
"But Ms White says the funding crisis in education is now "personal" to every child in Northern Ireland.
""Mr Baker isn't telling us anything we or sadly the parents and children at the sharp end of the education crisis don't know already," she said."
The stories are repeated endlessly across the United Kingdom [2]. A rough calculation suggests that if 2.9% is a normal rate of ASD for the UK population there should be about 1.9m cases all told, whereas even the National Autistic Society only project 0.7m [3]. Moreover, as of August 2013 the Department of Works and Pensions recorded only 128,950 case of Autism Spectrum Disability on Disability Living Allowance (36,870 with Asperger Syndrome, 92,080 with "Autism") and many of these (perhaps preponderantly) will have been minors [4]. We have far too many cases and no one is giving any answers.
[1] Lauren Harte, 'Northern Ireland schools funding ‘at make or break point’ after £19m overspend', Belfast Telegraph 3 August 2018, https://www.belfasttelegraph.co.uk/news/northern-ireland/northern-irelan...
[2] Responses to Viner RM, 'NHS must prioritise health of children and young people', https://www.bmj.com/content/360/bmj.k1116/rapid-responses
[3] National Autistic Society 'Autism Facts and History' https://www.autism.org.uk/about/what-is/myths-facts-stats.aspx
[4] Freedom of Information request 2014-722 , https://assets.publishing.service.gov.uk/government/uploads/system/uploa...
Competing interests: No competing interests
As I recorded in my letter below [1], I currently await some response from the Department of Health and Social Care about the rise in autism. When I was first in touch with them based on my experiences in Haringey in 2000 they sent me by way of reassurance a paper by Eric Fombonne, 'The epidemiology of autism: a review' (1999) [2], so it is is exceedingly interesting to compare the picture then with current data:
"Across surveys, the median prevalence estimate was 5.2/10000. Half the surveys had 95% confidence intervals consistent with population estimates of 5.4-5.5/10000. Prevalence rates significantly increased with publication year, reflecting changes in case definition and improved recognition; the median rate was 7.2/10 000 for 11 surveys conducted since 1989...There was no evidence for a secular increase in the incidence of autism. In eight surveys, rates for other forms of pervasive developmental disorders were two to three times higher than the rate for autism...Based on recent surveys, a minimum estimate of 18.7/10000 for all forms of pervasive developmental disorders was derived, which outlines the needs in special services for a large group of children."
It is interesting to notice that Fombonne's figure 18.2/10,000 is close to the contemporaneous (1999) National Statistics mental health survey which discovered a rate of 0.2% for 11 to 15 year olds, but for the 5 to 10 year olds (although diagnosis would be highly incomplete) it was already 0.4%, while being monitored by the same services.
Already Fombonne was arguing not very persuasively - if you were on the ground - that there was no real change, but just changes in criteria, substitution, whatever, and this is continuous with the accounting strategies of the present, although PDD was itself already the broadest criterion and that was 19 year ago. But now we are looking at conservative estimates of 250/10,000 [3,4] and still no emergency? It should be said - although I had much less experience in 2000 - that this is exactly where I thought we would be now if people went on talking like this, and we are. The trend is unremittingly up, and it is the government's own data which tells us this.
[1] John Stone, 'Re: Autism spectrum disorder: advances in diagnosis and evaluation' 27 July, https://www.bmj.com/content/361/bmj.k1674/rr-10
[2] Eric Fombonne, 'The epidemiology of autism: a review', Psychol Med. 1999 Jul;29(4):769-86, https://www.ncbi.nlm.nih.gov/pubmed/10473304
[3] Metzler et al, 'The mental health of children and adolescents in Great Britain' National Statistics 1999, p.33 Table 4.1 'Prevalence of Mental Disorders', Pervasive development disorder is listed under 'less common disorders', http://www.dawba.com/abstracts/B-CAMHS99_original_survey_report.pdf
[4] John Stone, 'Re: Autism spectrum disorder: advances in diagnosis and evaluation', 21 May 2018, https://www.bmj.com/content/361/bmj.k1674/rr
[5] 'Re: Autism spectrum disorder: advances in diagnosis and evaluation: Nothing to see here folks!', 26 July 2018, https://www.bmj.com/content/361/bmj.k1674/rr-8
Competing interests: No competing interests
As so often I am grateful to JK Anand. I think we might pose the question, given the immense social consequences and costs of the phenomenon I am charting, including the long term viability of a population with such a level of disability, what is holding the medical profession and the government back from addressing it? It is nearly two months since my MP wrote to the Department of Health and Social Care based on my concerns presented in these columns and still there is no reply. Do they know something I don't?
