On 2016 Sep 23, J Stone commented:

None

On 2016 Sep 23, J Stone commented:

None

On 2016 Sep 23, J Stone commented:

None

On 2016 Aug 23, Traolach S Brugha commented:

We are grateful to J Stone for this PubMed Commons comment of 2016 Aug 16 10:53 a.m. Detailed scrutiny of the methods used in this unique epidemiological research on autism in adulthood (cited reference 1 Brugha TS, 2011) is in the best interests of people with autism, their carers and the research community and is therefore of great importance.

The author’s assertion that the statistics published by us have been downgraded to the status of experimental statistics is mistaken. He should read the references cited by him (4, 5) more carefully. Furthermore this research has been published in world leading psychiatric journals (Cited reference 1 Brugha TS, 2011; additional references: Brugha et al 2012, and 2016).

The author refers to the study (cited reference 1 Brugha TS, 2011; and Brugha et al, cited reference 2) derived from a 2009 NHS publication (cited reference 3) to further assert that criticism of the methodology includes questions over five issues. But the author does not provide the five questions or reference their source. However the points listed can be addressed very briefly.

Interested readers will find more information on the basis for the scoring of the diagnostic autism test ADOS-4 and evaluation of its use in a validation study published since (Brugha et al 2012). This additional research was required because the original scoring of the diagnostic autism test ADOS-4, at that time, had only been tested in teen age and young adult patients attending specialist US autism clinics; it had never been validated in the survey population, a random sample of adults and elderly people living in private households throughout England. The resulting validated scoring was different. We plan to publish more details of this.

The author then questions the ‘transparency of the weighting method used in the APMS 2007 survey’. A description of the methods is available at: http://www.hscic.gov.uk/catalogue/PUB02931/adul-psyc-morb-res-hou-sur-eng-2007-rep.pdf and at: http://www.hscic.gov.uk/catalogue/PUB01131/aut-sp-dis-adu-liv-ho-a-p-m-sur-eng-2007-rep.pdf. The assertion that that the work inflated 19 "cases" to 72 is also mistaken (table 1, cited reference (1) Brugha TS, 2011).

The ‘substitution of the category "Autistic Spectrum Disorder" for "Asperger Syndrome" between the publication of the original 2007 psychiatric morbidity survey (cited reference 7) and its appendix (cited reference 3) in 2009’ will be unsurprising to readers of the 5th Revision of the Diagnostic and Statistical Manual (2013). The term ‘asperger’ is no longer justified officially.

The author refers to ethical issues. Ethical approval for the study was obtained from the Royal Free Medical School Research Ethics Committee, London, England (cited reference 1). The ethical approval application clearly states the purpose of the research including: “…The main objective of the survey is to collect data on the mental health of adults...” More specifically, “... the survey will aim to estimate the levels of psychiatric disorder according to diagnostic category among the population aged 16 and over living in England…”

And finally the author makes the point that ‘the survey published by the NHS and funded by the Department of Health was claimed by the NHS at the time to be evidence that measles, mumps, rubella vaccine (MMR) had not affected the rate of autism, citing a newspaper article (cited reference 6). Further discussion of possible relevance to the context of this point may be of interest to the reader: http://www.bmj.com/content/342/bmj.c7452/rr/635992.

Additional references referred to in this response:

American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5™). American Psychiatric Press, Washington DC.

Brugha TS, McManus S, Smith J, Scott FJ, Meltzer H, Purdon S, et al. Validating two survey methods for identifying cases of autism spectrum disorder among adults in the community. Psychol Med 2012 Mar;42(3):647-56 Brugha TS, 2012.

Brugha,T.S., Spiers,N., Bankart,J., Cooper,S.A., McManus,S., Scott,F.J., Smith,J. & Tyrer,F. (2016). Epidemiology of autism in adults across age groups and ability levels. Br.J Psychiatry. Brugha TS, 2016. DOI: 10.1192/bjp.bp.115.174649.

On 2016 Aug 16, J Stone commented:

The data in the study cited (1) by Brugha et al (2) is derived from a 2009 NHS publication which was published as National Statistics (3). However, according to government documents published on line in May 2016 (4, 5) the UK Statistics Authority have downgraded these statistics to the status of "experimental statistics". The survey published by the NHS and funded by the Department of Health was claimed by the NHS at the time to be evidence that measles, mumps, rubella vaccine (MMR) had not affected the rate of autism (6).

