An open letter to Professor David Mandell Editor-in-Chief, Autism in response to the article "A new era in Autism" An open letter to Professor David Mandell Editor-in-Chief, Autism in response to the article "A new era in Autism"

Volume 1. No. 5

An open letter to Professor David Mandell Editor-in-Chief, Autism in response to the article "A new era in Autism" An open letter to Professor David Mandell Editor-in-Chief, Autism in response to the article "A new era in Autism"

 

May 23, 2018

By Nick Chown & Julia Leatherland

 

Abstract:

This is the text of a letter originally submitted as a response in Autism: the International Journal of Research and Practice. The editors of that journal originally refused to accept the letter with the endorsements, and subsequently failed to publish a revised version. The Editor of this journal feels that the issue is of sufficient importance with respect to the need for openness in academic publishing to warrant publication here, as it touches on ethical issues of relevance to the founding principles of the Autonomy Journal.

 


 

An open letter to Professor David Mandell Editor-in-Chief, Autism in response to the article "A new era in Autism" An open letter to Professor David Mandell Editor-in-Chief, Autism in response to the article "A new era in Autism"

By Nick Chown & Julia Leatherland

Barcelona

Spain

 

26th March 2018

 

 

Professor David Mandell

Editor-in-Chief, Autism

c/o University of Pennsylvania

3535 Market Street, 3rd Floor

Philadelphia, PA, 19104-6241
U. S. A.

 

Dear Professor Mandell,

 

Is it really a new era for autism research?

 

We hope that this year is indeed the start of a new era for autism research, as well as for your journal. We agree there is more autism research than ever before but are concerned that efforts are still predominantly focused on identification of the aetiology of autism. The Interagency Autism Coordinating Committee (IACC) recommendation, to double the funding for autism research by 2020, is welcome if funding does not continue to follow the current trend, in which the majority supports research designed to facilitate genetic manipulation and the possible eradication of autism (Pellicano et al, 2014).

 

Your editorial further states that ‘it is not just the amount of research being commissioned that is being transformed, it also the kind of research. The IACC now calls for research ‘… to improve services across the lifespan’. A ‘paradigm shift’ to research of real benefit for autistic people and their families will be a wonderful thing if it happens and we are keen to understand what steps will be taken to ensure this can be achieved.

 

It is our view that autism should not have to be a psychiatric diagnosis in order for those who need support to get it, whether via insurance or in a nationalised health and welfare system. We appreciate the difficulties in achieving systemic change but, in our view, it is the systems and not the human genome that need changing. The remainder of this letter sets out the rationale for wanting systemic change. We stress that until the inclusion of autism in the DSM and ICD is replaced by a separate identification (diagnostic) manual - which is accorded equal respect to the DSM and ICD in both legal and service provision terms - the status quo must be maintained to protect the interests of all autistic people.

 

We believe that, as long as autism – which is not a mental ill-health condition – remains in the psychiatric diagnostic manuals, there will continue to be those who use this to justify their attempts to find a cure. We believe it would be far more difficult to justify manipulating the human genome to remove autism, if it were not considered a psychiatric disorder and listed as such, alongside conditions such as schizophrenia, bi-polar disorder and psychosis. Currently autism must be categorised as either a mental health issue, or an intellectual learning disability[1], in order for autistic individuals to qualify for and access services, and yet although these can occur alongside autism, autism in itself is neither. One way to protect autistic individuals from any loss of access to support services, following the removal of their diagnostic label from the psychiatric manuals, would be to award autism its own separate status, as the cognitive difference many of us believe it to be. We therefore advocate that autism be removed from the existing psychiatric manuals and instead be included in a separate non-psychiatric identification (diagnostic) manual of neurodivergent needs[2]. Until then, the justification for genetic research will remain and the vested interests will continue to pursue the eradication of autism. Although those with such interests might continue with their efforts, even if autism is removed from the psychiatric diagnostic manuals, we hope that removal would make it more difficult for them to make a valid case for their work. We believe autism to be a special case for the following reasons.