Competing interests: No competing interests
Mr Stone asks, “ Why does it always fall to me.....”?
My answer is:
1. Thank heavens the BMJ allows awkward questions to be published on the web.
2. Her Majesty’s Govt is a pachyderm. It will not react to minor stimuli.
3. The medical profession today is largely inert.
4. The medical officer of health who was examined and cross-examined by the elected councillors and by the press was consigned to the dustbin of history in 1974.
5. The “community physicians” who were born in 1974 were expected to be the catalysts of change, trouble-makers and then only administrators. Some of them DID do the job, aided by community health councils and a still vigorous press and television (at least in my experience - please check the local and national press and television records).
Then HMG abolished community health councils (they were so awkward to the Establishment).
6. Now we do have Directors of Public Health. Do they, sometimes, listen to their public (such as Mr Stone) and answer their questions? I do not think so. Never have I seen a rejoinder by a director of public health.
7. The psychiatrists (you might think they had an interest in autism) and paediatricians ( you might reasonably suggest, DO have an interest in the causes, the incidence, the increasing incidence of autism) are mute.
Fare thee well, epidemiology.
Fare thee well, public health.
Competing interests: No competing interests
Further to my letter of 21 May [1] in which I noted that the ASD figures for England were just within Zwaigenbaum and Penner's 1-1.5% range for the global incidence of autism [2] as of January 2017, the figure had risen by January 2018 (published today) to 1.64%, that is from 1 in 67 to 1 in 61 (8,735,098 children/142,988 with an ASD diagnosis) [3,4,5]]. It is important to emphasise that this is a 9.4% rise not in the new in-take but for the entire 15 year cohort, and is therefore huge.
Again, it is to be stressed that these figures are incomplete, and that according to a report by Norman Lamb MP to the All Party Parliamentary Group on Autism earlier this month unacceptable waiting times exist across the country for a diagnosis [6]. It is very unfortunate that this report only focuses on the shortage of diagnostic capacity, and not on the causes of this vast increase.
Lamb's report may go some way to explaining why the English figures lag those in Scotland (2.2%) and Northern Ireland (2.9%), although I have heard stories of long delays in these places too. In 2009 based on 2004 survey Baron-Cohen posited that for every 3 children with a diagnosis there were 2 without [7] but with pressures described by Lamb who is to say that position has not deteriorated since then (I note the situation as described in my previous letter in SW London with each borough apparently awaiting nearly 300 new cases per year and there were twice as many cases as diagnostic capacity [1])?
With government always resistant to acknowledging special educational needs and the evident long delays in diagnosis, the continued complacency and inertia in addressing the causes of this explosive rise are truly disturbing. Another question might be why does it so often fall to me and not to the government or the professionals to calculate and publish these percentages and ratios?
[1] John Stone, 'Re: Autism spectrum disorder: advances in diagnosis and evaluation', 21 May 2018, https://www.bmj.com/content/361/bmj.k1674/rr
[2] Zwaigenbaum L, Penner M, 'Autism spectrum disorder: advances in diagnosis and evaluation', BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k1674 (Published 21 May 2018)
[3] National Statistics, 'Schools, Pupils and their Characteristics' main text: January 2018, https://www.gov.uk/government/statistics/schools-pupils-and-their-charac...
[4] National Statistics, 'Special Education Needs in England' January 2018 National Tables table 8 https://www.gov.uk/government/statistics/special-educational-needs-in-en...
[5] National Statistics, 'Special Educational Nees in England' January Additional Tables table G https://www.gov.uk/government/statistics/special-educational-needs-in-en...
[6] National Autistic Society, 'Autism diagnosis postcode lottery exposed (18 July 2018)', https://www.autism.org.uk/get-involved/media-centre/news/2018-07-18-auti...
[7] Baron-Cohen et al, 'Prevalence of autism-spectrum conditions: UK school-based population study', The British Journal of Psychiatry Volume 194, Issue 6 June 2009 , pp. 500-509, https://www.cambridge.org/core/journals/the-british-journal-of-psychiatr...