Apart from the political context of its publication, criticism of the methodology include questions over:

• the correct scoring of the diagnostic autism test ADOS-4

• ADOS-4 was used incorrectly as a stand-alone test

• a non-transparent weighting method was used that inflated 19 "cases" to 72

• the substitution of the category "Autistic Spectrum Disorder" for "Asperger Syndrome" between the publication of the original 2007 psychiatric morbidity survey (7) and its appendix (3) in 2009

  • the ethical issue of whether members of public were told that they were to be assessed for "morbid" conditions.

(1) Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bebbington P, Jenkins R, Meltzer H. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry 2011 May;68(5):459-65. (2) Brugha TS, McManus S, Bankart J, Jenkins R, Smith J, Scott F, The proportion of true cases of autism is not changing. BMJ. 2014 Jun 11;348:g3774. doi: 10.1136/bmj.g3774. (3) Brugha TS, McManus S, Meltzer H, Smith J, Scott FJ, Purdon S, Harris J, Bankart J, Autistic Spectrum Disorders in adults living in households throughout England: Report from the Adult Psychiatric Morbidity Survey 2007, http://digital.nhs.uk/catalogue/PUB01131/aut-sp-dis-adu-liv-ho-a-p-m-sur-eng-2007-rep.pdf (4) Letter from Ed Humpherson to Clifford Miller, https://www.statisticsauthority.gov.uk/wp-content/uploads/2016/05/Letter-from-Ed-Humpherson-to-Mr-Miller-230616-1.pdf (5) UK Statistics Authority, Assesment of the compliance with the code of practice for official statistics:, National Study of health and Wellbeing: Adult psychiatric morbidity survey 2007. (6) Sarah Boseley, Autism is just as common in adults, so MMR is off the hook, https://www.theguardian.com/society/2009/sep/22/autism-rate-mmr-vaccine (7) Bebbington P, Brugha T, Wessely S etc. Adult psychiatric morbidity in England, 2007, http://digital.nhs.uk/catalogue/PUB02931/adul-psyc-morb-res-hou-sur-eng-2007-rep.pdf

On 2016 Aug 16, J Stone commented:

The data in the study cited (1) by Brugha et al (2) is derived from a 2009 NHS publication which was published as National Statistics (3). However, according to government documents published on line in May 2016 (4, 5) the UK Statistics Authority have downgraded these statistics to the status of "experimental statistics". The survey published by the NHS and funded by the Department of Health was claimed by the NHS at the time to be evidence that measles, mumps, rubella vaccine (MMR) had not affected the rate of autism (6).

Apart from the political context of its publication, criticism of the methodology include questions over:

• the correct scoring of the diagnostic autism test ADOS-4

• ADOS-4 was used incorrectly as a stand-alone test

• a non-transparent weighting method was used that inflated 19 "cases" to 72

• the substitution of the category "Autistic Spectrum Disorder" for "Asperger Syndrome" between the publication of the original 2007 psychiatric morbidity survey (7) and its appendix (3) in 2009

  • the ethical issue of whether members of public were told that they were to be assessed for "morbid" conditions.

(1) Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bebbington P, Jenkins R, Meltzer H. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry 2011 May;68(5):459-65. (2) Brugha TS, McManus S, Bankart J, Jenkins R, Smith J, Scott F, The proportion of true cases of autism is not changing. BMJ. 2014 Jun 11;348:g3774. doi: 10.1136/bmj.g3774. (3) Brugha TS, McManus S, Meltzer H, Smith J, Scott FJ, Purdon S, Harris J, Bankart J, Autistic Spectrum Disorders in adults living in households throughout England: Report from the Adult Psychiatric Morbidity Survey 2007, http://digital.nhs.uk/catalogue/PUB01131/aut-sp-dis-adu-liv-ho-a-p-m-sur-eng-2007-rep.pdf (4) Letter from Ed Humpherson to Clifford Miller, https://www.statisticsauthority.gov.uk/wp-content/uploads/2016/05/Letter-from-Ed-Humpherson-to-Mr-Miller-230616-1.pdf (5) UK Statistics Authority, Assesment of the compliance with the code of practice for official statistics:, National Study of health and Wellbeing: Adult psychiatric morbidity survey 2007. (6) Sarah Boseley, Autism is just as common in adults, so MMR is off the hook, https://www.theguardian.com/society/2009/sep/22/autism-rate-mmr-vaccine (7) Bebbington P, Brugha T, Wessely S etc. Adult psychiatric morbidity in England, 2007, http://digital.nhs.uk/catalogue/PUB02931/adul-psyc-morb-res-hou-sur-eng-2007-rep.pdf