 

Highly respected researchers in the field of autism have expressed their view that eradicating autism carries very serious risks for the future well-being of humanity. For instance, Simon Baron-Cohen has written that: ‘Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently 'cure' not just autism but the associated talents that are not in need of treatment’[3]. His is only one voice amongst a great many. Whilst we consider talents are integral[4] to rather than ‘associated’ with autism, and that autistic individuals may need support but never ‘treatment’, the sentiment behind this statement, that there is much to be lost by following this course, is shared. It can be assumed that researchers seeking a cure for autism would disagree and believe there are moral and ethical justifications for their work. They might argue that their scientific exploration will only provide the answers, and that it is up to society to decide what they wish to do with the information. Our response would be that one cannot put a genie back in its bottle. No benefit to the autistic community can follow the discovery of an autism ‘cure’[5], however, contrary to the ethical basis on which research should be judged, we cannot be so confident that it will ‘do no harm’.

 

Right at the beginning of the recorded history of autism there was reference to the presence of autistic strengths. Asperger wrote that many autistic individuals have a ‘particular originality of thought and experience’ (Asperger, 1944/1991, p. 37). A distinction has been made between strengths (i.e. domain-general abilities) such as creative thinking, fluid thinking, visual processing, logical reasoning, and attention to detail (Lanou, Hough & Powell, 2012) which are associated with altered information processing (Meilleur, Jelenic & Mottron, 2015), and talents (domain-specific abilities) which are influenced more by practise and expertise (ibid). However, the diagnostic criteria for autism recognise neither. As a deficit-focused check list of ‘impairments’ they perpetuate the ‘myth’, believed by so many professionals, researchers, policy-makers and organisations, that autism is only a negative entity. It also risks denying those so diagnosed the benefit of a positive self-identity. That the diagnostic criteria make no reference to how the social and physical environments impact on the degree of disablement of autistic individuals or their capacity to flourish, maintains the ‘individual as problem’ thinking so many in the neurodiversity movement are trying to shift. Psychiatric manuals are no place for the identification of skills, strengths and talents, and therefore no place for revised criteria for the identification of autism, which we believe should describe autism in its entirety, strengths as well as difficulties.

We have the pleasure to be associated with a group of autistic academics, each of whom demonstrates strengths in abundance. Their research sits within the paradigm we have outlined briefly here, having the potential to be of real benefit to autistic people, their families and beyond. Aetiology research, on the other hand, has the potential of eradicating future generations of autistic researchers. Of course, autistic researchers cannot achieve a paradigm shift by themselves any more than the IACC recommendation will. More is needed.

 

The diagnosis of ‘homosexuality’ was removed from the second edition of the American Psychiatric Association’s Diagnostic and Statistical Manual in 1973. This was the result of lengthy debate about the competing merits of various theories of homosexuality, those that pathologised it and those that regarded it as normal. Drescher (2015, p. 566) wrote that: ‘These theories [of normal variation] treat homosexuality as a phenomenon that occurs naturally. Such theories typically regard homosexual individuals as born different, but it is a natural difference affecting a minority of people, like left-handedness. The contemporary cultural belief that people are ‘born gay’ is a normal variation theory. As these theories equate the normal with the natural, they define homosexuality as good (or, at baseline, neutral). Such theories see no place for homosexuality in a psychiatric diagnostic manual’. Normal variation theory won in the end, consigning all other theory on homosexuality to the academic dustbin. This is the prime example of an aspect of humanity, once considered pathological, no longer being regarded as such. We recognise that, unlike autism, homosexuality does not carry disability status[6], and that this is an important distinction. Autism still needs to have identification criteria because autistic people need to have the opportunity to know they are autistic and to be protected from disabling environments and policies that discriminate against them. We are not arguing for the removal of the label, but for its removal from a classification that necessarily defines and pathologises it as a ‘disorder’, and for its inclusion in a separate social model-based disability classification. Such a classification would acknowledge that autism involves ‘disability’, so that autism remains within the ambit of disability discrimination and support legislation whilst recognising that much of the disability associated with autism has a societal cause. This would promote the much-needed research focus on the removal of barriers to success and well-being for autistic people, rather than the current focus on removing autism from the population.