Competing interests: No competing interests
In answer to John Stone, when I say "muscle meats", I am also referring to fish and poultry. These days, they too are generally eaten without the bones (that used to be tossed into the soup pot instead of the trash), not to mention the likes of shrimp, crab and lobster, of which also only the muscle meats are consumed. And although the consumption of bone broth has now gained some popularity, I think the general shift away from eating it in recent generations is common knowledge. Certainly the overall consumption of meats, fish (including shellfish) and poultry is much higher now in the Western world than in previous generations, and the fact that this results in the depletion of glycine specifically has now been clearly demonstrated in the EPIC-Oxford cohort (1) as I pointed out in my previous response in this string. Perhaps it is unfortunate that those cohort members who consume an omnivorous diet were classified as "meat-eaters", in order to contrast their dietary habits to those who consume no meat or poultry (classified as "fish-eaters"), those who consume no meat, fish or poultry (classified as "vegetarians"), and those who consume no animal products at all ("vegans").
Schmidt JA, Rinaldi S, Scalbert A, et al. Plasma concentrations and intakes of amino acids in male meat-eaters, fish-eaters, vegetarians and vegans: a cross-sectional analysis in the EPIC-Oxford cohort. Eur J Clin Nutrition 2016;70:306–12. doi:10.1038/ejcn.2015.144
Competing interests: No competing interests
I am grateful to Joel Brind, but while I would not wish to dismiss out of hand low glycine consumption as a potential factor in autism - among other environmental influences - I also note that his statement:
"There has been in recent years, in the industrialized world, a general dietary shift away from the consumption of whole meats, fish and poultry, toward the consumption of exclusively muscle meats."
is not supported by any cited evidence, though he has twelve footnotes. Meanwhile, I still find on visits to supermarkets that the shelves are still stacked with fish and poultry as well as "muscle meat". I understand that even Macdonald's offer alternatives to burgers, including fish and chicken. Nor, perhaps, would the parents of autistic children like to be stereo-typed as burger eaters!
Competing interests: No competing interests
Autism among school children is 4 times the upper figure given in this "State of the Art " report three years ago and 20 times that in 1999
Dear Editor
In 1999 according to a carefully conducted survey for the geographical region ‘Great Britain’ the rate of autism in schools was 0.3%. As many of us realised at the time there was already a dynamic increase: there were twice as many cases (0.4%) in primary school (4-11) as secondary (12-18) (0.2%) although secondary students had a longer time to gain a diagnosis and were monitored by the same services (p.33 Table 4.1, listed as ‘a less common disorder, Pervasive Development Disorder) [1].
In 2021 in Northern Ireland, the one region where there is serious attempt to count, the figure is now around 6% [2,3]. This is also now 4 times the rate at the high end of Zwaigenbaum and Penner’s “state of the art” projection just three years ago [4,5]. Two-thirds of those with a diagnosis are severely disabled being at Education Stage 5 [2].
The difference between Northern Ireland and the rest of the United Kingdom is probably only that in Northern Ireland they make a conscientious attemp to collect the data. Time to stop playing at news management and address real problems?
[1] Meltzer et al, ‘The mental health of children and adolescents in Great Britain’, 1999, https://webarchive.nationalarchives.gov.uk/20160107072821/http://www.ons...
[2] John Stone, ‘5.8% of 13 year-olds in Northern Ireland have an autism diagnosis’, 20 May 2021, https://www.bmj.com/content/366/bmj.l4564/rr-11
[3] John Stone, ‘Re: 5.8% of 13 year-olds in Northern Ireland have an autism diagnosis’, 20 May 2021, https://www.bmj.com/content/366/bmj.l4564/rr-12
[4] Zwaigenbaum and Penner, ‘Autism spectrum disorder: advances in diagnosis and evaluation’, BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k1674 (Published 21 May 2018)
[5] John Stone, ‘ Re: Autism spectrum disorder: advances in diagnosis and evaluation’, 21 May 2018, https://www.bmj.com/content/361/bmj.k1674/rr
Competing interests: AgeofAutism.com, an on-line daily journal, concerns itself with the potential environmental sources for the proliferation of autism, neurological impairment, immune dysfunction and chronic disease. I receive no payment as UK Editor. I also moderate comments for the on-line journal ‘The Defender’ for which I am paid. I am also a member of the UK Medical Freedom Alliance