On 2016 Aug 23, Traolach S Brugha commented:

We are grateful to J Stone for this PubMed Commons comment of 2016 Aug 16 10:53 a.m. Detailed scrutiny of the methods used in this unique epidemiological research on autism in adulthood (cited reference 1 Brugha TS, 2011) is in the best interests of people with autism, their carers and the research community and is therefore of great importance.

The author’s assertion that the statistics published by us have been downgraded to the status of experimental statistics is mistaken. He should read the references cited by him (4, 5) more carefully. Furthermore this research has been published in world leading psychiatric journals (Cited reference 1 Brugha TS, 2011; additional references: Brugha et al 2012, and 2016).

The author refers to the study (cited reference 1 Brugha TS, 2011; and Brugha et al, cited reference 2) derived from a 2009 NHS publication (cited reference 3) to further assert that criticism of the methodology includes questions over five issues. But the author does not provide the five questions or reference their source. However the points listed can be addressed very briefly.

Interested readers will find more information on the basis for the scoring of the diagnostic autism test ADOS-4 and evaluation of its use in a validation study published since (Brugha et al 2012). This additional research was required because the original scoring of the diagnostic autism test ADOS-4, at that time, had only been tested in teen age and young adult patients attending specialist US autism clinics; it had never been validated in the survey population, a random sample of adults and elderly people living in private households throughout England. The resulting validated scoring was different. We plan to publish more details of this.

The author then questions the ‘transparency of the weighting method used in the APMS 2007 survey’. A description of the methods is available at: http://www.hscic.gov.uk/catalogue/PUB02931/adul-psyc-morb-res-hou-sur-eng-2007-rep.pdf and at: http://www.hscic.gov.uk/catalogue/PUB01131/aut-sp-dis-adu-liv-ho-a-p-m-sur-eng-2007-rep.pdf. The assertion that that the work inflated 19 "cases" to 72 is also mistaken (table 1, cited reference (1) Brugha TS, 2011).

The ‘substitution of the category "Autistic Spectrum Disorder" for "Asperger Syndrome" between the publication of the original 2007 psychiatric morbidity survey (cited reference 7) and its appendix (cited reference 3) in 2009’ will be unsurprising to readers of the 5th Revision of the Diagnostic and Statistical Manual (2013). The term ‘asperger’ is no longer justified officially.

The author refers to ethical issues. Ethical approval for the study was obtained from the Royal Free Medical School Research Ethics Committee, London, England (cited reference 1). The ethical approval application clearly states the purpose of the research including: “…The main objective of the survey is to collect data on the mental health of adults...” More specifically, “... the survey will aim to estimate the levels of psychiatric disorder according to diagnostic category among the population aged 16 and over living in England…”

And finally the author makes the point that ‘the survey published by the NHS and funded by the Department of Health was claimed by the NHS at the time to be evidence that measles, mumps, rubella vaccine (MMR) had not affected the rate of autism, citing a newspaper article (cited reference 6). Further discussion of possible relevance to the context of this point may be of interest to the reader: http://www.bmj.com/content/342/bmj.c7452/rr/635992.

Additional references referred to in this response:

American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5™). American Psychiatric Press, Washington DC.

Brugha TS, McManus S, Smith J, Scott FJ, Meltzer H, Purdon S, et al. Validating two survey methods for identifying cases of autism spectrum disorder among adults in the community. Psychol Med 2012 Mar;42(3):647-56 Brugha TS, 2012.

Brugha,T.S., Spiers,N., Bankart,J., Cooper,S.A., McManus,S., Scott,F.J., Smith,J. & Tyrer,F. (2016). Epidemiology of autism in adults across age groups and ability levels. Br.J Psychiatry. Brugha TS, 2016. DOI: 10.1192/bjp.bp.115.174649.

On 2016 Sep 23, J Stone commented:

None

On 2016 Sep 23, J Stone commented:

None

On 2016 Sep 23, J Stone commented:

None