 

In summary, despite all the achievements autistic pressure has already brought about, we believe that a paradigm shift will not take place until autism is removed from the existing diagnostic manuals. Removing autism from the manuals will: make it more difficult for genetic researchers in the autism field to justify what they do; encourage professionals in practice to look beyond ‘deficit’ to the recognition and optimisation of skills; and enable autistic individuals and their families to identify with a label that does not deny the strengths and potential that so many autistic individuals have. We accept that such change will not happen in the foreseeable future, if at all. An interim goal would be for those with the power to do so to facilitate a moratorium on all cure-related, genetic research in autism while the moral and ethical aspects of such research are the subject of such debate as took place around the issue of homosexuality. In addition, we challenge researchers undertaking genetic research in the hope of eradicating autism to consider:

 

(a)    what evidence there is that its eradication would improve the gene pool, and

 

(b)   in the absence of such evidence, what justification exists for continuing to pursue a cure for autism.

 

It is great to see the end of the jigsaw puzzle symbol. We wish your journal well.  

 

We wish to acknowledge the many professional colleagues who have already formally endorsed the views expressed in this letter. Although we are unable to append their names as we had hoped to do, we assure all those concerned that we greatly value the endorsements. The names are available from the corresponding author at the email address shown.

 

Yours sincerely,

 

 

 

Nick Chown

 

 

pp Nick Chown, PhD, MA Autism, PG Cert Asperger Syndrome, FIRM, MSocInd

Independent scholar and researcher – Autistic [email: npchown@gmail.com]

 

Julia Leatherland, final year PhD autism research student (Sheffield Hallam University), MA Autism, PG Cert Asperger Syndrome, BSc Psychology – Autistic

 

 

This letter has been endorsed by:

 

 

Name

Association with autism

Autistic

Dr. Joanna Baker-Rogers

autism researcher

 

Stephen Tickle Connolly

doctoral student and associate lecturer

Yes

Shona Davison

student autism researcher

Yes

Jonathan Drury

group facilitator of MA Autism course

Yes

Dr. Claire V.M. Evans-Williams

consultant clinical psychologist, autism & mental health specialist

Yes

Dr Kate Fox

academic and poet

Yes

Alyssa Hillary

doctoral student (neuroscience)

Yes

Liz Hughes

independent autism researcher

Yes

Carole Kelly

doctoral student researching the lived experiences of middle-aged autistic women identified very late in life

Yes

Jenn Layton

independent autism consultant, researcher, speaker and advocate for autistic individuals

Yes

Dr. Dawn-joy Leong

 

PhD in autism, neurodiversity & multi-art praxis

Yes

Gillian Loomes

social researcher and tutor in autism studies

Yes

Prof. Nicola Martin

head of research, higher degrees and student experience

 

Ann Memmott

national autism adviser working with universities

Yes

Dr Damian Milton

academic and autism consultant

Yes

Dr Dinah Murray

mother and grandmother of autistic children*

Yes

                 

autism educator, author and researcher, former support worker

 

Emma Rice

sense of self in autistic school children

 

Dr. Jackie Robinson

principal lecturer, faculty of health and life sciences

 

Paula Sanchez

doctoral student researcher (autistic motherhood)

Yes

Dr. Anna Stenning

research into literary representations of autism

Yes

Tracy Turner

doctoral researcher

Yes

Wendy West

student researching adult autism

Yes

Anna Williams

doctoral student (human centred computing)

Yes

 

 

 

 

* Many other individuals endorsing this letter have personal connections to autism in addition to the academic and professional connections listed.

 

 

 

References

 

Asperger, H. (1944). Die „Autistischen Psychopathenim Kindesalter. Archiv für psychiatrie und nervenkrankheiten, 117(1), 76-136.

 

Brown, J. (2010). Writers on the Spectrum: How Autism and Asperger Syndrome have Influenced Literary Writing, London: Jessica Kingsley Publishers.

 

Drescher, J. (2015). Out of DSM: depathologizing homosexuality. Behavioral Sciences, 5(4), 565-575.

 

Fitzgerald, M. (2004). Autism and Creativity: Is there a Link between Autism in Men and Exceptional Ability?. London: Routledge.

 

Glastonbury, M. (1997a). The Cultural Presence of Autistic Lives, Raritan, 17:1, 24–44.

 

Glastonbury, M. (1997b). 'I'll teach you differences': on the cultural presence of autistic lives, Changing English, 4:1, 51-65.

 

Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity, Englewood Cliffs, NJ: Prentice-Hall

 

Grandin, T., & Duffy, K. (2008). Developing talents: Careers for individuals with Asperger syndrome and high-functioning autism. AAPC Publishing.

 

Hughes, E. (2015). Does the different presentation of Asperger syndrome in girls affect their problem areas and chances of diagnosis and support?. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(4).

 

Ishisaka, Y. (2003a). Wittgenstein and Asperger syndrome: I. Did Wittgenstein have this syndrome? Japanese Journal of Child and Adolescent Psychiatry, 44:3, 231-251. 

 

Ishisaka, Y. (2003b). Wittgenstein and Asperger syndrome: II. Wittgenstein’s cognitive styles, Japanese Journal of Child and Adolescent Psychiatry, 44:3, 252-275.

 

Lanou, A., Hough, L., & Powell, E. (2012). Case studies on using strengths and interests to address the needs of students with autism spectrum disorders. Intervention in School and Clinic, 47(3), 175-182.

 

Lucas, P., & Sheeran, A. (2006). Asperger’s syndrome and the eccentricity and genius of Jeremy Bentham. Journal of Bentham Studies, 8, 1-37.

 

McDonagh, P. (2005). Autism and Modernism: an Inquiry into Aesthetics, [online] Last accessed 29 September 2017 at: http://societyforcriticalexchange.org/includes/pageContent/Archives/Archives2005/Autism%20and%20Representation%20Mcdonagh.htm

 

Meilleur, A. A. S., Jelenic, P., & Mottron, L. (2015). Prevalence of clinically and empirically defined talents and strengths in autism. Journal of Autism and Developmental Disorders, 45(5), 1354-1367.

 

Olsen, L. (1986). Diagnosing Fantastic Autism: Kafka, Borges, Robbe-Grillet, Modern Language Studies, 16:3, 35-43.

 

Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756-770.

 

Pellicano, L., Mandy, W., Bölte, S., Stahmer, A., Lounds Taylor, J., & Mandell, D. S. (2018). A new era for autism research, and for our journal.

 

Perry, A. (2013). Noise and Metonymic Thought in the Philosophy of Arthur Schopenhauer: Some Benefits of Retrospective Psychiatric Diagnosis Through Writing. In Ethics and Neurodiversity (eds.) Herrera, C. D. & Perry, A., Newcastle upon Tyne: Cambridge Scholars Publishing.

 

Sacks, O. (2006). The power of music. Brain, 129(10), 2528-2532.

 



[1] Autistic individuals frequently, but not always, also have differing degrees of co-occurring intellectual disability which impact on their day-to-day functional abilities.

[2] Which could include such cognitive differences as dyslexia and dyspraxia, which are considered specific learning difficulties.

[3] http://news.bbc.co.uk/2/hi/health/7736196.stm

[4] We do not imply that all autistic individuals are talented, just that there is sufficient evidence to suggest that autism can give rise to talents. This is not the same thing as some autistic individuals being talented.

[5] We absolutely accept that for some, autism can be extremely distressing and limiting - however, we also believe that these circumstances occur when the environment is (for whatever reason) not suited to the support needs of the individual, and/or when autism co-occurs with another condition; we do not subscribe to the notion that autism in and of itself is the primary cause of such distress and limitations.

 

[6] Though, importantly, homosexuality is included in anti-discrimination legislation.

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